Suffering : psychological and social aspects in loss, grief, and care 9781306575287, 1306575281, 9781315826202, 1315826208, 9780866565585

506 95 3MB

English Pages 196 [211] Year 2013

Report DMCA / Copyright

DOWNLOAD FILE

Polecaj historie

Suffering : psychological and social aspects in loss, grief, and care
 9781306575287, 1306575281, 9781315826202, 1315826208, 9780866565585

Table of contents :
Content: Patients' wants and needs : the physicians' responses / William F. Finn --
Suffering and autonomy / Frances L. Drew --
Suffering, thanatology, and whole-person medicine / Lewis Penhall Bird --
The pain of the physician / Richard S. Blacher --
Repetitive existential plight : the emotional impact of recurrent serious illness / Robert Lynn --
Suffering in chronic mental illness / Francine Cournos --
Reflections on suffering prompted by ALS / Claire F. Leach, John Kelemen --
Suffering and end stage renal disease / Kenneth Trachy --
Cancer patients and radiotherapy : close encounters of a third kind / Lynda R. Mandell, Tapan Hazra, Henry L. Tomlin --
Experiences in a hospice : the AIDS patient / Sister Patrice Murphy --
Suffering / Leonard M. Liegner --
Home care for the dying child with cancer : feasibility and desirability / Ida M. Martinson --
Euthanasia and moral stress / Bernard E. Rollin --
On the value of Suffering in the shadow of death / David Wendell Moller --
Suffering and pain / Martin H. Blitzer --
Death and growth : the problem of pain / Allen P. Fertziger --
The child and suffering : the role of the school / Robert G. Stevenson --
Spiritual support for the suffering : clergy attitudes toward bereavement / Kenneth J. Doka, Michael Jendreski --
A pastoral view of widowhood / Carole Smith Torres --
Push back the curtain of darkness / T. Earl Yarborough --
Aspects of anxiety : financial concerns when death is imminent / Gerald Rosner --
Suffering and the quest for meaning / Jeffrey A. Watson --
"And day brought back my night" / Elizabeth K. Hill.

Citation preview

Suffering Psychological and Social Aspects in Loss, Grief and Care

Robert DeBellis, Eric Marcus, Austin H. Kutscher, Carole Smith Torres, Virginia Barrett, and Mary-Ellen Siegel

Suffering Psychological and Social Aspects in Loss, Grief, and Care

ABOUT THE EDITORS Robert DeBellis, Assistant Professor of Clinical Medicine (Oncol­ ogy), College of Physicians and Surgeons, Columbia University, New York, New York. Eric Marcus, Assistant Clinical Professor, Department of Psychi­ atry, College of Physicians and Surgeons, Columbia University, New York, New York. Austin H. Kutscher, President, The Foundation of Thanatology, New York, New York; Professor of Dentistry (in Psychiatry), Department of Psychiatry, College of Physicians and Surgeons, Columbia University; Professor of Dentistry (in Psychiatry), School of Dental and Oral Surgery, Columbia University, New York, New York. Carole Smith Torres, Pastoral Associate, Department of Pastoral Care, The Presbyterian Hospital in the City of New York, New York. Virginia Barrett, Consultant, Center for Geriatrics and Gerontol­ ogy, Columbia University, New York, New York. Mary-Ellen Siegel, Department of Community Medicine (Social Work), Senior Teaching Associate, Mt. Sinai School of Medi­ cine, New York, New York.

Suffering Psychological and Social Aspects in Loss, Grief, and Care

Robert DeBellis, Eric Marcus, Austin H. Kutscher, Carole Smith Torres, Virginia Barrett, and Mary-Ellen Siegel Editors



Routledge Taylor & Francis Group

LONDON AND NEW YORK

Suffering: Psychological and Social Aspects in Loss, Grief, and Care has also been published as Loss, Grief A Care: A Journal o f Professional Practice, Volume 1, Numbers 1/2, Fall 1986/Winter 1986-87.

First published 1986 by The Haworth Press, Inc Published 2013 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon 0X 14 4RN 711 Third Avenue, New York, NY 10017, USA Routledge is an imprint o f the Taylor & Francis Group, an informa Intsiness © 1986 by The Haworth Press, Inc. All rights reserved. No part of thiswork may be repro­ duced or utilized in any form or by any means, electronic or mechanicalincluding photo­ copying, microfilm and recording, or by any information storage and retrieval system, without permission in writing from the publisher. Library of Congress Cataloglng-ln-Publlcatlon Data Main entry under title: Suffering: psychological and social aspects in loss, grief, and care. Published also as v. I, nos. 1/2 of Loss, grief & care. Includes bibliographies. I. Suffering—Psychological aspects. 2. Suffering—Social aspects. I. DeBellis, Robert. BF789.S8S84 1986 362.8 85-31744 ISBN 978-0-866-56558-5 (hbk)

Suffering Psychological and Social Aspects in Loss, Grief, and Care Loss, Grief & Care Volume 1, Numbers 1/2 CONTENTS Patients’ Wants and Needs: The Physicians’ Responses William F. Finn

1

The Clinical Encounter Health, Illness, and Disease Pain and Suffering Suffering The Responses of Physicians to the Needs and Wants of Patients The Needs and Wants (Virtues and Vices) of the Patient Desirable and Undesirable Traits (Virtues and Vices) in Physicians Therapeutic Relationship to Covenant One of the Best Ways to Improve the Therapeutic Relationship Is for the Physician to Have Suffered a Serious Illness

1 2 4 5 7 8 10 13 15

Suffering and Autonomy Frances L. Drew

19

The Dying Patient: Physician’s Suffering Sally K. Severino Richard Friedman Pamela Moore

25

Case Presentation Discussion

26 27

Suffering, Thanatology, and Whole-Person Medicine Lewis Penhall Bird

31

The Pain of the Physician Richard S. Blacher

41

Repetitive Existential Plight: The Emotional Impact of Recurrent Serious Illness Robert Lynn Case 1 Case 2

45 47 48

Suffering in Chronic Mental Illness Francine Coumos

53

Reflections on Suffering Prompted by ALS Claire F. Leach John Kelemen

57

The Disease Aspects of Suffering Sources of Suffering in ALS Kinds of Suffering Suffering and End Stage Renal Disease Kenneth Trachy Cancer Patients and Radiotherapy: Close Encounters of a Third Kind Lynda R. Mandell Tapan Hazra Henry L. Tomlin

58 58 60 65 69

79

Experiences in a Hospice: The AIDS Patient Sister Patrice Murphy

87

Suffering

93 Leonard M. Liegner

Home Care for the Dying Child with Cancer: Feasibility and Desirability Ida M. Martinson Background Purpose Methods Results Discussion Implications for Nursing

97 97 99 99 102 111 112

Euthanasia and Moral Stress Bernard E. Rollin

115

On the Value of Suffering in the Shadow of Death David Wendell Moller The Human in Suffering The Denial of Suffering A Note on Victor Frankl A Concluding Statement

127

Suffering and Pain Martin H. Blitzer

137

Death and Growth: The Problem of Pain Allen P. Fertziger Pain: The Crucial Link Between Death and Growth The Metaphysics of M ind

141

The Child and Suffering: The Role of the School Robert G. Stevenson Reactions of the Schools Positive Beginnings

151

Spiritual Support for the Suffering: Clergy Attitudes Toward Bereavement Kenneth J. Doka Michael Jendreski Introduction Rubbing Salt: Dysfunctional Responses Enhancing Effectiveness Conclusion

128 129 133 136

142 147

152 152 155

155 156 158 159

A Pastoral View of Widowhood Carole Smith Torres

161

Push Back the Curtain of Darkness T. Earl Yarborough

165

Aspects of Anxiety: Financial Concerns When Death Is Imminent Gerald Rosner Suffering and the Quest for Meaning Jeffrey A. Watson Introduction I. Is There Meaning in Suffering? II. How Does One Assess Higher Meaning in Suffering? III. How Does Holistic Spiritual Care Interpret Meaning in Suffering? IV. Conclusions and Applications to the People-Helping Role “ And Day Brought Back My Night” Elizabeth K. Hill

171

175 175 176 179 182 185 189

EDITOR-IN-CHIEF AUSTIN H. KUTSCHER, President, The Foundation oflhanatology, New York, NY EDITORIAL BOARD VIRGINIA W. BARRETT, RN, MEd, Community Health Nursing Consultant, Center for Geriatrics and Gerontology, Columbia-Presbyterian Medical Center, New York. NY RICHARD S. BLACHER, MD, Professor o f Psychiatry and Lecturer in Surgery, Tufts-New England Medical Center, Boston, MA JOHN G. BRUHN, PhD. Dean, School o f Allied Health Science, Vie University o f Texas Medical Branch, Galveston, TX PENELOPE BUSCHMAN, RN, CS, ANC, Assistant Professor o f Clinical Nursing, The School o f Nursing, Columbia University, New York; Administrative Nurse Clinician, The Presbyterian Hospital in the City o f New York, NY ARTHUR C. CARR, PhD, Clinical Professor o f Psychology, Cornell University Medical College, New York, NY DANIEL J. CHERICO, PhD, MPH, Assistant Professor, Department o f Health Care and Public Health, School o f Health and Public Service, C. W. Post Center, Long Island University, Greenvale, NY ELIZABETH J. CLARK, ACSW, PhD, Assistant Professor, Department o f Health Professions, Montclair State College, Upper Montclair, NJ SUSAN COHEN, CSW, ACSW, Director o f Counseling Service, The Animal Medical Center, New York, NY FRANCINE COURNOS, MD, Assistant Clinical Professor o f Psychiatry, College o f Physicians and Surgeons, Columbia University, New York, NY ROBERT DEBELLIS, MD, Assistant Professor o f Clinical Medicine (Oncology), College o f Physicians and Surgeons, Columbia University, New York, NY ALLEN P. FERTZIGER, PhD, Assistant Professor of Health Education, Department o f Health Education, Division o f Human and Community Resources, College o f Physical Education, Recreation aiul Health, University o f Maryland, College Park, MD MARK FLAPAN, PhD, Director o f Educational and Counseling Services, Scleroderma Society, Inc., New York, NY IVAN K. GOLDBERG, MD, Associate in Clinical Psychiatry, College o f Physicians and Surgeons, Columbia University, New York, NY ROBERTA HALPORN, MA, Thanatology Bibliographer, Brooklyn, NY FREDERIC P. HERTER, MD, Auchlncloss Professor o f Surgery, College o f Physicians and Surgeons, Columbia University, New York, NY JOSEPH JAFFE, MD, Professor o f Clinical Psychiatry (in Neurological Surgery), College o f Physicians and Surgeons, Columbia University, New York, NY ELIZABETH KRAJIC KACHUR, PhD, Assistant Clinical Professor o f Psychiatry; Coordinator o f Communication Skills Program, Albert Einstein College o f Medicine o f Yeshiva University, Bronx, NY MARJORIE PAWLING KAPLAN, Masters Candidate, School o f Public Health, Columbia University, New York, NY JOHN KIBRNAN, MBA, Administrator/Coordinator, Organ Recovery Program, The Presbyterian Hospital In the City o f New York, NY SAMUEL C. KLAGSBRUN, MD, Associate Clinical Professor o f Psychiatry, College o f Physicians and Surgeons, Columbia University, New York, NY; Director, Four Winds Hospital, Katonah, NY RON M. LANDSMAN, Esq., Landsman and Laster, Attorneys, Washington, DC JOHN L. LASTER, Esq., Landsman and Laster, Attorneys, Washington, DC; Adjunct Instructor o f Estate Planning and Probate, Institute o f Law and Aging, George Washington University, Washington, DC

ROBERT LYNN, MD, Associate Professor o f Psychiatry, Department o f Psychiatry,

New York Medical College, New York, NY BRIC R. MARCUS, MD, Assistant Clinical Professor o f Psychiatry, College

of Physicians and Surgeons, Columbia University, New York, NY THOMAS MCGOVERN, EdD, Assistant Professor, Department of Psychiatry; Director,

Bioethics Program and Director, Outpatient Chemical Dependency Program, Texas Technical University Health Sciences Center, Lubbock, TX DAVID K. MEAOHBR, EdD, Professor, Department o f Health Science, Brooklyn College, Brooklyn, NY JOANN MERRY, RN, MEd, Director of Continuing Education, School o f Nursing, Columbia University, New York, NY DAVID MOLLBR, PhD, Indianapolis, Indiana KARIN MURASZKO, MD, Resident In Neurosurgery, College o f Physicians and Surgeons, Columbia University, New York, NY REV. BRIAN O'CONNOR, Pastor. Si. Anselm’s Church, Bronx, NY ELIZABETH R. PRICHARD, ACSW, Former Director o f Department o f Social Work Services, The Presbyterian Hospital in the City o f New York, NY JUDITH QUATTLEBAUM, President and Executive Director, National Committee on the Treatment o f Intractable Pain, Washington, DC SUSAN J. QUINN, RN, MEd, Administrator/Coordinator, Oncology Unit, Columbia-Presbyterlan Medical Center, New York, NY JOHN D. RAINER, MD, Professor o f Clinical Psychiatry; Chief o f Psychiatric Research In Medical Genetics, College o f Physicians and Surgeons, Columbia University, New York, NY MARILYN M. RAWNSLEY, DNSc, Associate Dean o f Nursing, Pace University School o f Nursing, Pleasantville, NY GERALD ROSNER, CLU, Executive Director, PM Planning Company, New York, NY DAVID PRICE ROYE, JR., MD. Associate Professor o f Orthopedic Surgery, Department o f Orthopedic Surgery, College of Physicians and Surgeons, Columbia University, New York, NY JOEL SAVISHINSKY, PhD, Professor and Chairman, Department o f Anthropology, Ithaca College, Ithaca, NY DANIEL J. SCHAEFER, Funeral Service, Brooklyn, NY ARLENE SEQUINE, EdD, Associate Professor o f Gerontology and Thanatology, Hunter College of the City University o f New York, NY FLORENCE SELDER, RN, PhD, Associate Professor and Urban Research Center Scientist, University o f Wisconsin, Milwaukee, Wl MARY-ELLEN SIEOBL, MSW, ACSW, Department o f Community Medicine (Social Work), Senior Teaching Associate, Ml. Sinai School o f Medicine, New York, NY MARC D. SMITH, PhD, Assistant Professor, Health Administration Program, Washington University School o f Medicine, St. Louis. MO CHAPLAIN CAROLE E. SMITH TORRES, Pastoral Associate, Department o f Pastoral Care, The Presbyterian Hospital In the City o f New York; Conservative Baptist Mission Society, Staten Island, NY WILLIAM J. SOBOTOR, Assistant Professor and Instructor, Radiation Therapy Technicians Program, Upstate Medical Center, Syracuse, NY ROBERT G. STEVENSON, EdD, Instructor o f Death Education Programs o f Riverdell Regional School; Fairleigh Dickinson; and Bergen Community College, NJ LESLIE M. THOMPSON, PhD, Provost of Graduate Studies, Texas Women's University, Denton, TX RICHARD TORPIE, MD, Associate In Radiology, Department of Radiology, St. Like's Hospital, Bethlehem, PA

EDITORIAL ASSISTANTS FREDERICK EHLERT, Medical Student, Class o f 1986, Columbia University, New York, NY EUGENE HOFFERT, Medical Student, Albany Medical School o f Union University, Albany, NY STEPHEN LUBOWE, MS, independent Scholar, Thanatology, New York, NY HILDA QUILES, RDH, Dental Service Clinic School o f Dental and Oral Surgery, Columbia University, New York, NY ROSEMARY SCHIFANO, Doctoral Candidate, Fordham University, Bronx, NY FRED SCHWARTZ, New York, NY

T h is p a g e intentionally left blank

Suffering Psychological and Social Aspects in Loss, Grief, and Care

T h is p a g e intentionally left blank

Patients’ Wants and Needs: The Physicians’ Responses William F. Finn

THE CLINICAL ENCOUNTER How does the clinical encounter begin? Two fellow human beings meet. One requests, the other responds. The request is initiated by the soon-to-be-patient. He brings his wants, needs, pains, and suf­ fering to another who is specially trained, professes to be able to help, and is licensed to do so. At this meeting, the patient tells the physician about his pain and suffering. The physician responds by examining the patient, performing laboratory tests, and prescribing medicine, changes in life style, or surgery. This process adds the new dimension o f patienthood to the individual’s suffering. It can only be awarded to a patient after the therapeutic encounter has oc­ curred. The mode of access to patienthood is a home visit by a doctor, a prospective patient’s visit to a physician’s office, a clinic, or an emergency room, or the patient’s admission to a hospital or institu­ tion. Office visits are voluntary. Patients come after treatments they have tried by themselves have failed. They still have pain and are not getting any better. They have become concerned and now have added physician suffering to physical distress. Physicians have vol­ untarily chosen their profession because o f their concern for the woe and weal of others (Blum, 1980). They are prepared for clinical en­ counters by their knowledge and many altruistic emotions. They meet their patients’ pain and suffering with concern, sympathy, and compassion. Patients’ needs evoke a corresponding obligation. Of course, many visits to physicians do not involve the full patientphysician relationship. Such visits include those made for examina­ tions to qualify for insurance, workers’ compensation, military William F. Finn, MD, Associate Professor of.Gynecology, Cornell University Medical College, New York, New York; Honorary Gynecologist, North Shore University Hospital, Manhasset, New York (3 Aspen Gate, Manhasset, NY 11030).

2

SUFFERING

induction, and summer camp, and those made because of minor ill­ nesses. A first visit to a new doctor may also be incomplete. Physi­ cians in these relationships have divided allegiance. Because a third party is represented in each such encounter, the doctor-patient rela­ tionship can never develop into a therapeutic covenant. Complete or perfect relationships result from a visit to “ my” doctor for the treat­ ment of a serious illness or for prolonged chronic care. Many en­ counters are casual, lasting only for one illness and therefore do not build into a permanent relationship. According to Agick (1983), a therapeutic relationship “ in general is a relationship between an individual who is seen as suffering from some defect, disability or discomfort and a practitioner who pos­ sesses a specific technical skill or knowledge and occupies a recognized social role.” The purpose of this relationship is to restore the well-being of individual sufferers. Practitioners who are recognized as such employ their special knowledge in this endeavor. This stresses the impersonal technical features of the encounter. Other authors have alluded to the humanity of both participants. Buber (1958) decried the depersonalization of human relations: “ If I face a human being as my Thou and say the primary word I - Thou to him, he is not a thing among things and does not consist of things.” Ramsey (1970) was one of the first to regard patients as people. He urged treatment of the person, not the disease. Engel (1980), discussing the biological, sociological, and psychological aspects of the doctor-patient relationship, expressed the hope that it “ will include the patient and his attributes as a person.” Maier (1983) has stated that “ the outstanding illness society faces today is the dehumanization of medical care. The patient is more than a body and, therefore, surely more than his disease. Only by utilizing our knowledge of man and undertaking his medical care with the full knowledge of human needs can medicine become the art it should be, in addition to the science it is.”

HEALTH, ILLNESS, AND D ISEASE Health can be equated with well-being, normal functioning of the body, and a sense of ease. All of the individual’s physiological pro­ cesses are progressing without variation. Is there a difference be­ tween illness and disease? When individuals feel pain or become conscious of an impairment of their function, they perceive that

William F. Finn

3

something is wrong. They are ill. This subjective awareness o f vari­ ation from the biological norm constitutes illness. This internal con­ sciousness can be objectified into disease. After performing physical and laboratory examinations, a physician dignifies this collection o f sensations and symptoms with the designation o f a specific disease, which thereby attains an objective existence independent o f its possessor. Treatment efforts may be directed toward eradication o f the disease with scant attention to the individual in whom it is em ­ bodied. For minor, run-of-the-mill disease, this is adequate, although it may not be the optimal approach; for serious dysfunc­ tions or life threatening diseases, it is inadequate and inappropriate. Attention must be directed to the disease, but even more respect must be paid to the human sufferer. Cassell (1982) has said that “ The physician does not treat disease, but he treats patients who have diseases.” He further distinguishes between the disease o f an organ and the illness o f a whole person. He thus forcibly emphasizes that although only one part o f the patient may be diseased, the whole person is involved by the illness. Seldin (1981) has summarized his view this way: “ Medicine is a discipline which subserves a narrow but vital arena. It cannot bring happiness, prescribe the good life, o r legislate morality. But it can bring to bear an increasingly powerful conceptual framework for the mitigation o f that type o f human suffering rooted in biomedical derangem ents.” This restricts medicine to its proper function, the detection and treatment o f disease and the simultaneous relief o f pain and suffering. Webster defines “ patient” in two ways: (1) A person under the care o f a physician and (2) one who suffers or en­ dures from, L. patieantia. Over two thousand years ago, Hip­ pocrates assigned to medicine the tasks o f eliminating the suffering o f the sick and lessening the violence o f their diseases. Culver and Gert (1982) revived the old French term o f malady to describe a condition that involves a person in suffering or in the increased risk o f suffering an evil. T o them , evils include death, pain, and disabili­ ty, as well as loss o f freedom, opportunity, and pleasure. Their em ­ phasis is on actual or potential suffering. Although Boorse (1981) is conceptually correct in distinguishing between disease and illness, he uses these terms in just the reverse o f the way they have been used by most other authors. According to his definition, “ A disease is an illness only if it is serious enough to be incapacitating, and therefore is (1) undesirable for its bearer; (2) a title to special treat­ ment; and (3) a valid excuse for normally criticizable behavior.” He

4

SUFFERING

loses the primacy o f illness as leading to the diagnosis o f disease. He also fails to stress the more serious nature o f disease. The central point o f all the above definitions is that variation from normal, whether caused by abnormality o f a function o f a structure, is first perceived by the person and then ratified by a physician.

P A IN A N D SU FFERING I shall assume that we are dealing with persons who are rational, competent, have free will, can exercise independent judgm ent, and can perform autonomous actions. However, many patients at the ex­ tremes o f life are deficient in competence and autonomy. Mental retardates never acquire these qualities; psychotic patients lose them. The physical and mental infirmities o f old age also make in­ dividuals vulnerable. Although it is more difficult to elicit informa­ tion about pain and suffering from persons who are not competent or autonomous, it is also necessary and obligatory for physicians to do so in order to unveil the sources o f their pains. Because pain is more objective than suffering, it will be consid­ ered first. There have been many explanations for pain. Webster states it is derived from L. peona, punishment or a suffering or an evil inflicted as a punishment for crim e, penalty, fine, o r an affec­ tion or feeling proceeding from a derangement o f function, disease, or bodily injury. Shaffer (1978) notes that pain has been regarded as an illusion, a warning signal, a retribution or penance for evildoing, the product o f wicked acts, and as a way o f improving human beings. Christian Scientists and adherents o f certain religions subscribe to the first theory. There is general agreement that pain alerts us to discover its cause and to treat it. The last three theories have religious overtones that are disregarded by nonreligious people. Disease occurs in progressively ascending steps o f complication, with corresponding increase in pain. Some diseases are curable in a short time. Some become chronic. The level o f pain varies propor­ tionately. Pain may be constant or intermittent. There may be tem­ porary or a permanent disability. Some diseases are fatal immedi­ ately, some over a longer period o f time. Glaser and Strauss (1965) regard the latter type as having a longer trajectory. What are pa­ tients’ reactions to illness, pain, and suffering? Who wants to have pain? Patients’ first aim in seeing a doctor is to obtain relief from

W illiam /•'. Finn

5

pain, whether it is caused by a broken tibia or a perforated ulcer. Relief of pain is also important to doctors, but they may wish to establish a firm diagnosis first. After this has been done, effective treatment, as well as the administration of analgesics, will relieve pain. Patients may suffer because of disease per se. Weakness may confine one patient to bed; a cast may immobilize the leg of another. Multiple concerns affect patients’ suffering. Questions run through their heads: Are they going to be physically disabled? Will they ever work again? How are they going to pay for this? Are their doctors telling the truth? Do their doctors know what they are doing? The complexity of modern technologies for diagnosis and treatment add to patients’ anxieties and fears. Should pain always be treated? Most physicians regard relief o f pain as one of the primary goals of medicine. Pain can always be relieved, even though cure is not always possible. Intractable pain in terminally ill patients warrants and demands relief, even if their respiratory centers are so de­ pressed that respiratory arrest may occur. Petrie (1967) has observed that there is no simple, objective way of determining how much pain a patient is actually experiencing. He categorized patients as reducers, augmentors, and moderaters. Such individualization is absolutely essential to evaluate the degree of pain a person is experiencing and the amount of analgesic needed to relieve it. Pain is mental, psychical, and psychological, as well as physical. Edwards (1984) alludes to the “ pain of the soul.’’ He believes that there are generally unlocalized diffuse pains, such as anxiety, fear, depression, and anger, which represent the progres­ sion of pain to suffering. As he states, these pains remain a disagreeable reality that needs to be controlled. Pain in its totality should be treated. He adverts to the reciprocal relationship between physical and mental pain and tries to unite both dimensions “ in total pain.” Such a conception has been the basis of compassionate, ef­ fective medicine at all times everywhere. Two aspirins will help more if they are administered in a caring, concerned, and friendly fashion. This concept of “ pain of the soul” leads easily into the con­ cept of suffering. SUFFERING Since the beginning of the human race, people have wondered why they suffer: witness Job and his comforters. Webster defines suffering as the endurance of or submission to affliction, pain, or

6

SUFFERING

loss. Suffering is usually psychological rather than physical. It may be the effect of physical pain, but it can also be caused by distressing circumstances that arise in the process of living—having to deal with an unruly son, a seriously ill wife, or a daughter who is going through a divorce. Problems occur in infinite variety. Hence, the concerns, needs, and fears of patients differ. People are in constant flux at various phases o f life as well as at different stages of illness. Suffering varies with the type of personality, the type o f disease, the ambience, and the relationships among all these factors. Some of the most grievous suffering occurs with bereavement. Grief over the loss of a well-loved spouse causes more suffering than any other event in life. In this instance, suffering, in a reversal of the usual se­ quence, can excite pain. Loss of children, parents, or friends can give rise to suffering. The incorporation of the mind and emotions into the body is graphically illustrated by the occurrence of tics, spasms, and involuntary movements. There are many reasons why patients suffer. Among them are pain, loss of function, disability, chronic illness, failure to achieve relief from symptoms, the complexity o f treatment, unfavorable prognoses, expense of treatment, and the effects of disease on their families, friends, jobs, social position, and economic security. In sum, all of the ills to which flesh is heir may cause suffering of vari­ ous degrees. Reasonably competent persons may be overwhelmed by protracted illness, by multiple simultaneous disease such as lung carcinoma and aortic aneurysm, by recurrent disease that requires multiple operations, irradiation, and chemotherapy, and by diseases with ominous prognoses or potentially fatal outcomes. These situations can magnify suffering. It is interesting that many authors define disease in relationship to suffering. Suffering actually increases with disease. Confusion may be caused by the existence of a concurrent physiologic process, such as aging or menopause. Cassell (1976) emphasizes this, rejecting the historical dualism of mind and body. The concept of embodiment is used by Straus (1976) and MerleauPonty (1962). Such incorporation represents the unity of mind, body, and emotions. Cassell stresses the suffering that springs from patients’ feeling that they are disintegrating. The loss of physical in­ tegrity and the impending destruction of the unity of one’s person can cause profound suffering. Suffering varies with the magnitude of the disease and the personality of the sufferer. Cassell describes the transition from pain (illness) to suffering

William F. Finn

7

(disease) as occurring when the pain is out o f control. The dosage of medicine required is that which will achieve its goal, the relief of pain. Hence, it is difficult to visualize uncontrollable pain unless the patient requests noninterference or unless the physician is negligent. Cassell stresses the importance o f overwhelming pain in the creation o f suffering. He also states that suffering occurs when the source of pain is unknown. Uncertainty increases suffering in exponential proportions. He stresses, as well, the contribution o f continuous, unremitting, incurable pain to the production o f suffering. It is even more provocative o f suffering when a physician cannot validate the disease. The persistence o f pain and uncertainty about its cause pro­ duce a marked increase in suffering. There is an intimate relationship between pain and suffering that cannot always be recognized promptly. Moraczewski (1984) be­ lieves that people who are in pain have the right to determine, within the context o f moral obligations, the level o f pain they choose to tol­ erate. This privilege, perhaps even a right o f patients, requires that physicians, in turn, be willing o r obligated to respect their patients’ wishes, not simply out o f charity and humaneness, but out of justice. Thus, patients and their physicians can establish a special bond of trust. Such a covenant is one o f the most noble and revered associa­ tions between persons. As Moraczewski continues, “ Ideally, as healer, the physician employs not only his medical skills but also the totality o f his personhood. In such a harmonious relationship, suf­ fering and pain can be dispelled, even if not eradicated.” Cassell states that there are two ways to relieve suffering. First, the assignment o f meaning to an injurious condition often reduces or even resolves the suffering associated with it. The second way is through transcendence, the most powerful way o f restoring wholeness after injury to an individual’s personhood. Clinical ob­ servations confirm both o f these assertions.

TH E R E SP O N SE S OF P H Y SIC IA N S TO TH E N E E D S A N D W AN TS O F P A T IE N T S What qualities do patients and physicians bring to their encoun­ ters? The simplest way to describe this is to say that patients bring their needs and wants, while physicians bring responsive answers and actions. Patients’ needs and wants include emotions, which are usually transient. These needs also include more stable characteris­

SUFFERING

tics, including attitudes and dispositions that can be either specific or general. The sum of them is called character; individual segments are called virtues. The responses o f physicians are based on similar qualities. Virtue is hard to define. It has at least two meanings. In its com­ mon usage, it means morality. Conduct is virtuous when it conforms to certain standards that are called moral. Its second meaning con­ notes power or efficacy. Some of the best writing on virtue dates back to Aristotle (Tredonnick, 1953). He believed that the good man was the one who performed well the tasks that man performs for man. The aim o f ethics is to make us “ good,” expert or successful human beings. To achieve this goal, we must exercise our expertise to the best of our ability. Aristotle further stated that the mark of vir­ tue is to take pleasure in virtuous action. However, if we find this difficult, self-mastery and perseverance are second best. When we act virtuously, we choose the excellent (the mean between excess and defect) in conduct. And so virtue is strengthened. Plato (1958) made one o f the earliest classifications of virtue. This listing of the cardinal virtues includes prudence (wisdom), jus­ tice, fortitude (courage), and temperance (righteousness). Aristotle (Tredonnick, 1953) accepted the last three as moral virtues, but re­ garded wisdom as an intellectual virtue. He also included liberality, magnificence, magnanimity, patience, truthfulness, courtliness, friendliness, modesty, and righteous indignation. Aquinas (Farrell, 1941) accepted Aristotle’s classification and added three theological virtues: faith, hope, and charity. As Foot (1978) points out, most of these virtues pertain to the welfare of the individual who possesses them. Charity and justice, however, are beneficial characteristics that are concerned with the welfare of others. Hare (1981) refers to the intrinsic virtues, beneficence and justice; to the instrumental vir­ tues, courage, self-control, and perseverance; and to the virtues that are repetitious of prima facie moral principles, such as temperance. The descriptive titles explain their functions.

THE NEEDS AND WANTS (VIRTUES AN D VICES) OF THE PATIEN T Virtues pertain to all people, the healthy and the sick. Do some virtues or vices assume greater importance for those who are ill? For patients, loss of autonomy and competence parallels increasing

William F. Finn

9

dependence and vulnerability. A patient can be a person who is re­ ceiving treatm ent or one who is suffering. Most o f us think o f pa­ tients in the latter sense. Many adjectives are applied to patients. Physicians sometimes give high praise: “ This is an intelligent pa­ tient,” o r “ He cooperates.” On the other hand, they sometimes say “ The patient doesn’t do a thing I ask .” However, physicians are the determiners o f the virtues and vices o f patients. Patients may be sat­ isfied with their treatment o r discontented enough to initiate suits for malpractice. Petrie’s (1967) augmenters can create levels o f anxiety that make normal living impossible. Hypochondriasis is a further step. Such patients cannot be convinced that they are not ill, or that they are not as ill as they think. Some patients amplify every detail o f their condition, with no recognition o f what is significant. Some patients cannot tolerate any pain, o r even its suggestion. Some have no courage or stoicism. Some project blame on others, especially their spouses or children. Some, by their poor living habits, cause or aggravate diseases. Patients themselves cause our four most com ­ mon serious diseases. Emphysema and cancer o f the lungs, mouth, and throat might be reduced to a minimum if people would stop smoking. Obesity can only be self-induced. Alcoholism results in many diseases and accidents and the loss o f productive time. The last common disease, drug abuse, is also self-induced. Patients, however, have many virtues. Physicians like patients who are concise, arrive on time, and present an organized story o f their illness. Patients also endear themselves to physicians by com­ plying with their recommendations about medications, laboratory w ork, and follow-up visits. Two philosophers have itemized some o f the virtues o f patients. Jonsen (1983) lists openness, cooperation, honesty, and respect. Mutual respect is the firmest foundation on which to erect a patient-physician relationship that achieves the fullest therapeutic level o f benefit and satisfaction to both parties. Ruddick (n.d.) has attributed the following virtues to patients: confi­ dence in the good will and skill of physicians, temperance, stead­ fastness, hope, and courage. He likened the patient-physician rela­ tionship to that between an athlete and a coach. A patient’s attitude toward disease can affect it favorably o r unfavorably. For example, a determined patient will mitigate the effects o f a serious stroke by speech therapy and physiotherapy. A cheerful patient hastens recov­ ery and gains the added benefit o f more attention from nurses and physicians. Acceptance and acquiescence promote recovery when the outlook cannot be otherwise improved. Patients can help others

10

SUFFERING

by their inspiration and, in turn, be helped by their own hopefulness and courage. Sadness, unhappiness, depression, and despair can on­ ly make patients’ responses to illness worse. Joy and happiness can improve those responses. Although such emotions are often impos­ sible in the presence o f a painful or serious illness, there is always hope. Hope is often considered only in its theological meaning, but it has a realistic, commonplace meaning as well. Hope sustains mankind and combats despair. It is like the reappearance o f the sun after days of rain. It tells us that the future may be better. It urges the withdrawn to seek companionship with others. It may cure grief, inspire courage in the fearful, and help augmenters not to become hypochondriacs. It may replace projections o f troubles onto others by stimulating self-criticism and satisfy yearnings. It may, by setting a higher good, cure overeating and alcoholism. Although the virtues and vices mentioned have thus far been attributed only to patients, they are characteristic o f physicians as well.

D E SIR A B L E A N D U N D E SIR A B L E T R A IT S (V IR TU E S A N D VICES) IN P H Y SIC IA N S It is far easier to evaluate the pain and suffering o f patients than to determine what emotions, altruistic tendencies, and character traits constitute “ a good physician.” Knowledge, devotion, and courage are assumed to be basic to all physicians. Other virtues include kind­ ness, concern, sympathy, and compassion. A kindly disposition combined with altruism, a general concern ‘‘for the weal and woe” of patients, is the cornerstone. This affection for one’s fellow beings is not just an emotion, but a character trait. This virtue makes the physician ‘‘well affectioned” to others. This ever-present attitude fosters communication, encourages trust, and provides patients with a feeling o f confidence in their physicians’ concern for them. Webster defines sympathetic interaction as an affinity between persons, so that whatever affects one also affects the other. There is mutual reciprocal responsiveness. This community o f interests per­ mits intimate sharing between the partners in the therapeutic rela­ tionship. It is much easier to talk to a friendly, smiling, interested physician than to an austere, remote, apparently disinterested one. Sympathy progresses in natural fashion to compassion. Kunders (1984) has distinguished between the Latin derivation and the G er­ man, Eastern European, and Scandinavian meanings o f compassion.

William F. Finn

II

The Latin meaning involves suffering with another person and en­ compasses elements o f pity, but not condescension. Rather, there is awe based on a realization o f universal cosmic tragedy. There is in­ tense resentment at the unpredictability, violence, and ruthlessness o f nature and our fellow beings. The latter sense o f compassion ap­ peals to most people; it is feeling with others. Kunders writes, “ It signifies the greatest degree o f affective imagination, the art o f em o­ tional telepathy. In the hierarchy o f sentiments, then, it is suprem e.’’ Blum (1980) has described compassion even better: “ Compas­ sion is not a simple feeling-state but a complex emotional attitude toward another, characteristically involving imaginative dwelling on the condition o f the other person, an active regard for his good, a view o f him as a fellow human-being, and emotional responses o f a certain degree o f intensity.” This involves sharing our common na­ ture with other human beings. Compassion, as Blum writes, re­ quires the disposition to perform beneficent actions and to do so because the agent has imaginatively reconstructed another’s condi­ tion and has a concern for that person’s good. The sufferer benefits from awareness of the concern and the shared sorrow o f the com ­ passionate physician. Compassion is far different from commisera­ tion, which includes condolence, and may be appropriate only at times o f grief and bereavement. Commiseration may include pity, a weak emotion that gives any productive help to the sufferer. Some try to link empathy to these altruistic emotions. They feel that physi­ cians cannot be sympathetic or compassionate unless they visualize themselves in a similar difficult situation. Physicians, however, hold aloof from empathy. Their care and concern are directed toward fellow beings who are in trouble, but they do not have to imag­ ine themselves in the same circumstances as their patients in order to take care o f them. This list o f altruistic emotions is not exhaustive. Many emotions may be blended together or one may predominate. They are not transitory and inconsistent, but temporary reflections of the basic character traits that underlie them. Thus, without going to the Kantian extreme o f duty as the only basis for normal action, al­ truistic emotions provide a solid background for the practice o f medicine as a moral profession. Do physicians influence patients’ suffering? This question arises by cross fertilization from C assell’s (1982) germinal article. The in­ teraction between the physician and the patient or, more broadly, the interaction between the health care team and the whole family

12

SUFFERING

complex, produces many results other than healing. Physicians have much more knowledge of medicine and much more power than pa­ tients. Because of this inequality in the therapeutic relationship, en­ counters between physicians and patients may also cause or increase suffering. According to Pellegrino (1983), the basic fault of physicians is in­ competence. Some physicians do not keep abreast of the expansion of medical knowledge. Newspaper headlines, television, and maga­ zines make it obvious that the practice of medicine of the eighties is far more complex than that of the forties. Another problem comes from cold, austere physicians who are interested in the diagnosis and treatment of disease, but who have little or no interest in the people who harbor disease. Such physicians show no concern for the seething emotional worries of their patients. Fortunately, few physicians are arrogant. The occasional one who is treats patients as though they know nothing and are members of some subhuman species. According to McCue (1985) fatigue is common among over­ worked physicians and can cause serious errors in judgment. Fatigue also contributes to self-doubt and depression. Weary physi­ cians may take to the use of alcohol or sedatives, thus compounding their loss of function in the treatment of patients. All doctors realize their physical or emotional limitations but some do not seek help for their own illnesses or consultations with other physicians for their patients. Many times, physicians cannot cope with the uncertainties and ambiguities of medicine. A vacation, psychotherapy, or a change of specialty may help. The unavailability of physicians has caused much unnecessary suffering. If patients cannot talk to their doctors, the uncertainty of incomplete knowledge aggravates the anxiety and suffering caused by the disease process. Even when they are accessible, physicians may not answer questions, reply to phone calls, or explain medical matters in terms patients can understand. They may become irri­ tated by repetitive questions and fail to provide patients with infor­ mation about options or alternative therapies. Physicians may be brusque as they rush on to the next patient. These deficiencies are present in all physicians some of the time and in a few physicians all of the time. Fortunately, physicians also have many virtues. They rank im­ pressively high in public opinion polls. Their ability and knowledge are most important. With the exponential growth of knowledge, it is

William F. Finn

13

mandatory that they maintain their knowledge through continuing medical education, consultations, conferences, rounds, and meet­ ings. Physicians’ sympathy can even progress to empathy. They can learn to listen and gradually discover the meaning of illness to their patients. They can discuss with them the impact of their illnesses on their families and jobs. Many critics of medicine state that its big­ gest defect is the refusal or inability o f physicians to listen to their patients. Coupled with this is inadequate communication. How many doctors speak to their patients in common, everyday language, without using medical terms? How many answer ques­ tions cheerfully? How many provide choices? How many re­ explain? Next to incompetence, poor communication is the physi­ cian’s gravest debt. All members of the health team have some of these vices. If they can see illness from the vantage point o f patients, it provides new in­ sight into their worries and fears. Health professionals can be ac­ cessible in person or by phone. All communications can be con­ ducted not only as physicians to patient, but also as from one person to another. A smile, a touch, a necessary repetition or clarification fosters this relationship. Altman (1983) states that hospital patients suffer twice when staff members add insult to injuries. He eloquently illustrates the humilia­ tion of patients, the indignities and dehumanization that occur dur­ ing history-taking and the examination of patients. Swirsky (1984) refers to the decor and arrangement of physicians’ offices. She says, “ Those who desire privacy are expressly denied that right,’’ and further, “ Those who can change this, should.” THERAPEUTIC RELATIO NSHIP TO COVENANT Improving the relationship between physicians and patients will reduce suffering. How can this be accomplished? The best way is to develop and foster mutual respect. Patients already tend to respect physicians. This respect will stay and grow unless a patient becomes disillusioned by a physician’s incompetence, carelessness, or lack of concern. It is hard, if not impossible, to change the attitudes and methods of physicians who are not by nature kind, considerate, humane, and sympathetic. Seed, however, does sometimes grow on barren ground. By self-criticism, physicians can improve their methods of treatment of patients.

14

SUFFERING

We often refer to that intangible, “ bedside manner.” Like soup du jour, it is always different. It is the individual in action. It is be­ ing oneself. It is the most prized attribute in friends. It is genuine­ ness. It is exactly the same with physicians. When patients sense that physicians know, care, try hard, and are interested in them as suf­ fering fellow human beings, they are aware of that often-abused term, “ bedside manner.” Benjamin (1984) has suggested that physicians employ the healing power of their own unique personali­ ties, and even that they use the sense o f touch. Preserving and aug­ menting patients’ self-determination and freedom of action forges the links more closely. When the “ I ” in the physician treats the “ I ” in the patient, the happiest and most fruitful encounter evolves. Paternalism is a much-maligned word. But were not our own fathers good to us, many times to their own disadvantage? Strong paternalism may be the wrong approach, but weak paternalism per­ vades medicine. This promotes the advantage of patients. Those of us of the Christian tradition pray “ Our Father,” conceptualizing God as a father. This prayer is called The Lord’s Prayer because Jesus Christ gave it to his disciples when they asked him to teach them to pray. The best way to show respect is to spend some time with others and to talk to them. If this is done in an affable, tactful, and optimis­ tic but realistic fashion, mutual respect will grow. Communication with patients is one of the weak points of physicians’ training but, I hope, not of their natures. There is need for truth-telling. It is vitally necessary to listen and to talk to patients at the point at which they are psychologically present and, at times, just to sit and meander through conversation with them (Finn, 1979). Although this tech­ nique is absolutely necessary with dying patients, it also helps with patients who have chronic diseases or long-term disabilities. Indeed, it is useftil even in the first casual encounter in the doctor’s office. Doctors should never forget that patients also observe and respond to their body language—facial expressions, the lifting of an eyebrow, gestures, postures, and vocal inflections. Patients cannot and will not be deceived by words. They relentlessly see through lies, deceptions, and verbal placebos, promptly rejecting the un­ truths, and wondering why they are being treated that way. They know what a delayed or ambiguous response means. Two goals of physicians should be to preserve the autonomy of their patients and to have accurate, truthftil conversations with them. Their patients will then comprehend and act in a voluntary, self-determined fashion.

William F. Finn

15

ONE OF THE B E ST WAYS TO IMPROVE THE THERAPEUTIC RELATIO NSHIP IS FOR THE PHYSICIAN TO H AVE SUFFERED A SERIOUS ILLN ESS Physicians may react in a very objective manner to the diseases of others. How do they react to disease when they are the patients? Their responses are the same as those of any other human being. It has been said that fear of death is one o f the forces that leads to the selection of medicine as one’s life work. Medical students aspire to be in the inner circle, believing that this will protect them from disease and death. They soon learn that they are still as vulnerable as ever after their initiation into the holy mysteries of medicine. More­ over, their knowledge may lead them to direct their own treatment when they are ill. Their precise, detailed knowledge of disease, its prognoses, its progression, and its complications may deepen their depression and despair when they themselves become patients. Their understanding of the nuances and subtle changes in their own condition may turn their fear into terror. These points are illustrated vividly by Pinner and Miller (1952), whose perceptive analyses are based on autobiographical accounts given by sick physicians. Mullan (1983) also has written about his illness. A radiologist, Mullan looked at his own chest x-ray and discov­ ered a mediastinal seminoma. He has described his reactions to this discovery and its subsequent treatment, and has drawn several con­ clusions from his experience: (1) “ The modern medical center is a mosaic. It’s terribly important for physicians to recognize that, to understand how the perspective of the patient and that of the physi­ cian diverge.” (2) “ I can’t help but think that physicians, as they age and experience more infirmities of their own, gain a greater un­ derstanding of patienthood and human frailty.” (3) “ All of us are patients—it’s just that a few of us become physicians as well.” Sacks (1984) has written vividly about his mountain-climbing acci­ dent and injury. It is fascinating that a neurologist should suffer from a neurological disability. The old saw, “ Specialists die of their specialties,” applies here. A torn quadriceps muscle, some femoral neuropathy, and a floating patella combined to incapacitate Sacks. His is one of the most perceptive descriptions written by a doctor about his own disorder. Neurologists are typically cool, logical, reserved, introspective, and rigorous in their thinking. All of this appears in the chapters entitled “ The Leg” and “ Being a Patient,”

16

SUFFERING

and yet, inseparably enmeshed in his account is existentialism and phenomenology at its most penetrating. He recounts his injury, its early treatment, and his convalescence. His reflections on his two surgeons, one rigid and austere, the other perceptive, humane, and kind, are two of the best character studies of physicians in literature. The first surgeon in his practice of pure medicine excluded all the important questions of existence; the second surgeon included all the rich experience of sickness and health. The first practiced puppet medicine; the second engaged in person-to-person medicine. Sacks has elucidated his loss of affective senses, loss of body perception, loss of conceptions (body image), and finally, loss of self (body ego). He has illustrated the delightful inconsistency of human nature and the emotions that play a larger part than logic when accident and injury happen to oneself. Thomas (1984) has drawn two conclusions from his illnesses: “ One of the hard things to learn in medicine, even harder to teach, is what it feels like to be a patient.” “ Every young doctor should know exactly what it is like to have things go catastrophically wrong, and what it is like to be personally mortal. It makes for a bet­ ter practitioner.” Although physicians are anything but fools, like other people they act foolishly on occasions of deep emotional con­ cern. Experience with personal illness makes physicians more con­ scious of the concerns and fears of patients. This enriched under­ standing can make them better physicians. Medicine is more than a business contract or a relationship. It is a covenant. Ideally, the meeting of patient and physician begins as a casual encounter, with one human being seeking relief from suffer­ ing through the help of a skilled expert, hoping to be treated as one human does another. This meeting may progress to a more blinding relationship. Like a developing friendship, it may advance to a covenant. Covenants are based on trust; their character borders on the religious. One person as a patient hopefully encounters another person as physician. Most relationships are complete, with patients and physicians accountable to each other. Many authors, from Hip­ pocrates on, have commented on the obligation of patients to coop­ erate in effecting their cures. The goal of medicine is to do away with the suffering of the sick and to lessen the violence of their diseases. Centuries after Hippocrates, patients and physicians still profess this same goal. For patients, this is the primary goal, although, at times, physicians may make both patients and physi­ cians desire the same outcome.

William F. Finn

17

Physicians bring hum an qualities o f sympathy and com passion to the alleviation o f their patients’ pain and suffering. Can m edicine be practiced without these altruistic em otions? O bviously, the treat­ ment o f m inor illnesses rarely requires such qualities. H ow ever, deep personal concern for patients becom es m ore necessary during the prolonged treatm ent o f chronic diseases and diseases that may cause disability or death. Do all physicians have these altruistic sentim ents? Unfortunately, no. Some have a predisposition to them that adds to the likelihood that these virtues will flourish. It is interesting to speculate about the reasons why individual physicians choose particular specialties or switch from one specialty to another. W hy does one individual begin a residency in psychiatry after several years o f successful practice as a pediatrician? A re w omen physicians m ore com passionate than men? According to my observations, the accounts o f patients, and even interviews with fem ale physicians, they are not. O lder physi­ cians are usually m ore com passionate than others, but is this a result o f their tem peram ent o r o f the fact that they have lived longer and suffered m ore? Does the area in which m edicine is practiced in­ fluence the com passion o f physicians? T here would seem to be more need for com passion in the Bowery than on Park A venue, but is there? Physicians’ tem peram ents are modified by their experiences with patients who are enduring severe pain and, at tim es, over­ whelming suffering. These are the factors that develop altruistic atti­ tudes. At all tim es, medicine is a m oral profession. As Hippocrates w rote, “ I will keep pure and holy both my life and my a rt.”

R EFER EN C ES Agick, G. J. 1983. “ The Clinical E ncounter." In E. E. Shclp, ctl., Scope o f the Therapeutic Relationship. New York: D. Fcidcl Publishing Co. Altman, L. E. 1983. "H ospital Patients Can Suffer Twice When Staff Adds Insults to Inju­ rie s.” N ew York Times, Feb. 22. Benjamin, W . W. 1984. "H ealing by the Fundam entals." New England Journal o f Medicine 311:595-597. Blum, L. A. 1980. Friendship, Altruism and Morality. London: Routledge and Kegan Paul. Boorse, C . 1981. "M edicine and Moral P hilosophy." In M. Cohen, T. Nagel, and T. Scanlon, eds.. On the Distinction Between Disease and Illness. Princeton, NJ: Princeton University Press. Buber, M . 1958. I and Thou. New York: Scribner’s. Cassell, E. J. 1976. The Healer's Art. Philadelphia: J. B. Lippincotl Co. C assell, E. J. 1982. "T h e Nature o f Suffering and the Goals o f M edicine." New England Journal o f Medicine 306: 639-645.

18

SUFFERING

Culver, C. M. and B. Gert. 1982. Philosophy in Medicine. Oxford: Oxford University Press. Edwards, R. B. 1984. “ Pain and the Ethics of Pain Management/* Social Science and Medicine 18: 512-523. Engel, G. 1980. "The Clinical Application of the Biopsychosocial Model.” Ameri­ can Journal o f Psychology 137: 535-544. Farrell, W. 1941. A Companion to the Summa. New York: Sheed and Ward. Finn, W. F. 1979. “ The Dying Human.” In A. deVries and A. Carmi, cds., Do You Really Want to Know That You Are Dying and Will Your Doctor Tell You? Ramat Gan, Israel: Turtle Dove Publishers, pp. 171-180. Foot, P. 1978. Virtues and Vices. Berkeley: University of California Press. Glaser, B. G. and A. L. Strauss, 1965. Awareness o f Dying. Chicago: Aldine Publishing. Hare, R. M. 1981. Moral Thinking. Oxford: Clarendon Press. Jonsen, A. R. 1983. “ The Clinical Encounter.” In E. E. Shelp, ed., The Therapeutic Rela­ tionship. Boston: D. Rcidel Publishing Co., 266-286. Künders, M. 1984. “ The Unbearable Lightness of Being.” (March). New Yorker. Lloyd, G. E., cd. 1984. Hippocratic Writings. Translated by J. Chadwick and W. N. Nann. New York: Penguin Books. Maier, D. M. 1983. “ The Physician As a Man . . . The Man as a Physician.” New York State Journal o f Medicine (May): 813-816. McCuc, J. D. 1985. "The Distress of Internship.” New England Journal o f Medicine 312: 149-152. Merleau-Ponty, M. 1962. The Structure o f Personality. London: Routledge and Kcgan Paul. Moraczcwski, A. S. 1984. "The Ethical Management of Pain.” Ethics and Medicine 9: 1-3. Muilan, F. 1983. "The Physician as Patient." American Medical News, June 17. Pellegrino, E. D. 1983. "The Clinical Encounter." In E. E. Shclp, ed., Vie Healing Relationship: Vie Architectonics o f Clinical Medicine. Boston: D. Reidcl Publishing Co., 153-172. Petrie, A. A. 1967. Individuality in Pain and Suffering. Chicago: University of Chicago Press. Pinner, M. and B. F. Miller. 1952. When Doctors Are Patients. New York: W. W. Norton and Co., Inc. Plato. 1958. Vie Republic. Translated by B. Jowett. New York: Random House. Ramsey, P. 1970. Vie Patient as Person. New Haven: Yale University Press. Ruddick, W. (n.d.) Patient Morality-Compliancy, Perseverance and Other Athletic Virtues. NYU Library, B2184 (unpublished). Sacks, D. 1984. A Leg to Stand On. New York: Summit Books. Scldin, D. 1981. "The Boundaries of Medicine.” Translations of the Association of American Physicians. Shafer, J. A. 1978. "Pain and Suffering.” In Encyclopedia o f Bioethics, Vol. 3, pp. 1181-1185. Straus, E. 1976. Phenomenological Psychology. New York: Basic Books. Swirsky, J. 1984. "Enough Rigors For Any Patient to Endure." New York Times, June 24. Thomas, L. 1984. "Why Every Doctor Needs to Get Sick." Medical Economics, Feb. 6: 259-286. Tredonnick, M. 1953. V\e Ethics o f Aristotle. New York: Penguin Books.

Suffering and Autonomy Frances L. Drew

Cassell’s (1982) definitions o f suffering and personhood are both lucid and provocative. He dissected the nature o f “ person” and ana­ lyzed the dissected parts. I have read his paper many times, wonder­ ing what else could be asked about the matter and I wish to make one further extension to his discussion. He spoke o f the anatomy o f per­ sonhood; I wish to speak o f its physiology. Although Cassell alluded once directly and several times indirect­ ly to “ powerlessness” (the direct reference is associated with hope­ lessness and helplessness, its near cousins), he never defined the in­ tact person as having both the power and the necessity to act in order to express personhood. Each o f the subdivisions he delimited imply power in the form o f autonomy, imply choice o f action within the limits o f the conscious mind (and perhaps even in the unconscious mind). However, in my opinion, he did not sufficiently emphasize the suffering consequent to any loss o f power in whatever sense the patient may have felt powerful. I believe that this loss is, for most critically ill patients, the ultimate loss and the ultimate cause o f suf­ fering. Autonomy is a very fashionable word these days in philosophic circles, although it is almost inevitably used in discussions o f deci­ sion making and informed consent. However, autonomy as a con­ cept reaches far beyond that. Autonomy invariably encompasses ac­ tion as a member o f a society, as a sexual being, as a personality, as a family mem ber—indeed, action in every aspect o f personhood. Persons behave as persons only by performing certain acts. I sug­ gest that most suffering derives from the inability to control the ac­ tions that usually define one’s person. Cassell’s patient was fully in­ formed about her illness and participated in decisions all along the way, but she was not able to function as a person—she was no longer autonomous. It is my thesis that the medical profession has Frances L. Drew, MD, Professor o f Community Medicine, University o f Pittsburgh, Pittsburgh, Pennsylvania.

19

20

SUFFERING

many opportunities to restore lost autonomy, but we seem to miss them all. In some cases, autonomy can be restored to a patient by informa­ tion alone. The patient I recall most vividly was a twenty-year-old soldier who had an advanced malignancy and was deteriorating rapidly in a veterans’ hospital. His mother insisted that under no cir­ cumstances should the patient be told o f his diagnosis or prognosis. She was a bossy woman whom the residents obeyed. The patient was losing weight rapidly, was depressed and withdrawn. One day a very reserved and competent medical student was in the room. The patient must have sensed some affinity with the quiet student and asked suddenly, “ Do I have cancer?” The student, taken aback, blurted out “ Y es” and the patient said only “ T hanks.” Some hours later his mother found out what had happened and caused a great disturbance on the floor, attacking everyone in white, from the orderly to the chief o f staff. But curiously enough, the patient’s de­ pression lifted, he ate better, his pallor lessened, and he gained weight. He was just as sick as he had been, but he was suffering con­ siderably less, not only because the unknown had become known but because he now could make decisions for him self with confi­ dence that he knew the facts o f his own life. Perhaps he needed to say something to a friend, perhaps he needed the information to write his girl, perhaps he needed to be sure his dog was looked after by a cousin—but whatever he felt he had to do, whatever actions were necessary to him, he now had the autonomy to accomplish and, as a result, he suffered less. If we look at any hospitalized patients having almost any disease, and if we listen to them carefully, we will hear that they suffer just from their hospitalization. Let us consider a man who is being ad­ mitted for cataract removal. He is healthy, he walks confidently into the hospital aware that he has a small and irritating problem that needs to be “ fixed” —it is almost as though his car needed a new ig­ nition switch that a mechanic was to put in place. He knows the surgery will be painless and the risks minimal. The expected result is excellent: his vision will be restored to near normal. What he does not know is that for 48 hours he will be rendered powerless, he will feel demeaned, he will suffer. He will eat when and whatever the hospital decrees; he will sleep (or try to sleep) at a time convenient to others rather than to him; he will be awakened several times dur­ ing the night to have his temperature taken and then be awakened again at an unusually early hour by invasive noises from the cor­

¡■'ronces L. Drew

21

ridor; he will be confined to one corridor o f his floor, not free to wander through the rest o f the hospital. O f course he expects to sub­ mit to blood-lettings and pill-takings, but he does not expect to have his life run for him by forces over which he has no control. Granted that he will not suffer very much during a two-day stay, but he will suffer and entirely because o f his lack o f autonomy. It is certainly within the power o f our profession to lessen this modest suffering. We could write orders saying that some patients need not have their tem perature taken during the night, we could try to convince hospital administrators that patients who are ambulatory should be allowed to eat in the cafeteria, and we could even make a fuss about the intolerable noise level o f most wards. But we don’t. Between my hypothetical cataract patient and those who are m or­ tally ill there is that population of patients who have chronic diseases that do not immediately threaten their lives, but do limit and disrupt them. This group includes, among others, patients in chronic car­ diac failure, diabetics with increasingly blocked arteries, those who have emphysema, and severely arthritic patients. One such patient was a man who had early retinitis pigmentosa, an ophthalmologic disease with an uncertain prognosis. I knew next to nothing about this disease at that time. The patient was under the care o f a compe­ tent ophthalmologist, and I was treating his hypertension. He kept asking me questions I could not answer. “ Will I become totally blind? When? I ’m an insurance salesman and I travel a lot, drive a lot, read a lot. How long can I continue this? Should I be learning how to be blind now?” Because I didn’t know the answers to any of his questions, I called his ophthalmologist and discovered to my hor­ ror that he him self knew very little about blindness and, further­ m ore, that he didn’t consider it his business: sighted people were his business, not blind ones. The answers to my patient’s questions were only forthcoming when I contacted the local Association for the Blind and learned a great deal about the paramedical world o f retraining. Once both my patient and I were armed with all the available information, he was able to make sensible decisions about his future. Only then did he regain autonomy. He had suffered a great deal since his original di­ agnosis, haunted by the thought o f blindness, with all its social and financial implications. He had suffered from a vast unknown. When he was introduced to the multitude o f retraining programs and rec­ ognized that blindness, even at its worst, would not reduce him to total dependency, his suffering decreased sharply because he could

22

SUFFERING

plan and, if necessary, he could act. In addition, his hypertension disappeared. The point is that my patient’s ophthalmologist had within his power the alleviation o f suffering and the giving o f autonomy, but he did not perceive this as his responsibility to his pa­ tient. To consider a hypothetical “ worst c a se ,” we can imagine Cassell’s sculptor several months after he described her. She cannot walk, she is bedridden in a hospital, she has used up the possible curatives—radiotherapy and chemotherapy. H er baldness and her lack o f sexuality are no longer major causes of her suffering because she is “ out” o f society. The medical profession appears to have nothing further to offer her except painlessness that may border on stupor. I submit that they have many other things to offer. Privacy, for instance, if she wants to share her deepest emotions with a family member o r friend without having to include her roommate in the conversation. Do we make any effort to find a place where she can do this? Do we direct the nursing staff or the social worker to a r­ range for it? Do we urge either o f these members o f the medical team to confer with the patient about screening visitors who may be family but whom she may not wish to see, or other visitors who in­ trude on her waning energies and limited time? Do we really con­ sider what actions she may want to take to exert the autonomy we speak o f so glibly? Even if she only wants to eat an ice cream cone, do we make a serious effort to get her one? Let us go one step further. Suppose she is not one o f the fortunates for whom life has a transcendental dimension, for whom death not only offers release but a better world. She is in excruciating pain and death is too slow in coming. She has finished her life, but her body and her physicians are not as ready for death as she is. She has no tubes to hasten finality; if she fasts she will be importuned to eat and perhaps even fed forcibly. She has no available means o f suicide; she cannot act, even though she wishes to. Very few physi­ cians will help her by escalating her drugs; none will offer her a gun if she asks for one. H er helplessness is total, her autonomy nonexis­ tent, her suffering intolerable. If her situation were unique, she would cause our profession little concern, but there are thousands like her. A large measure o f their suffering is a result o f their impotence, their inability to act autono­ mously. What can we do to help them? Hospices have gone a long

Frances L. Drew

23

way by minimizing routines, offering drugs ad libitum, and perm it­ ting patients to make choices. But even hospices cannot offer a swifter death, cannot offer suicide as a choice, as an autonomous act o f personhood. Let us now suppose that this same woman is on a ward, one o f ten patients all o f whom are in the same situation. This is not an uncom­ mon occurrence. All o f these patients are depressed, in some pain, and exhausted by their diseases; all are powerless, and all have com­ pleted the unfinished business o f their lives. Suppose we were free to tell them that a routine order existed to provide each o f them with a cyanide capsule upon request? What would happen? I think several things would happen. I would wager that at most two o f the ten pa­ tients would request and use such a pill. In fact, I think it likely that none would. I would remind you that not to act is itself an action, a choice, an exercise o f autonomy. Giving these patients this choice would return to them the ultimate autonomy that they are now de­ prived of by our hospitals and our profession. I believe that such autonomy would lessen their suffering, enhance their broken dignity, increase their capacity to deal with their illnesses, and lift their de­ pression. There are, after all, precedents for social approval o f such a policy. For centuries, states and nations have offered their soldiers a swift means o f suicide “ for the greater good.” The United States has routinely supplied cyanide to aviators and spies. Are we assum­ ing that the “ greater good” only applies to national security and not to individuals? Far less opprobrium attaches to suicide today than did in Christendom even a decade ago. In Japan, suicide is still con­ sidered an honorable and acceptable act. Why should it not be available to patients who are too helpless to accomplish it by themselves? I must emphasize that I do not think it is the function o f the medical profession to decide whether or not such a policy should ex­ ist. That decision is a funclion o f Ihe society served by the profes­ sion. O ur role is to educate, perhaps to lead, certainly to support. If such a policy were accepted by society, we would then have the add­ ed role o f building safeguards to see that it was not abused. In my opinion, society's permission lo terminate o n e’s own life with digni­ ty and expediency would enormously decrease the suffering of a large number of people by returning to them the autonomy that the medical care system has taken from them.

24

SUFFERING

Few would choose suicide because hope is both a powerful and a long-acting drug, but they would all have had their personhood en­ hanced, their suffering diminished.

REFERENCE Cassell, E.J. 1982. "T he Nature o f Suffering and the Goals o f M edicine,” New England Journal o f Medicine 306: 639-645.

The Dying Patient: Physician’s Suffering Sally K. Severino Richard Friedman Pamela Moore

Physicians in all specialties are becoming increasingly concerned with the changing nature o f the suffering experienced by their pa­ tients, whom they are treating with ever more sophisticated chemo­ therapy and surgery. They are beginning to distinguish between the suffering that results from the course o f a disease and the suffering that results from treatment o f that disease. Issues o f this nature have been described by Cassell, who defined suffering as “ the state o f severe distress associated with events that threaten the intactness o f the person” (1982: 639). Cassell states that the person has many aspects which include the relationship o f his body, mind, and spirit to his family, friends, and social roles. Confirmation that a person has a life-threatening disease says to the patient that life will never be the same again. Every aspect o f his person will be affected. In attempts to understand personhood and the relationships o f its many aspects to illness, some have concentrated on the threat o f ill­ ness as a source o f suffering. In this regard, Kubler-Ross (1975) has emphasized the suffering resulting from the feeling that life no longer has value or meaning. Others have emphasized the threat to personal autonomy and identity (Pohlman, 1984), the threat o f loss (Schmale, 1980), the fear o f death (Edie, 1970), and the change in role relationships. Sally K. Severino, M .D ., is Assistant Professor o f Psychiatry, Cornell University Medi­ cal College-The New York Hospital (Westchcstcr Division), White Plains, New York (21 Bloomingdale Road, White Plains, NY 10605). Richard Friedman, M .D ., is Clinical Associate Professor o f Psychiatry, Cornell Univer­ sity Medical Collcge-The New York Hospital (Westchester Division), White Plains, New York (21 Bloomingdalc Road, White Plains, NY 10605). Pamela M oore, M .S.W ., is affiliated with the Admissions Office, Cornell University Medical Collcge-The New York Hospital (Westchcster Division), White Plains, New York (21 Bloomingdalc Road White Plains, NY 10605).

25

26

SUFFERING

We want to focus on the physician’s suffering. In particular, we want to focus on the physician’s suffering peculiar to members of a psychiatric staff confronted with a patient who is dying of a physical illness. What are the sources of this suffering and how does it affect the physician’s approach to the patient? Our experience with one chronically ill adolescent helped to clarify some of these issues. CASE PRESENTATION A seventeen-year-old girl who had metastatic medulloblastoma that was in remission was referred for psychiatric hospitalization by her oncologist, who was concerned that she was suicidal and starv­ ing herself to death. (The patient was 5'3" and weighed 64 pounds.) This girl’s posterior fossa tumor, diagnosed four years earlier, had been treated with surgery and radiotherapy. After these treat­ ments, she had experienced a stormy year complicated by hydrocephalus, shunt infection, and weight and hair loss. Despite these problems, she was able to return to school and complete one year before she became ill from spinal metastases, which were treated with chemotherapy and radiation therapy. Return to school was complicated by her withdrawal and increasing hopelessness. Her parents refused referral to a psychiatrist, but allowed the on­ cologist to prescribe antidepressant medication. The patient was able to continue going to school. Indeed, all evidence of her tumor disappeared, chemotherapy was discontinued, and she was in­ formed that she was free of cancer. Several months later, however, she developed difficulty in walking. Even though a hospital workup was negative, she began to talk of dying and stopped going to school. In this context, she was referred and admitted to a private psychi­ atric hospital unit that specialized in the treatment of depressed ado­ lescents and young adults. Upon admission, the patient stated, “ My cancer has come back.’’ Apathetic and hopeless, believing she was dying, she planned to take an overdose of drugs in about eight weeks, on her birthday. Although she was emaciated, she was alert and fully oriented. No signs or symptoms of a formal thought dis­ order were present. Physical examination revealed gaze-directed nystagmus in all gazes except straight-down gaze, mild dysmetria of the right lower extremity, a mildly unsteady gait with a tendency to go to her right, and normal muscle strength in spite of her decreased muscle mass.

Severino, Friedman, and Moore

27

During her two weeks in the hospital, the patient made it clear to everyone that life was meaningless to her. Her suffering was in­ creased by her hospitalization, partly because she felt more powerless than before and partly because she felt so different from the other patients: she was sane and dying: they were insane and try­ ing to kill themselves. On the other hand, her suicidal ideation de­ creased with her participation in the unit’s milieu therapy program. Visits home were planned to evaluate her level of function in that setting. While home, she developed headaches, dysarthria, and ataxia. A positive neurological examination led to her transfer to a general hospital medical ward, where a CAT scan revealed men­ ingeal métastasés. She died shortly thereafter, at home.

DISCUSSION This patient’s dying forced us to recognize the occurrence of suf­ fering among the physicians and staff who treated the patient. To re­ iterate the definition of suffering, it is a state of severe distress asso­ ciated with events that threaten the intactness of the person. Three sources of suffering seem to be illustrated by this case: 1. Identification with the patient’s and/or the fam ily’s suffering. This was most clearly seen in the social worker’s reaction to the pa­ tient. She identified with the suffering of the patient’s parents, ex­ periencing a reactive depression that made her unwilling to contact the patient. This identification also interfered with her ability to gather a detailed premorbid history from the patient’s parents, since doing so put her in touch with their painful memories. 2. Rekindling o f past personal sufferings by the patient’s presenta­ tion. Because of the special problems of patients on this particular unit, it is usual for the assistant unit chief to argue against the admis­ sion of any patient who might not fit into the unit’s milieu. In this in­ stance, the patient’s disease rekindled the assistant unit chief's mem­ ories of her husband’s death from a metastatic brain tumor. The pain of these memories rendered her unable to face a fight against the patient’s admission. For similar reasons, the patient’s admission caused suffering for the unit chief, whose wife was undergoing chemotherapy for breast cancer. 3. Challenge to the psychiatrist's sense o f self as knowing what is wrong and what to do. The procedure for admitting this patient to the hospital was unusual. Normally, patients are admitted on an

28

SUFFERING

emergency basis only after they have been evaluated by a psychia­ trist, who determines that they are a danger to themselves or others. In this instance, however, the parents’ panic, the oncologist’s con­ cern, and the patient’s cachectic and bald appearance, itself the em­ bodiment of suffering, immediately convinced the admissions psychiatrist that the patient needed admission. Hence, the patient was admitted without a thorough psychiatric evaluation. Her dif­ ferential diagnosis provoked anxiety. What was wrong with her? Was she free of cancer but experiencing a delusional depression? On the other hand, she was overreacting? Was this an endogenous depression in a medically ill adolescent? Could her cancer have recurred and be the source of her anorexia and preoccupation with dying? Did she have an organic brain syndrome with impaired cognitive and affective capacities? In all instances, the physicians’ suffering affected their ap­ proaches to the patient. The oncologist had clearly conceptualized his treatment of the patient’s cancer. When faced with the patient’s unexpected emotional reaction, he based his hope on psychotherapy and did not think of alternative plans. The admissions office psychi­ atrist, when faced with a dying patient, delegated ego functions to the oncologist by behaving as though the oncologist knew best. The unit physicians accepted the patient’s admission rather than arguing against it because of the rekindling of their own past suffering. Until after her admission, there was no clear conceptualization of the patient’s problem. No one thought to ask whether this patient and her family would be helped better by some course other than placing her in a psychiatric inpatient setting. As a result, without wanting or intending to, we increased the patient’s suffering by hos­ pitalizing her. In such unanticipated new situations, both parents and their physicians need to find meaning in the suffering caused by helplessness, changed relationships, and loss. Increased understand­ ing is needed of physicians’ suffering, its relationship to their pa­ tients’ suffering, and choices for dealing with both. Certain facts about this case were changed in order to protect the identity o f the patient.

REFERENCES Cassell, E. J. 1982. "T he Nature o f Suffering and the Goals o f M edicine.” New England Journal o f M edicine 306: 639-645. KUbler-Ross, E. 1975. Death: The Final State o f Growth. New Jersey: Prentice Hall, inc.

Severino, Friedttian, and Moore

29

Pohlman, E. R. 1984. “ Cancer Can Be as Trying on the Therapists as on Patients." Lecture delivered at 64th Annual Meeting of the Ontario Psychiatric Association, Ontario, Canada. Schmale, A. H. 1980. “ The Dying Patients." Advances in Psychosomatic Medicine 10: 99-110. Edie, J. M. cd. 1970. Patterns o f the Life-World: Essays in Honor o f John Wild. Chicago, 1L: Northwestern University Press.

T h is p a g e intentionally left blank

Suffering, Thanatology, and Whole-Person Medicine Lewis Penhall Bird

Academic credentials qualify a person on only one level to ad­ dress the theme o f suffering. Lest there be concern that these remarks come from an uninvolved health care ethicist—just another spectator to the incredible suffering humankind must endure—I of­ fer for review my own existential credentials, the litany o f my life with regard to the perplexing, depressing, and often infuriating problem o f suffering. I have no doubt that most people could match my personal survey o f suffering with their own stories. Indeed, we are in this dilemma together—pain does not diminish as quickly as we would wish, memories do not fade as much as we would hope. Just three weeks and five days prior to my fifth birthday, on Mon­ day morning, October 17, 1938, my beloved mother, Hettie, was wrenched from this earth through the agony and agency o f cancer. In the fourth decade o f life what was buried in the mist of my childhood memories came back to haunt me with questions that would not be answered, anger that would not be silenced, and pain that would finally find release. In the fall o f 1957, Tony, my closest roommate from college years, died o f a massive chest tumor at the age o f 24. He had already married and fathered a daughter. With his death, a promising career was ended almost overnight. For me, a dear friendship was ruptured right in the middle. Having grown up with two sisters, my closeness with Tony gave me the marvelous sense of having a brother. Thus, these two early encounters with the rude, arbitrary, and apparently capricious hand o f death, the first in my early childhood and the second early in my adult life, taught me rather quickly the precarious nature o f human life and o f human love. In the spring of 1963, I first discovered the small, nickel-sized Lewis Penhall Bird, Ph.D ., Co-Chairman, Medical Ethics Commission, Christian Medi­ cal Society, Haverton, Pennsylvania (2050 West Chester Pike, Havcrton, PA 19083).

31

32

SUFFERING

circles of hair loss in my scalp that indicate the presence of alopecia areata. By the fall of 1967, my hair loss had proceeded to alopecia totalis. Fortunately, my personality was well-formed by this thirtythird year of life and, as a bonus, my egg-shaped head was at least devoid of prominent bumps, bulges, and the kind of scrub-brush bulwarks that further diminish one’s sense of self-esteem. Just a year earlier, in 1966, my wife and I had discovered that we were among the 12-15 percent of all married couples (one out of nine) who taste the bitter disappointment of infertility. However, the good news came two years and then four years later, when we were able to adopt a daughter and a son—a solution that has proven, over time, to be magnificent. In this instance, sorrow preceded joy, grief preceded birth. In 1980, on Saturday morning, June 28th, sometime in the still darkness of early morning, the unpredictable happened again. At age seventy-seven, my father placed a single-barrel shotgun in his mouth and ended his life. In the midst of the debilitating limitations of old age—sight diminished, hearing reduced, steps more hesitant—and with the haunting memories of Hettie’s death persist­ ing, my father had vowed he would never die the agonizing death my mother had suffered 43 years earlier. Awareness o f fading physi­ cal abilities and obsessive fear apparently combined in my dad’s mind, leading him to pull the trigger and end the turbulence that swirled through his last days. The next year brought more grief. On the Tuesday before Christ­ mas, my beloved mother-in-law, Neva, mercifully died of breast cancer, which had ravaged her body for four years. Then, on the Tuesday after Christmas, my sturdy stepmother, Mary, died six weeks after being incapacitated by a series of massive strokes. To add to the daily burdens of life, my charming and cheerful wife has lived with a headache syndrome for over a decade, and small-back pain made its presence known two years ago. Under the cloud of this double dose of discomfort and often pain, she remains remark­ ably chipper, although philosophically numb. Enough of my pilgrimage in life. I have offered it only to show that my credentials on the subject of suffering are more than aca­ demic; that I can share in some of the pain others must feel, having lived their days in their own private crucibles. What do we make of suffering and thanatology? What do health care specialists typically make of suffering and thanatology? What do doctors, nurses, social workers, chaplains, aides, therapists, and even cleaning people

Lewis Penhall Bird

33

make of the baffling issues of suffering, pain, grief, and death that swirl in their own way, right now or, for example, in the mind of Mrs. Smith, upstairs in room 617? These questions are more than theoretical; they have an existential urgency in that how we answer them will make a difference tonight, tomorrow, next week, and next year, not only in the life of Mrs. Smith, but in the lives of all the other patients who will come under our care. One hypothesis that has teased my mind for years is that members of four historic professions ought always to be able, on any occa­ sion, to give a well-informed, ten-minute extemporaneous talk that would clarify the theme central to their vocation. Thus, members of the military would be able to define and defend just war theory, clinicians in medicine could describe and exegete the problem of suffering, attorneys in the practice of law could describe and defend their role in the question for justice, and theologians could explain how to find God in everyday terms. Alas, these are not necessarily the goals of our graduate schools in the great universities. O f the clergy I have encountered, perhaps 50 percent could get beyond Hebrew and Greek, demythologizing strategies, building-fund pro­ grams, or “ enabling” techniques to describe the pathway to God. With regard to the military, it turns out this year that my godson is now in his third year at the United States Military Academy at West Point. I asked him a few weekends ago, “ Would the average graduate of the military academy know and understand just war theory?” A bit to my surprise, and much to my delight, the answer was yes. Both in philosophy class and in military science, the sub­ ject is covered. However, something is apparently lost between West Point and the Pentagon. As for lawyers, I have long assumed that our judicial system is not terribly concerned with justice, but rather that attorneys take great pleasure in playing cat and mouse with the law and, not incidentally, in living in style. Twenty years of professional association with physicians has led me to conclude that little attention is focused, either in formal medi­ cal education or in clinical practice, on the problem of suffering. Whether at meetings of the Rotary Club, Kiwanis Club, the county medical society, or the staff lunch room, I think it would be rare to find a physician who could give an impromptu discourse on human suffering, sketching a broad outline of its clinical, philosophical, and moral boundaries. This is not to indict physicians, but only to underscore what I consider to be a major flaw in the accepted pro­ cess of their education. I contended that a clearer awareness of suf­

34

SUFFERING

fering’s characteristics could make medical treatment more humane, more sensitive, more personalized, and probably more cost-efficient. In its brief history, the hospice movement has demon­ strated all of these features (Ajemian and Mount, 1980), and the more credible advocates o f wholistic health care envision the same goals (Allen et al., 1980). Documentation for this lapse in medical education has been pro­ vided by Cassell (1982), who used the data bases in Index Medicus, Physical Abstracts, and the Citation Index to locate the meaning o f “ suffering.” He concluded: The obligation o f physicians to relieve human suffering stretches back into antiquity. Despite this fact, little attention is explicitly given to the problem o f suffering in medical educa­ tion, research, or practice. . . . The relief o f suffering, it would appear, is considered one o f the primary ends o f medi­ cine by patients and lay persons, but not by the medical profes­ sion. After tracing the pathway o f Cartesian dualism through the medi­ cal model of the past few centuries, Cassell (1982) argued that the modern clinical preoccupation with physical distress is often pur­ sued at the expense o f the larger levels o f patients’ suffering and stated that: The relief o f suffering and the cure o f disease must be seen as twin obligations o f a medical profession that is truly dedicated to the care o f the sick. Physicians’ failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source o f suffering itself. Over the next six months a sizable correspondence ensued; four letters were eventually printed in The New England Journal o f Medi­ cine (1982): the first spoke o f the necessity o f informed consent, the second defined the syndrome o f suffering as the experience o f a sig­ nificant loss; the third warned o f the iatrogenic suffering unneces­ sarily induced in too many patient experiences; and the fourth un­ derscored the dual needs for communication and compassion in patient care. Four worthy concerns not well-incorporated in modern

Lewis Penhall Bird

35

medical education; four concerns perhaps better caught than taught. Ironically, in checking Index Medicus, I was not surprised to dis­ cover that suffering is not an indexed category. One must turn to the subject of pain to find any related essays. Interestingly, on the page before the one on which the subject of suffering might appear is the listing for Sudden Infant Death Syndrome, and on the page follow­ ing is the listing for Suicide. Both of these are medical topics that in­ volve obvious and profound dimensions of suffering. As might be expected, the vast majority o f articles indexed focused narrowly on the medical management of these two problems. It is interesting to note that the codes and lore of medical ethics have, since antiquity, included the principle of the alleviation of human suffering. In the Prologue to the Ebers Medical Papyrus, an Egyptian formulation o f about 1600 B.C., these thoughts are under­ scored at the outset: “ Here begins the book of the preparation of medicine for all parts of the body of a person. The Lord of All has given me words to drive away the diseases of all the gods and mortal sufferings of every kind” (Bird, 1984). The writer of this ancient piece of wisdom did not hesitate to speak of “ the body of a person,” nor did he qualify the notion of treating “ mortal sufferings of every kind.” Hippocrates, writing on the art of medicine, said: “ I should state first of all what I believe to be its scope: to remove the suffer­ ings of the patient, or at least to alleviate these sufferings” (Bird, 1984). The Hindu physician Charaka, writing in the second century A.D. in the Samhita, offered this statement: “ Not for self, not for the fulfillment of any earthly desire of gain, but solely for the good of suffering humanity should you treat your patients, and so excel all” (Bird, 1984). The principle of the relief o f human suffering is woven into the historic fabric of the medical profession; it just has not been well-integrated into the clinical style of the average physi­ cian, whose management of pain receives most attention. This brief exploration of suffering as understood by classical scholars reveals that understanding is relevant to the role of alleviat­ ing human suffering. Shaffer (1978) has outlined the five most com­ mon philosophical responses to pain and suffering. They are: 1. 2. 3. 4. 5.

Pain Pain Pain Pain Pain

as as as as as

an illusion. a warning signal. retribution or penance for evil-doing. a product of wicked acts. a way of improving humans.

36

SUFFERING

The first viewpoint emphasizes delusional thinking and has had appeal mainly to Christian Science adherents and to Hindus. Ac­ cording to the second view, pain is an early warning system for the body; once it has relayed its message, however, its task is done and continuing pain does not necessarily have any profound meaning. Brand (1977), a distinguished orthopedic surgeon at the U.S. Public Health Service Hospital at Carville, Louisiana, has made a career of treating patients who have Hansen’s disease, o r leprosy. From this unique perspective, it is understandable that he can readily support this dimension o f understanding the value o f pain; “ Thank God for inventing pain. I don’t think He could have done a better jo b .’’ The third view sees pain and suffering as direct retribution for evil behavior. Obviously, breaking the moral laws o f the universe can have very painful results. The fourth category understands pain as a product of the wicked acts o f others, whether the problem be drunken drivers, toxic waste contamination, asbestos hazards, or the kinds of massive suffering this century has inflicted on innocent people through two world wars, genocide, civil wars, famine, and tyranny. Categories two through four make some sense to most o f us. The fifth viewpoint, that pain and suffering are a way o f improving hu­ man nature, gives us pause. No doubt this does occur—sometimes. The moral virtues o f courage, fortitude, patience, compassion, faith, hope, and love often find full bloom in times o f incredible distress. When C. S. Lewis was a Fellow o f Magdalene College (1940), Cambridge, he penned these provocative words: “ God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf w orld.’’ For those who have a theistic frame o f reference, this is a provocative state­ ment indeed. When incredible suffering arrives on our doorstep, the “ w hy” questions bedevil us. They haunt thoughtful medical minds as well. Why do innocent children sometimes suffer so cruelly? Why do young mothers die o f cancer? Why do whole families o f loving, contributing, decent people get slaughtered at one intersection through the witless drunken driving o f a teenage rebel? Why? Why? Why? My reading o f the literature, my counsel with victims, and my own personal experiences have led me to frame four responses to our constant search for meaning in suffering. Sometimes suffering will be meaningful, sometimes not; sometimes, it will be irrational,

Lewis Penhall Bird

37

and sometimes it will be irresponsible. To take the last first, we have all known irresponsible suffering inflicted by the insensitive, cruel hands o f our enemies or by those who plow through life oblivi­ ous o f the rights of others. The cause and effect at this level is be­ tween cruel or thoughtless actions visited upon innocent people and their sudden discovery that, through no fault o f their own, suffering has arrived again; the meaning is largely in being victimized. The larger search for meaning contains numerous pitfalls. Some­ times profound human virtues are cultivated and dimensions o f human growth give meaning to an accident or an illness. In these in­ stances, suffering is meaningful. But this is not always the case. I have in mind a category o f meaningless suffering that causes consid­ erable pain. I well recall driving alone, over a decade ago, on the New York Thruway between Rochester and Buffalo. My mind was racing with the question: “ Why did my mother die at age thirtyeight when I was not quite five? Why? I want an answ er.” As I was driving along and pounding on the locked door o f “ w hy,” the answer dawned on me like a bolt out o f the blue: the answer was—there is no answer. T hat’s it, my mind told me, you’ve found the answer, and it is: "T here is no answ er.” Finally my mind was freed from its quest and liberated to go about other things. There is some suffering in which no meaning is to be found, whether one is devout or not. Only neurotic minds need create artificial meanings at the moment, and those meanings will usually fracture under the pressure o f time. Ancient Israel knew what St. Paul, Augustine, Luther, and Karl Barth were later to discover: “ The just do, indeed, live by faith” (Habakkuk 2:4; Romans 1:7). They do so not by sight, not by answers, not with insights, but just with faith—a rather tough faith, I think. Then there is a new category in my mind o f irrational suffering in which no meaning is found, in which the neutral void o f meaning­ less suffering is not even useful, in which all o f the events and all o f the conclusions are irrational. An anti-reason motif prevails. For me, this new category underscores but one central truth: the knowl­ edge of the limits o f the rational. For us rationalistic humans who keep adding up the columns, keep reasoning through the circum­ stances, keep doggedly pursuing some reasonable outcome, it comes as quite a shock to realize the limits o f the rational. But it might not be a bad lesson in humility, a good course in learning more deeply o f our finitude. To have to function with a numb mind may not be pleasant, but it may be absolutely necessary.

38

SUFFERING

Turning to whole-person care, I do not have in mind the store­ front clinic that advertises astrology and chiropractic, sunflower seeds and yogurt. Having just spent a sabbatical reading and think­ ing through the promises of this conceptual model, I define wholistic health care as combining basic scientific medical care with an ex­ ploration of family systems and/or value systems when indicated (Bird, in press). For clinicians who are already systems-oriented, albeit toward physiological systems, I advocate the development of clinical skills in managing two more systems: family systems and value systems. This recommendation, which pertains to any special­ ty, would focus care more specifically than is conventionally done. Probably nowhere is whole-person care more clearly demonstrated than in the hospice movement. There, attention is directed to family systems—their needs, their support, their decision-making capaci­ ties, and so forth. Within this movement, attention to the patient’s value system, including concern for processing denial, guilt, bar­ gaining, depression, and the quest for meaning has been well docu­ mented. The spiritual dimensions of suffering are not ignored. To conclude, I offer seven principles to aid in caring for suffering patients: 1. Remember, institutions don’t dehumanize patients; their staff members do. Bricks and mortar, beds and walls address no pa­ tients; only the people who cross the life of each patient have it in their power to nurture or to intimidate. 2. Assume responsibility for the morale wherever you are in the chain of command; your life style can charm or it can chill. 3. Be a whole person yourself, even if you dwell in the midst of cynical health care providers. Cynicism mainly afflicts two categories of people: service professionals and public ser­ vants. A healthy sense of humor and a healthy attitude have ripple effects. 4. Do not add therapeutic ineptitude to the further suffering of the patient. Be skilled in the least of tasks as well as in the most painful procedures. 5. Be empathetic rather than sympathetic to patient’s needs; otherwise one can be emotionally devastated by human suffer­ ing. But be certain that your response to patients is empathetic and not apathetic. 6. Develop a repertoire of therapeutic one-liners. Because time constraints worry many clinicians in their concern for

L ew is P e n h a ll B ird

wholistic care, a few well-chosen words, therapeutic oneliners o f compelling insight, can lodge in the minds o f patients who suffer in silence. 7. Determine to touch the life o f at least one patient daily with some depth, regardless o f your place on the health care team. After a while, you can extend that level o f concern to a second and perhaps a third patient. Finally, Kushner (1981) reminds us that instead o f asking “ Why me?” It is better to ask “ Now that this has happened to me, what am I going to do about it?” Your task and mine is to help patients find the answer that is right for them.

REFERENCES A jem ian, 1. and B. M . M ount, cds. 1980. The R. V .li. M anual on Palliaiive/H ospice Core. N ew Y ork: A rno P ress. A llen, D . E ., L. P . Bird and R. L. H errm ann, eds. 1980. W liole-Person M edicine. D ow ners G rove, 1L: InterV arsity Press. T h e B ible, H abakkuk 2 :4 ; Rom ans 1:17. Bird, L . P . 1984. “ U niversal P rinciples o f Biom edical Ethics: T he A lleviation o f Human S u fferin g .” B ioethics N ew sletter (Journal o f C hristian M edical Society) 11(2) A pr. B ird, L. P . In press. Please Treat M e Right: W hole Person M edicine in C linical Perspective. B rand, P. 1977. C ited in P . Y ancey, W here is G od When it H urts. G rand R apids, M l: Zondervan, p . 21. C assell, E. J. 1982. " T h e N ature o f S uffering and the G oals o f M cd icin c,” 7he N ew England Journal o f M edicine 306: 639-645. Lew is, C . S. 1940. The Problem o f Pain. London: F ontana, p. 81. K ushner, H . K. 1981. When B a d Things H appen to G ood People. N ew Y ork: Schockcn Books, p. 136. S haffer, A . 1978. "P a in and S uffering: Philosophical P e rsp ectiv es." In W . T . R cich, cd. Encyclopedia o f B ioethics, V ol. 3. N ew Y ork: F ree P ress, pp. 1181-1184.

T h is p a g e intentionally left blank

The Pain of the Physician Richard S. Blacher

In this discussion of suffering, the thesis presented may sound somewhat odd. I shall make a plea for the understanding of, but not the condoning of, behavior by the physician which may seem cal­ lous, indifferent, and even at times cruel to the patient. I shall sug­ gest that incurable illness, or what may seem to be incurable, is a sit­ uation of shared suffering. The problem for the physician is one of converting his suffering into a helpful stance rather than one viewed as harmful by the patient; but this may, for all practical purposes, be an unrealistic goal. Medicine is not only a difficult profession, it may even be an impossible one as long as we cannot cure everyone. The physician has always been an ambivalent figure for patients; this did not begin with current, so-called “ scientific medicine.” We often think of the old family doctor who was not interested in the finer details of laboratory tests but who took care of the patient as a human being. This was so in past years and it continues to be so in many situations now. But if we look back to the ancient Greeks, there is Aristophanes writing “ Apollo the physician may cure them since he is paid for it” (Kaufman, 1976), reflecting the attitude of recent polls that show many people view all physicians as moneygrubbing, cold, and indifferent—all physicians, except one, their own. Patients have always had magical expectations of their doc­ tors, often viewing them as parent-surrogates. Ambrose Bierce, in his “ Devil’s Dictionary” (1946), defined a physician as “ one upon whom we set our hopes when ill and our dogs when well.” I think this expectation of physicians reflects the magical hopes we have that our physicians will be omnipotent parents and will cure our every pain. Such an attitude may be very helpful. It calms and reassures us when we come into the presence of our doctors. The danger lies in the physician’s making a similar demand on himself. Most medical Richard S. Blacher, M .D ., Professor o f Psychiatry and Lecturer in Surgery, T ufts—New England Medical C enter, Boston, M assachusetts (1419 Beacon S t., Brookline, M A 02146).

41

42

SUFFERING

students hope that unlike other physicians in the past they will cure everyone, and they find themselves crushed when early on they lose their no-hitters. We would like to see our physicians feel close to their patients and feel with them their suffering and pain. In theory, this is an ideal situation. In practice, it is very difficult for the physi­ cian who has a series o f dying patients to feel fully with them and not be devastated emotionally. In practice, physicians seem to titrate themselves, moving as close to their patients as they can and withdrawing emotionally when the pain and suffering become too great (Blacher, 1979). The very characterological features that en­ abled us all to get into medical school in the first place and become physicians, namely the ability to be precise and deal with small details, may be the characteristics that we fall back upon when things become intense. The physician then turns to laboratory tests and small details rather than appreciation o f the plight of the patient. A number o f years ago we did a project in the recovery room, studying how patients reacted in that setting (Winkelstein, Blacher, and Meyer n.d.). We were struck by the fact that the patient whose biopsy was negative had a stream o f visitors informing him o f the results. The surgeon, his assistant, the resident, the intern, the medi­ cal students, the nurses, even the orderlies would come into the re­ covery room and announce the results. If a biopsy was positive, there would often be no one at all. People enter the medical profes­ sions to help; when they find that they cannot give good news, they often feel terrible and impotent and they tend to retreat. In recent years, there has been pressure on physicians to be open and precise with information given to the patient. This may be more difficult for the physician at times than for the patient. I believe the difficulty explains the clumsy, and even apparently cruel, approach of some physicians to giving medical news. A week before term , a young mother-to-be was seen by a new member of her obstetrical group, her own doctor being in sur­ gery at the time. The new physician seemed visibly alarmed and insisted on an immediate echo study without giving any ex­ planation. The test was carried out early in the morning and the physician was unavailable throughout the day for the pa­ tient, who, understandably agitated, called frequently. Finally at six p.m ., he called back and announced that although the fetus’ head was normal there seemed to be some inhibition of growth in the body. “ What does this mean?” asked the pa­

Richard S. lUiwher

43

tient. The obstetrician answered, “ I have no idea since I ’m an obstetrician. You will have to speak to the pediatrician.” One can imagine the anguish o f this young woman and her husband as they spent the evening trying to find a pediatrician who could help them deal with some unknown findings in a hospital laboratory. After a sleepless night their own obstetrician was contacted. He discussed the case with the sonographers and reported to the family that the finding was insignificant. Nevertheless, one can imagine their relief when a normal child was born a week later. H orror stories o f this sort are repeated over and over in medicine. Although one’s first impulse is to shoot the physician, perhaps the second reaction is to feel a pang o f sadness that his own anxiety in the situation would allow him to act in such a callous way. I think it is fair to say that we should expect o f ourselves that we tolerate pain, the pain o f our patients, in a way that we would not ex­ pect our lay-fellows to do. This after all is one o f the requirements for being a worker in medicine. The basic difficulty lies, o f course, in our selection o f students for medicine, and this has been discussed at length by physicians, college educators, and by all the other po­ tential patients in our society. We cannot change the characters o f our students or o f our current physicians; we can only hope to influence them. As a colleague has noted, ‘‘If you want to make a silk purse out o f sow ’s ear, you had better start with a silk so w .” But given the current realities, perhaps some o f our efforts in dealing with patients’ suffering must be di­ rected to ways to relieve the physician’s pain. Discussion groups, support groups, and an integration o f these concepts into the medical school curriculum might be helpful steps in this direction. Most of all, we should recognize the problem and think o f solutions rather than solely o f condemnation. But until we are able to cure all pa­ tients, we must expect some problem with the doctor’s indifference and with indifferent doctors. REFERENCES B ierce, A. 1946. C o lla te d W ritings. N ew Y ork: C itadel Press. D lacher, R. S. 1979. " T h e Anxiety o f the P h y sician .” M an a n d M edicine, 4 :276. K aufm an, M . R .,1 9 7 6 . " T h e D o c to r's Im age: An A pproach to n Study o f a Universal A m b iv ale n c e." V ie Ml. Sinni J o u rn a l o f M edicine, 4 3 :7 6 . W inkelstcin, C ., D ladicr, R. S ., and M ey er, B. C . U npublished data.

T h is p a g e intentionally left blank

Repetitive Existential Plight: The Emotional Impact of Recurrent Serious Illness Robert Lynn

I gravitated into psychiatry after a lengthy career in oncology, having begun in 1964 as one of the first oncologists in New Jersey. My patients’ suffering was ever present. 1 witnessed it with as much empathy as I could expend without getting mired in it. The concepts of transference and countertransference, as well as “ burnout,” were as yet unknown to me. What has become evident to me over the past 20 years is the paradox that medical advances have pro­ duced increasingly innovative suffering. What has transpired is that there is greater chronicity to diseases than there was 20 years ago as a result of new discoveries in cellular dynamics and pharmacology. So-called “ cures” and long-term palliative survivals have ensued and these, in turn, have led to a host of new problems and, we might say, new kinds of suffering. Twenty years ago, the whole burgeoning morass called polyphar­ macy began with a simple trial of velban and chlorambucil for the treatment of Hodgkins disease (Lacher and Durant, 1965). Now a multitude of drug combinations are used in treatment protocols. The net results have not only been the extension of life for patients who have so-called terminal illnesses, but also enhancement of the quali­ ty of life. These are the results so many of us philosophized about and agonized over when we began to use drug combinations with the potential for dreadful morbidity hoping our statistics would show the increased survival times that would justify our studies. Neverthe­ less, our modern technologies have led to some new types of suffer­ ing; oncology in particular is responsible for one of these new variants. In 1976, Weisman and Worden of Project Omega at MassachuRobcrt Lynn, M .D., Associale Professor of Psychiatry, New York Medical College, New York, New York (5-6 Pond View Court, Ossining, NY 10562).

45

46

SUFFERING

setts Genera! Hospital described the occurrence of a period of psychological turmoil in cancer patients and termed it existential plight: The concept of existential plight is not a mere metaphor, but a distinct phase of cancer to which almost all patients are sub­ jected. Quite literally, it is a luckless predicament in which one’s very existence seems endangered. For some patients, the plight is very transient and scarcely troublesome. For others, it is a turning point because cancer aggravates or elicits a host of psychosocial problems which would not otherwise be there. Even unrelated personal and interpersonal events may require different coping strategies than those customarily used. It is the premise of this chapter that our success in improving the survival times of patients who have malignant disorders such as lymphomas, osteogenic and other sarcomas, Icukemias, breast can­ cers, and some lung cancers has now produced repetitive existential plight. Wcisman and Worden (1976) concluded that existential plight abated during the first hundred days after the diagnosis of cancer. Now, with recurrent disease, existential plight probably re­ peats with recurrence, especially when patients have accepted promises and predictions of “ cures” and control of their illness. We can probably extrapolate from the model of cancer, which is most familiar to me, to other serious illnesses. The concept of the recurrence of emotional problems with recur­ rent disease is not new. Schmalc (1976) discussed the reaction of pa­ tients to recurrences of disease and stated that the intensity of the re­ action is determined by several factors, including the patient’s age, past experiences, roles, family and social background, and areas of responsibility in career and work. He also concludcd that the input of caregivers also determines the patient’s ability to cope adequate­ ly. Herein lies the whole complex topic of transference and countertransference of caregivers: their reactions to treating patients who have chronic degenerative diseases that carry terminal prognoses, their own ability to tolerate chronic losses and defeat is like waging a Manichean battle against evil. Two cases vignettes of patients followed in my own practice illus­ trate what appear to be common coping styles. These coping strategies permitted these patients only partial adaptation to the existential plight of recurrent malignant disease and continuing

Robert l.ynn

47

courses of chemotherapy. Their families eventually “ burned out” and their physicians began to react to their “ doctor-shopping” and the narcissistic injury engendered by the patients’ quest for more and more consultations. CASE 1 P, a 40-year-old white male, was apparently in good health until October 1955, when he first noticed overwhelming fatigue and swelling of his left neck. A biopsy was performed and there was some difficulty in making a tissue diagnosis. Therefore, surgery was performed again, this time a left partial radical neck dissection. A diagnosis of Hodgkins disease was made. A pedal lymphangiogram, performed for staging, was negative. As a result, radiation therapy was given to the left neck only. After that therapy, the patient was told that because his disease had been discovered very early and had been localized, he was cured. He was apparently well until February 1972 when he again noticed enlarged lymph glands in both his left neck and axillary areas. Nodes biopsied from the left axilla were positive for Hodgkins; a liver biopsy was negative, but at this time he also had a mass in his anterior chest. What else was happening in the patient’s psychosocial history? The Hodgkins disease was discovered about two months after he had married. He had an excellent position in the management of a busi­ ness. After the recurrence of his disease, he worked a while longer for that company and then, for some reason, lost the job. He was given combination chemotherapy, using MOPP (nitrogen mustard, Oncovin, prednisone, and procarbazine). He was then maintained on single-drug therapy with velban alone. While on maintenance, he developed enlarged lymj>h nodes in his groin and was treated with an inverted Y-shaped port and some form of modified mantle port to the neck and chest. In 1974, he again developed recurrence in the left neck and was treated again with local radiation to this area. In 1976, nodes in his left neck enlarged again, and this time it was decided merely to observe them. Although by this time P had rebuilt a successful career, all the recurrences of his disease and the need for treatment caused him to be let go on medical disability. In 1970, he had become the father of a son to whom he was very devoted. After he began receiving disability, he was at home taking care of his son while his wife returned to work. As conjoint therapy later

48

SUFFERING

revealed, his wife felt subordinate to their son and jealous of him, a reversal of what is often seen. The finances of the family were not a real issue because he was on 75 percent disability, which amounted to a tax-free income of about $35,000. In 1978, when the patient came to me, he had been married for about 12 years and had survived the same period of time with Hodgkins disease. He felt that his marriage was in trouble. He stated that his wife was no longer very affectionate to him and was with­ drawing from him. He no longer felt the emotional support he needed from her to help him fight his disease. In his sessions with me, he obsessively focused on his disease and on his overwhelming feeling that unless he involved himself in deicision-making about his disease, it would overcome him. Toward this end, he read widely on the latest ideas about Hodgkins disease and often asked my medical opinion about his problems. It became obvious that he never ceased to discuss his disease at home and with anyone who would listen. Wife and friends were ail prey to his litany and jeremiads. One of the early interventions was to make him aware o f the effects of his behavior and to interpret it. While he was in therapy with me, his disease progressed. He died of pulmonary disease and infection. CASE 2 S was a 60-year-old woman who 3 years earlier had undergone a mastectomy for carcinoma. Her reason for seeing me in consulta­ tion had to do with fears about her “ ego strengths” and her diffi­ culty in facing her next course o f megadose chemotherapy. She felt depressed and immobilized by apprehension over her chemotherapy course which she underwent for a week at a time at 8-week intervals at a medical center in a nearby town. She appeared a good deal younger than her age, was well dressed and finely coiffed. She also had all the markings of an hysterical personality. She had retired from her job as a school guidance counselor because of the many complications brought on by her repeated courses o f chemotherapy. She had been married briefly about 20 years prior to her illness. She had had no close or lasting male relationships since then, and her de­ scriptions of even transient relationships had a fantasy-like quality. Our sessions were characterized by her ruminations over her last or next course of chemotherapy, technical discussions about medi­ cations, her known areas of métastases, and commentaries about her

Robert Lynn

49

doctors, past and present. She had been to several psychiatrists over the past 30 years and had little good to say about any of them. At the time she came to sec me, she had a team of oncologists in Philadelphia and a local oncologist in Manhattan. She had recently consulted an oncologist in Boston and had asked me to refer her to a breast cancer specialist at Memorial Cancer Center. When she had a liver and bone scan in Philadelphia, she insisted on having them read by other radiologists. She usually tried to focus the sessions around some current somatic Fixation, trying to enlist my knowledge of oncology rather than to focus on her underlying feelings and reac­ tions. Any discussion or interpretation of the maladaptive nature of her coping was pushed aside or minimized by comments to the ef­ fect that she had “ already thought of it.” Around the time of her most recent liver scan she had been hope­ ful that her chemotherapy would end, and had been told to expect a specific number of courses. She felt she would be able to get on with her life, perhaps by returning to part-time work and developing more of a private life. However, the liver scan showed worsening of lesions previously under scrutiny. Her reactions to this and to the expectation of further chemotherapy indicated the impending fall of the Sword of Damocles and signified the recurrfence of an existential plight, The patient’s coping strategies continued in an exaggerated fashion with hypervigilance and intellectualization, another attempt at mastery. Attempts to redirect her attention to underlying issues failed. She would discuss the fact that she was attracted to men but felt handicapped by the surgical mutilation of her body: “ What man would want a woman with no breasts?” She had been through 17 years of single life after her divorce and prior to her breast cancer. Whenever attempts were made to direct her to this long period of isolated social functioning and to interpret it in light of her current wishes to become socially and sexually active, she would focus in­ stead on feelings about her body image or about having to return to the hospital for her next course of chemotherapy. During one period, she showed the vegetative signs of depression along with a more ruminative quality in her somatic complaints. She was begun on a course of tricyclic antidepressants. She was totally noncompliant with the medication and only reluctantly admitted to having stopped it prior to returning to the hospital for her next course of chemotherapy. She subsequently stopped therapy with me, complaining about the finances even though the fee charged her was considerably lower than clinic fees.

so

SUFFERING

Lipowski (1970) clearly described a cognitive coping style that he called ‘‘vigilant focusing” : characteristically seen in obsessional, alert, anxiety-prone and inteliectualizing individuals. For them perceptual clarity and ability to explain both internal and external information im­ prints are necessary conditions for security. When ill, such in­ dividuals must know what is happening to them, what the im­ plications of their illness are, why certain diagnostic or therapeutic procedures are used, and so forth. Such patients seek all relevant information and try consistently to make sense out of their experience. This style too is viewed as a con­ tinuum, ranging from hypervigilance and exaggeration of all threats to bodily integrity at one end, to realistic recognition of threats and tasks and related rational planning at the other end. Between these endpoints one may place obsessional collecting, arranging and re-arranging of all bits o f illness-related infor­ mation, anxious ruminations about illness . . . Under coping strategies that arc more protean than styled, he ascribed certain meanings to illness that are particularly pertinent to the two cases discussed here. These are (1) Illness as a challenge. (2) Illness as a punishment. (3) Illness as a relief from the responsi­ bilities that would be imposed by normal health, personal crises, or economic difficulties. (4) Illness as a strategy means of controlling others by gaining their attention and support. Both patients presented here exhibited similar coping mechan­ isms. These were called into play not just once, but again and again with each recurrence and with each course of treatment. The first patient had to cope with staging procedures, courses of radiation, and then chemotherapy between 1967 and 1980, at which time he was a ‘‘respiratory cripple” as a result o f the repeated radia­ tion to his lungs, pulmonary infections caused by opportunistic or­ ganisms, and pulmonary fibrosis caused by Adriamycin. His therapy sessions were characterized by lengthy discussions o f his condition. By then, he had survived 12 to 13 years with malignancy and felt that it would best him unless he constantly focused on his disease and treatments. To maintain this focus, he felt that he needed his wife’s caring and devotion which he felt was waning. What he thought was appropriate adaptive coping, using intellcciualizalion and vigilant focusing in an attempt to gain control, was really mal-

Robert Lynn

51

adaptive. This behavior had, in essence, “ burned out” his wife who was tired of hearing him speak about his disease to anyone who would listen, like the Ancient Mariner about his albatross. His wife withdrew further probably in an effort to preserve her own homeostasis and, in the last few years, possibly as a consequence of what has been called anticipatory grief. In therapy, the patient final­ ly began to see that his efforts to gain mastery over his disease were distancing the one person whose support he needed and valued to help him survive. The second patient presented similar features. She, too, used intellectualization and vigilant focusing. However, since she had had some training in psychology and guidance as well as many years of psychotherapy, she also mixed in jargon about ego strengths, Oedipal conflicts, and phobias to isolate her feelings and add to her intellectuaiization. She had accrued a sizable library of specialized literature on breast cancer. She idolized and idealized her out-oftown oncologist. With this fierce transference came an ambivalence that permitted her to travel all over the metropolitan area with her scans, x-rays, and laboratory reports. She became obsessed about each course of chemotherapy, questioning whether or not to contin­ ue. The disease and her repeated courses o f treatment became her primary focus and her rationalization for why her life was so barren, why she had so few friends, and why she had no male relationships. There was a modicum of reality in this. However, she refused to ex­ amine why her life had not been very different for the prior 17 years. Senescu (1963), in discussing the occurrence of severe emotional complications in patients with cancer and other serious illnesses, stated that emotional complications occur “ when the emotional re­ sponses of the patient interfere with everyday functions such as work or relationships with family or friends, or causes the individu­ al to curtail or even to give up entirely his usual sources of pleasure. ” The second patient used her disease as a relief and as a strategy to control. In doing so, she distanced her family and friends in much the same way that the first patient wore out his support systems. With her doctor-shopping, she also provoked frustration and nega­ tive countertransferential feelings in her primary therapists. I have presented the concept that repetitive threats to patients’ very existence which essentially constitute a repetitive existential plight have been created by advances in medical science. Each chal­ lenge, whether it is a recurrence o f disease or repeated courses of

52

SU FF ER IN G

therapy, calls into play coping strategies and styles that arc not always adaptive. When maladaptive coping leads to emotional com­ plications, as it did for the two patients discussed, it is to be hoped that the dynamics can be worked with in psychotherapy early enough to prevent irreversible situations and alleviate the emotional suffering concomitant with physical illness.

REFERENCES Lâcher, M. and J. D urant. 1965. "C om bined V inblastine and Chloram bucil Therapy o f H odgkin's D isease." Annals o f Internal M ecicine 62:468. Lipowski, Z . J. 1970. "P hysical Illness, the Individual and the Coping P ro cesses." Psychi­ atry in M edicine 1:91-102. Schm&le, A .H . 1976: "Psychological Reactions to R ecurrences, M étastasés o f Disseminated C a n c e r." International Journal o f Radiation Oncology. Biology, Physics 1:515-20. Senescu, R. 1963. "T h e D evelopment o f Em otional Com plications in the Patient with C a n c e r." Journal o f Chronic Diseases 16:813-32. W eism an, A. and J.W . W orden. 1976. "T h e Existential Plight in C ancer: Significance o f the F irst 100 D a y s ." International Journal o f Psychiatry in M edicine 7:1-15.

Suffering in Chronic Mental Illness Francine Cournos

It is much more difficult to understand the pain of mental illness than that of physical illness. We ail have a reference for physical pain: we have all suffered, to one degree or another, some sort of physical anguish. We all know that someday we too will face death. Our own experience allows us to empathize with physically ill and dying patients. However, when faced with the pain of schizophre­ nia, the most serious of chronic mental illnesses, we not only lack a frame of reference, but actively try to distance ourselves from its victims. A person suffering a heart attack in the street gathers a crowd of solicitous passersby. An unkempt person shouting incoherently—as clearly in pain as the heart attack victim—receives, at best, an un­ comfortable glance. There are some obvious reasons for this: the situation is clearly not an emergency, and people are, in any case, aware of the limited possibilities for helping a person like this. However, aside from the purely practical problems, we feel reluc­ tant to make contact of any kind with such a person. We are accus­ tomed to operating within a certain range of expected behaviors and emotional responses, and when people violate those expectations, we protect ourselves by avoiding them. We don’t know what to ex­ pect from psychotic people, and we don’t know what will be demanded of us. We assume that their inner lives are different from our own. They may ignore the things that elicit emotional responses in healthy people, and respond to things that are, to us, invisible. We are not sure, then, where there is common ground. Thus, think­ ing about the pain of mental illness is difficult. Even groups that are dedicated to looking at the experience of suffering will invite psychi­ atrists to talk about the suffering of physical illness and see them ig­ nore their own specialty, the treatment of the mentally ill. Francine Cournos, M .D ., Assistant Clinical Professor o f Psychiatry, Department of Psy­ chiatry, College o f Physicians and Surgeons, Columbia University, New York, New York (722 West 168th Street, NY, NY 10032).

54

SUFFERING

If we are going to understand the suffering of the mentally ill, we have to examine how a patient’s mind tries to understand its own disordered state. This is illustrated by the markedly different reac­ tions of two schizophrenic patients to their disease. John was a 25-year-old man who suffered recurrent psychotic episodes. At the height of his illness, John thought he had extraor­ dinary physical and mental powers, believing, among other things, that he could single-handedly fight crime in the streets. Late at night, unable to sleep, he would go looking for trouble in some of the city’s worst neighborhoods. Often, the result of these forays was his arrival at the hospital, escorted by the police, who did not always succeed in rescuing him before he was injured. Believing he was chosen for a special mission, he felt it unnecessary to have a job, get along with his family, or attend to the mundane tasks of daily life. John found psychosis pleasurable and stimulating. His life in a nonpsychotic state contained nothing to compare with his exciting delu­ sions, and one of the salient features o f his illness was that it pre­ vented him from understanding its dangers. All this is not to say that he became psychotic in order to become a superman—we believe that psychosis is related to a biological vulnerability—but that hav­ ing become psychotic, John could ignore the normal responsibilities of everyday life. Linda was also psychotic, but her subjective experience of her sit­ uation was entirely different. At the age of 16 she was diagnosed as schizophrenic, and in spite of multiple hospitalizations and the best treatment, she remained gravely ill. She described her mind as a computer that could not organize its data, a memory bank over­ loaded with fragmented information. She believed her body was constantly changing, parts of it dying and being reborn. Her feelings for other people could change from intense love to intense hatred in a matter of moments. But in spite o f her psychosis, she maintained an unusual degree of objectivity about what was happening to her. She was able to compare herself to healthy people and to see where she fell short. She realized that she was incapable of sustaining a satisfying love relationship, and was painfully aware of her inability to do any productive work. She clearly understood not only the pain of her illness, but also the limitations it imposed on her life. John enjoyed his psychotic experience; Linda suffered great sub­ jective pain. John’s judgment was severely impaired by his disease; Linda’s remained lucid. We can perhaps empathize more easily with Linda, with whom we share a realistic assessment of her situation.

I'rancine Coumos

55

In any case, the range o f responses to mental illness extends from extreme suffering to almost total indifference. W hat about the families o f mentally ill patients? What is it like to love and care for someone who is schizophrenic? How do families deal with their own sadness and guilt in a world that considers men­ tal illness shameful and suspects that the family may be at fault? Consider the despair o f one mother who recently wrote a book (Walsh, 1985) about the experience o f having a schizophrenic son. H er description o f one o f the symptoms o f schizophrenia gives a brief glimpse o f the fam ily’s suffering: It is one o f the saddest hallmarks o f schizophrenia: the loss o f pleasure. Anhedonia is the official word for it, a bland term for a devastating happening. Scientists think the brain’s neural reward mechanisms may be damaged. Whatever the biology, severe anhedonia may affect some chronic schizophrenics. What it means to their lives and the lives o f their families is profound. It means that joy, affection, desire, pride, humor, are all drained away. What makes life worth living disappears slowly, relentlessly, until nothing seems to be left o f the schizophrenic but a shell, a staring robot. The suffering o f these families is often borne in isolation. For parents with a schizophrenic child, any semblance o f normal family life may come to an end. The entire household revolves around the mentally ill person. Families are embarrassed to have in their homes even those friends who haven’t already abandoned them. Well chil­ dren may feel neglected because o f the overwhelming demands of their ill sibling. For such families, the fear that patients may harm themselves or others is constantly present. Even mental health pro­ fessionals have often been enemies, elaborating theories that hold the families responsible. It is readily apparent that the families of the mentally ill have had few places to turn for support and advice. Schizophrenia is a common illness, affecting 1 percent o f the pop­ ulation and accounting for the use o f more hospital beds than any other disease. In spite o f the great suffering o f patients and their families, the mentally ill remain the most neglected population of seriously ill patients. Extremely incapacitating mental illnesses often occur in young adulthood, bringing their victims the prospect o f a long life devoid o f the normal pleasures and satisfactions o f living. If we can allow ourselves to overcome the inhibition that keeps us

56

SU FFERIN G

from thinking about the suffering imposed by mental illnesses, we might be more willing to devote the necessary resources and en­ thusiasm to conquering them.

REFERENCE W alsh, M . 1985. Schizophrenia: Straight Talk f o r Families and Friends. New York: W illiam M orrow & Com pany.

Reflections on Suffering Prompted by ALS Claire F. Leach John Kelemen

Amyotrophic lateral sclerosis (ALS) is unique in the combination o f possibilities it extends for suffering. It is the classic nightmare in which you want to run and your legs w on’t move, to speak and you can make no sound. Although with good medical management pati­ ents are almost free o f physical pain, ALS reactivates earliest fears and angers. Its assaults on the psychological defenses are much like those o f advanced aging: powers diminish, dependence increases, life style changes, some friends and relatives withdraw, and death comes near. The emotional tasks o f aging need to be done prem a­ turely, out o f context; they are compressed, exaggerated. No other disease presents patients with a view o f themselves as dying by increments, assailed by repeated, visible losses o f function and by the progressive inability to make themselves understood. Death is the certain conclusion within a relatively short time, usually two to four years from diagnosis. A final irony is imposed by mod­ ern medical technology in the form o f a respirator which, in theory, can sustain ALS patients indefinitely. W hen normal breathing fails even if many rewarding functions remain, patients must decide be­ tween imminent death and indefinitely prolonged dependence on a respirator while ALS proceeds to an even more bitter conclusion than its natural course. Patients have no interim opportunity, short o f uncertain court action, to say “ Enough.” It seems, in most cases, that the saving grace o f ALS is that it is terminal and that the merci­ ful release of the patient is defeated by making continuation o f life a matter o f choice. Claire F. Leach, M .S.S., Senior Medical Social W orker, Nassau County Medical Cen­ ter, East Meadow, New York (50 Tinsel Court, Wantagh, NY 11793). John Kelemen, M .D ., Chief, Neuromuscular Division, Department o f Neurology; Di­ rector, MDA Clinic, Nassau County Medical Center, East Meadow, NY 11554.

57

58

SUFFERING

T H E D IS E A S E The pathogenesis o f ALS is the selective degeneration and death, for unknown reasons, o f the upper and lower motor neurons in the brain and spinal cord. Deprived o f their nerve supply, voluntary muscles wither and finally atrophy in various sequences. Therefore, between the onset o f ALS and the patient’s death, a wide variety o f experiences is possible: virtual immobility may occur while breathing and speech are still intact, or there may be loss o f speech or breathing ability while most other motor functions are still nearly normal. Mysteriously, the eye muscles are spared, as are the bowel and bladder sphincters, a fact that is reassuring to patients who fear the indignity o f incontinence. (There is some indication that these too may finally fail if life is prolonged mechanically; our experience with this is still limited to only a few years.) The sensorium and in­ voluntary muscles—including, significantly, the heart—are unaf­ fected. Intellectual function is also unimpaired, leaving patients aware o f and unsheltered from all the implications o f their disease, but also leaving them capable, at the deepest level, o f remaining themselves, o f maintaining control o f their change and growth in response to this challenge. ALS affects twice as many men as women, primarily those in their middle years; the disease rarely oc­ curs in very young or very old people. In the natural course o f the disease, death occurs as a result o f respiratory failure when thoracic and upper airway muscles fail. Because o f the acceptability o f gas­ trostomy and allied aids, starvation is now rare, although the swal­ lowing muscles fail. Even with promising research underway, cause and cure still elude us.

A SP E C T S O F SU FFERIN G To understand the suffering caused by ALS, we have had to con­ sider what suffering is, self-evident as it seems. The dictionary says that to suffer is to endure pain, but this is not altogether true. We have all known o f people experiencing pain with a kind o f joy in their purpose—some mothers while giving birth, injured athletes in competition. Similarly, emotions that are often considered painful and that cause suffering for one person may not do so for another: ambivalence, frustration, sorrow, anger, guilt, and fear. Mountain climbers report a kind o f healthy, almost exhilarating fear. None o f

Claire /•'. Leach and Jolm Kelemen

59

these are peaceful emotions. Thus, neither loss of peace of mind alone or physical pain alone can bring about the emotional response to either physical or mental pain that we call suffering. Something additional must be present—something individual and very person­ al, and that sometimes depends on the context in which it occurs. We suggest that suffering has certain distinguishing aspects. It rests first on awareness, on a conscious, intense identification with pain of some sort, whether emotional, physical, or spiritual—a sharp sense that this is happening and that it hurts. Second, suffering has a feel of unmanageability, a sense that the powers and structures one customarily uses to oppose affliction are lost or irrelevant. There is the threat that this pain is or will surely go out of control, become unbearable, and overwhelm the sufferer. Third, and per­ haps dominant, there is some element in suffering whereby the pain does violence to our expectations: it is unfair, makes no sense, has no meaning, serves no purpose. It is breaking the rules of either our emotional assumptions or our value system—“ It is not okay with m e.” It may be this unacceptability of the pain along with the loss of control, purpose, or meaning, that distinguishes suffering from simply enduring pain. The basic expectation that may be violated views adversity, con­ sciously or unconsciously, as an aberration in the human condition or in the way one’s life should or must go if it is to be coped with on a daily basis. People who have assumed their exemption from pain are now drained by taking on, in addition to the pain, their outrage at the unfairness of being attacked, disrupted, singled out; by their diminished self-esteem and guilt at not having measured up, at not having somehow managed better or been more deserving; by their anger that significant other people (parents, spouse, professionals) cannot help them or that a supreme being has not arranged things more humanely. Those fortunate people who view adversity as a normal part of living limit the influence of adversity by not making it a consuming adversary. They incorporate it into their lives as something to deal with, and then get on wth living with purposes that have greater meaning for them—their jobs, families, faiths, person­ al relationships, even their own manner of meeting adversity. Peo­ ple who have a robust sense of personal integrity and of the significance of their lives are probably best able to absorb affliction in this way; their acceptance frees their energy and fuels an underly­ ing peace of mind. A final aspect of suffering that religion has long addressed is its

60

SUFFERING

positive usefulness and redemptive spiritual meaning. Martyrs have chosen and, to that degree, have controlled their affliction, finding in it a high sense of purpose. We need to recognize this tradition when we see it enabling patients to regard their own trials with equanimity and even a kind of nobility. We are challenged to help other patients look for uses in their unchosen adversity.

SOURCES OF SUFFERING IN A L S Appreciating how subjective suffering is, we hesitate to set up criteria to judge which ALS patients are suffering and how deeply. Experience and theory support us, however, in the belief that suffer­ ing causes dislocation in function and relationships, and that observ­ able behavior can usually be related to the patient’s degree of inner calm or debilitating pain. Using these observations, we find four principal external sources of suffering for ALS patients: the diagnostic process, the diagnosis itself, successive key points of loss, and imminent death. If this is an unrelieved painting of black on black, recall that the subject is “ suf­ fering.” What we have learned of amelioration is for consideration another time. I. The diagnostic process usually begins some time after the pa­ tient has first noticed some annoying but still unsettling awkward­ ness of gait, or speech, or a slight loss of dexterity. Because the di­ agnosis is a process of exclusion, tests and watchfulness, time elapses with a worsening of symptoms, tentative diagnoses or lack of answers, and—as a patient sees it—with nothing being done. Fear at this point is fear of the unknown, of something menacing and in­ accessible to treatment. Frustration and anger rise because of the uncertainty, and because of the medical profession’s apparent and unexpected fallibility. Much of the diagnostic process involves a succession of doctors who are new to the patient, specialists and others who are sought to give additional opinions, so that the thera­ peutic relationship that should develop later and provide support for the patient is usually missing. One horror story comes to mind of a man in his middle years, ap­ parently in robust health, whose speech was becoming more slurred each week. At a friend’s suggestion, he consulted a neurologist, who said that nothing was wrong. After a wait, he went to a general practitioner who steered him back to the same neurologist, who

Claire F. Leach and John Kelemen

61

again gave him a clean bill o f health. In some desperation, he went to a second neurologist, who diagnosed his condition as myasthenia gravis. When the patient expressed despair over the diagnosis, this doctor, attempting to comfort him, told him to be glad he didn’t have ALS. Thoroughly frightened, the patient decided to seek help at prestigious specialized clinics and made appointments at three separate ones. At the first clinic, he was advised against keeping his appointment at the second clinic because o f a recent disappointment with its performance. Doctors at the second clinic confirmed that he had a motor neuron disease, and “ gave” him six to 18 months to live, but said that anyone who could tell him it was ALS was a magi­ cian. He reached the third clinic psychologically battered and in a clear state o f clinical depression. II. The diagnosis, no matter how sensitively conveyed, is perhaps the most critical o f any o f the sources o f suffering, often setting the tone for meeting the repetitive stresses still to come and rapidly arousing some o f the patient’s most profound fears. Each o f ALS’s real and devastating assaults—primarily on independence, selfworth, self-image, and survival—has a parallel earlier in the life o f each patient, intensifying the current threat to the degree that the earlier one was unresolved. Death is no longer a sometime thing. It will come, predictably, echoing early childhood fear o f separation and abandonment and overlaid with realistic anxiety about who will assume the patient’s responsibilities. Loss o f function will come and keep coming, bringing with it realistic anxiety over expenses and over inability to fulfill present obligations, bringing fear and guilt at becoming a burden, and bringing apprehension about whether de­ pendable and supportive care will be available for as long as it is needed. Patients’ most fundamental sense o f the w orld’s trust­ worthiness is challenged along with all they have learned during each successive stage o f life: that self-reliance and mastery and pro­ ductivity are essential to their own self-worth and the good opinion o f others. Realistically, their options will close down, and they may grieve over lost goals and dream s. If they foresee disability that will be visible to the rest o f the world, their self-image suffers. To be different, conspicuous, or awkward arouses varying degrees o f em ­ barrassment and humilation, this time depending on how deeply their identity is attached to their physical appearance and capacity. As speech becomes impaired, anticipation o f the inability to com­ municate arouses profound fear o f isolation and loss o f relation­ ships. This fear, which echoes the infant’s need for contact in order

62

SUFFERING

to survive, is reinforced continually as we seek to meet our emotion­ al and physical needs through our connection to others. Patients may anticipate that they will become less useful, less likeable, perhaps even repellent. Our society has taught us well that the norm is health, attractiveness, strength, accomplishment. It is small wonder that after their diagnosis has been made and a few weeks of seeking fuller information about ALS, patients truly suffer. This onslaught of painful feelings is in no way acceptable or supportable. They feel helpless, hopeless, isolated from help, not in control, and as though their goals and values are no longer appli­ cable. We recall a successful businessman with a devoted family who had led, according to his own estimate, a charmed life. His outrage at the diagnosis of ALS was total, his coping mechanisms nonexistent. His response was severe depression. We think, in con­ trast, of a widow who raised a number o f children almost singlehandedly while coping with an alcoholic husband. When she was stricken with ALS, she took on whatever disabilities she encoun­ tered as they came, continued all o f her customary activities that were still possible, made her own decisions about care, and put aside for the future any problems she could do nothing about at the time. III. With the progression of the disease, patients confront realities that were only forebodings at the time of diagnosis. Practical changes in ability, life style, and relationships require repeated ad­ justments, each outmoded as new changes occur. Emotionally, pa­ tients undergo a recurrent grief process with each successive signifi­ cant loss. Their suffering remains keen until or unless they can reach a degree of acceptance. Physically, patients endure trouble­ some discomforts that are cumulatively wearing at best, and cause angry demands or depression in some patients. Sometimes patients experience acute pain from muscle spasms occurring chiefly as a result of anxiety-induced muscle tension; the spasms attributable to ALS are normally manageable by muscle relaxants. And always there is some hovering image of the final loss, the loss of life. One family member pictures death as a ten ton truck bearing down in high gear while the family member puts up barrier after barrier in the hope of deflecting or delaying it. To another, the image of death is a small brown puff the size, perhaps, of a fist, some distance off; it is there, but of no immediate importance. At times, patients’ most intimate caregivers and friends struggle unsuccessfully with their own responses to ALS and the problems it

Claire F. Leach and John Kelemen

63

inflicts on the patients. When this happens, patients’ acceptance o f each loss becomes more difficult and their suffering more intense. Their embarrassment about their function and appearance is rein­ forced, their loss o f self-worth heightened, their fear o f abandon­ ment and guilt about burdening others increased. Communication is likely to be distorted, increasing patients’ sense o f being alone with a problem no one can handle alone. We think also, however, o f a melancholy, serene craftsman, by now nearly immobile, who watches gardeners from his window and remembers when he enjoyed gardening. He regrets that he can no longer enjoy it, but he accepts his disease, comforts his grieving brother, and is not consumed or incapacitated by his regrets. He at­ tracts help from everyone, enjoys people, is dignified in handling his problems with help, and transcends his incapacity. IV. Death becomes imminent in two forms in ALS, each with its peculiar source o f suffering in addition to the common experience. In the first instance, when the breathing capability is threatened while other muscles and abilities are largely intact, the agonizing de­ cision about use of life-support equipment must be made or imple­ mented. Patients in this situation will die while much capacity for enjoyment and many useful functions remain to them o r—as legal precedent stands—will commit themselves and their families to the indefinite time o f their total dependence on respirators. In the final stages, such patients will be able to take in stimuli but will not be able to initiate any activity or communication. Recently developed computers, which speak and print operated by finger or eye move­ ments alone, may change this dramatically for some patients. The suffering imposed by forcing patients to choose between two such bleak conclusions could be avoided by a change in public policy. If it is ethical for patients to permit or refuse to permit the use of extraordinary life-prolonging measures, is it then ethical to make them relinquish the right o f choice later? If we insist that they cannot withdraw permission once granted, could they give a timelimited permission with the right to make another intentional choice at the end o f that period? Perhaps there could be a contract with the doctor or the hospital? W e feel we owe patients a full, honest, and perhaps even graphic picture o f the consequences of dependence on a respirator as they deliberate. Increasingly, it appears to us that rel­ atively few patients and families have the stamina and values to withstand respirator life, much less find rewards in it. If patients’ decisions on this issue are without conflict, the most

64

SUFFERING

loving and willing family may still find it excruciating to be caught between supporting the patient’s decision to die now or watching the patient change and, as the disease progresses, seeing the allconsuming burden of care stretch ahead into an indefinite future. Families who give unstinting care have told us that they can do so because they know it is “ temporary.” Fear, anger, and guilt would certainly follow if a family took the position that they could not back the patient’s choice of respirator life and that a placement of the pa­ tient (now available only in acute-care hospitals) would be neces­ sary. Is it right to consider such a thing as “ family rights” to partic­ ipate in this long-term, life-changing decision? It seems unthinkable within the context of the patient’s overarching right. We seek answers. A separate source o f outrage and loss of self-determination exists in the possibility that patients who have decided not to use lifesupport systems will nevertheless be subjected to extraordinary measures by personnel to whom their wishes are not known. Often, a family cannot bear to let a patient die at home without medical help, even though they know the patient’s wishes. This final indigni­ ty to the patient could be prevented and the family could have the support of medical personnel in this extreme hour if living wills were currently honored in all jurisdictions. We recently had a pa­ tient who was placed on a respirator in our emergency room during acute breathing failure despite his previously expressed wishes against this. Soon after, in the absence of any apparent cause, he died while on the machine. Did he simply lose his will to live? We have to wonder. The second instance of imminent death as a consequence of ALS occurs when breathing is intact but most other function is gone. In this instance, the suffering for both the patient and the family usually arises from the patient’s inability to achieve death. Patients who have been able to communicate with us at this stage generally want to die quickly. The legitimate feeling of many families that they want to let their loved one find release is sometimes complicated by guilt, followed by denial and unwillingness, as they become aware that a part of their consideration is—as seems almost inevitable—for their own interests and relief. Total immobility has been called a living death; there is no ac­ ceptable way to make real death available, although we have known patients and families to plead in anguish. We have heard repeatedly that, by this time, death is a friend.

Claire h'. I.each and John Kelemen

65

KINDS OF SUFFERING We can discover two sorts of suffering at extreme ends of a con­ tinuum. We may call the first simple suffering, which occurs when the sole source of pain is the immediate external assault of ALS. Simple suffering is almost never found in its pure form. The second we may call complex suffering, in which the source of pain is the immediate assault burdened by pre-existing pathologies of personal­ ity, relationships, or social situations that might or might not have been crippling without ALS. The added weight o f this form of suf­ fering can, at times, be profoundly destructive. Between the two ex­ tremes, we find all gradations and combinations. Simple suffering is characterized by maximum achievement and enjoyment of life without a context of realistic appraisal of present limits, relative physical comfort, clear decisions about the use of medical resources, relationships in which the patient both gives and receives and readily shares feelings with at least one other person. Some patients and families even discover unexpected recompense in their adversity, most often in restored or deepened personal rela­ tionships, growth in personal stature, or in spiritual satisfaction. Simple suffering appears to be predicated on abundant psychic energy that is little depleted by internal conflicts; strong, mutually supportive relationships; prior successful experience in coming to terms with adversity, pain, and mortality; a reasonably comfortable financial position; and often, a strong central spiritual life. People suffering in this way are capable of a broad range of freely chosen attitudes and behaviors when confronted with a new challenge. In ALS, this is influenced by the context of the individual’s life. Simple suffering, understandably, is more frequent in patients who find ftilfillment in intellectual pursuits, which they can continue to enjoy, rather than through physical attainment, which is now progressively curtailed. Older patients who feel they have completed their life business are less compromised than younger ones with full agendas ahead. The psychological work of aging has somewhat prepared older patients for the elements of ALS that mimic the circumstances of advanced aging in an unnatural and compressed form. Complex suffering, in contrast, involves confusion: premature withdrawal from activity either for pleasure or accomplishment; ex­ acerbation of physical symptoms; damaged relationships, often with alienation of people who could meet the patient’s needs; either ag­ gressive demands for attention or a pervasive passivity; exclusive

66

SUFFERING

self-concern; unrealistic insistence on independence; lack of partici­ pation in medical care; blockage and misdirection of emotions from their primary objects. Complex suffering appears to afflict people whose ego strength is severely limited. Their psychic energy has been depleted earlier in life. Their self-worth is dependent on other people’s view of how they look, what they can do, how pleasing they are—they would perhaps cease to exist, in their own minds, if it weren’t for reflections from the outside. They are unused to taking emotional responsibility for decisions and consequences in their own lives. Their relationships are distant, strongly dependent or domineering, conflicted, or franidy psychopathological. Their abili­ ty to control their lives has been limited to their need to do so or is extreme, or perhaps both. Their functioning has been maintained because they have had enough mobility, emotional or physical, and enough supports, however uncertain, to accommodate their prob­ lems. They have never successfully met deprivation, pain, or death nor have they had a model to show them the way. Their repertoire of possible attitudes and behavior in the presence of new circum­ stances is highly constricted by narrow, closed patterns o f thought; change is typically perceived as threat. Their diverse experiences demonstrate, in exaggerated form, the kinds of problems experienced by patients at intermediate points along the spectrum. And this, of course, is where most patients, like many of us, are positioned between vigorous emotional resilience and brittle susceptibility to outside forces. For whatever develop­ mental reasons, we all reach adulthood with a certain amount of psychic energy, having invested a certain amount of that energy in earlier unresolved problems and having somewhat more tied up in family and cultural assumptions that limit our emotional adaptabili­ ty. We have learned ways to meet our own needs adequately in good times and in some bad times, yet bear scars and vulnerabilities from pain we have endured at a high price. We are, more or less, depen­ dent on our looks, our achievements, and other people’s judgments for our sense of well-being. We have, more or less, trusting rela­ tionships, varying abilities to confront crises with the confidence that we can somehow come through them whole, certain areas of conflict in our families, friendships, and work that must be skirted. We regard death, if at all, as a dreaded enemy, as no part of our reality, or as the alternative that heightens the value of each day. Thus, one’s capacity to cope even with a condition as devastating as ALS varies from time to time, depending on the balance among fac­

Claire F. Leach and John Kelemen

67

tors that increase or decrease psychic energy. These factors include physical ability, family relationships, the emotional environment, and other support systems. Together, they constitute the variables that are amenable to intervention. A less approachable situation ex­ ists when the disease develops in some individuals in ways that rob life o f meaning for them specifically and that sap their energy ; o r­ dinarily well-functioning personalities can be at least temporarily derailed. Two cases o f particularly ironic loss o f function come to mind. For a woman whose chief enjoyment had been telephone con­ versations with friends, speech was the first function lost and, for a long period, her only one. In the other instance, a taciturn man whose principal enjoyment was boating became wheelchair-bound while his speech remained completely unimpaired. There has been little systematic examination o f criteria that might predict who will weather chronic fatal illness and who will be devas­ tated by suffering. No one gets through ALS without suffering. However, we suggest that those who come through it whole are those whose experience is closest to what we call simple suffering. With these patients, we can intervene to improve the balance o f fac­ tors that affect their energy and to help them move in a positive direction along the spectrum. It becomes the goal o f health profes­ sionals to identify and help remove as many sources o f physical and mental pain as possible, and to ameliorate the inevitable residual suffering. Patients must be encouraged and assisted in their search for the control, purpose, and meaning that preserve the value of their lives in the presence o f such a disease.

T h is p a g e intentionally left blank

Suffering and End Stage Renal Disease Kenneth Trachy

As director of education for the University of Miami School of Medicine transplant program, my responsibilities include educating doctors, nurses, allied health professionals, and the lay community about organ transplantation and cadaveric organ donation. In addi­ tion, I regularly counsel persons who have end stage renal disease about their probable experience with transplantation and rehabilita­ tion. Thus, hundreds of patients have shared with me their experi­ ence of physiological debilitation and psychological distress as a result of chronic disease and dialysis. Personal experience has es­ sentially defined my relationship with these patients. I, too, suffered years of chronic disease and, in 1972, underwent a kidney transplant. Cassell (1982), in his paper “ The Nature of Suffering and the Goals of Medicine,” addressed the question of suffering and its re­ lationship to organic illness, expounding a distinction between suf­ fering and physical discomfort. He described suffering as a psycho­ logical state in which distress threatens the intactness of the person. Through my own interactions and communications with renal pa­ tients and their families I have come to agree with Cassell’s defini­ tion, and to support his concern for awareness and treatment of the psychological trauma that contributes to suffering. Thousands of Americans are afflicted with chronic renal disease and irreversible end stage kidney failure, resulting in the need for major medical intervention, without which they would die. End stage renal disease is defined as the inability of a person’s kidneys to function sufficiently to sustain life, so that dialysis and transplanta­ tion are required to prolong the person’s life. In general, end stage is reached when 10 to 15 percent of kidney function remains. These persons comprise a diverse population with respect to their ages, racial and ethnic identities, and the etiology of their disease. What Kenneth Trachy, Director o f Education, Division o f Transplantation, Department o f Sur­ gery, University o f M iami School o f M edicine, M iam i, FL 33101.

70

SUFFERING

they have in common is an irrevocable and debilitating disease that is classically symptomatic. Initially, patients manifest various physi­ cal problems, lethargy, and weakness; a physician then diagnoses a particular kind o f kidney disease, from which follows a chronic and indefinite process. Patients typically experience years o f diminishing kidney function accompanied by manifold symptoms, complications, and discom­ forts. As kidney function decreases and end stage approaches, bodi­ ly impurities are not adequately filtered and removed from the blood. Therefore, renal patients become increasingly anemic, listless, and tired. Uremia causes the skin to itch and there is ner­ vousness o f the limbs. Edema in the tissues and organs is common. Associated complications include nausea, headaches, soreness, and hypertension. For every person victimized by chronic kidney disease, the prog­ nosis is absolute: end stage organ failure. The progression o f physi­ cal deterioration, however, is individual and problematic. One per­ son will go from diagnosis to dialysis in ten months, another from onset to end stage in three years. Patients share physical responses and stresses, although the duration and severity o f the disease differs for each individual. Dialysis with an artificial kidney machine pro­ vides the patient with a filtration mechanism to relieve the symptoms o f critical kidney deterioration. Maintenance dialysis, however, is inherently a degenerative process, given the inability o f available technology to replace all kidney functions. Persons are maintained by dialysis therapy for a length o f time that is a function o f their health and stamina throughout treatment, the desirability o f kidney transplantation, and organ donor availabil­ ity. Individual experience and tolerance o f dialysis is unique and separate, although the regimen is often fraught with complications that include chronic anemia, infection, fluid imbalance, high blood pressure, nausea, impotence, bone deterioration, hepatitis and, critically, vascular deterioration. This is only a synopsis o f the gen­ eral physical deterioration that occurs among those who have chronic renal disease and who undergo maintenance dialysis. However, it is suffering in the sense o f psychological stress that is o f primary interest here, and as I will illustrate with particular ex­ amples, that suffering and the way patients cope with it are highly individual and vary in effectiveness. Nancy, a 3 1-year-old woman diagnosed as having chronic glomerulonephritis in 1975, typifies a course o f renal disease and

Kenneth Trachy

71

deterioration. The decrease in her kidney function had been gradual and subtle, but punctuated with complications and serious physical episodes. A kidney biopsy revealed the onset o f an irreversible disease process, but for years she was essentially asymptomatic and made only quarterly clinic visits. Nancy states, “ I didn’t seem sick—there was no daily reminder o f a problem .” In 1978, when a friend suggested she had a disease that could ultimately affect her life’s goals, Nancy responded, “ I don’t want to think about it. I ’m norm al.” In 1983, a repeat biopsy indicated that her kidney function was reduced to 30 percent and her doctor observed, ‘‘You now have to plan your life around this disease.” At about the same time, she began hemorrhaging, a complication that precipitated a five-week ‘‘nightmarish ordeal” o f bleeding, pain, and clotting. Nancy sees that as a time o f revelation: “ The disease I had denied for seven years erupted; a three-day procedure was, instead, a horrible ordeal. Finally, I recovered physically and gained strength. But this time I knew I w asn’t healthy. Now my kidney function was down to 22 percent.” The crisis was relieved and another year o f relatively healthy liv­ ing followed. In 1984, weight gain, renewed bleeding, and her need for a dilation and curettage reawakened Nancy’s frustration and fear. She characterizes this as the “ most horrendous time o f my life” and refers to herself as “ becoming a crazy w om an.” In the later months o f 1984, as her disease process approached end stage, it stabilized once more. Nancy continues to maintain a relatively normal life. Fluid retention and diet restrictions are bal­ anced. Her working schedule is moderately regular and she plays tennis, although fatigue and lethargy occasionally intrude. A sister will donate a kidney for a transplant that is, at most, months away. During the last 12 months, Nancy’s life style and daily coping have reflected a response to progressive disease, bodily changes, and trauma. With respect to her work in an administrative position, Nancy has had to accept a short-term task orientation: “ No on­ going, long-term projects.” She believes that the members o f her staff, although they are supportive, have concluded that there is a different expectation about her day-to-day capabilities, and that her leadership and decision-making role has therefore been diminished. This is disheartening, since her mental capabilities are not affected. Still, she does admit to days o f depression and agitation, when she is subject to some distraction and, probably, a degree o f ineffective­ ness. Even though her experiences have not been dramatic when

72

SUFFERING

compared to those of some others, surely there is a compromise, a lack of self-determination, a diminution of performance that Nancy is required to tolerate and cope with. As important as her work is to her life, defining her self-esteem, achievement, and competence, she does bear considerable anxiety—and yes, suffering. Nancy’s relationships with men have also been affected by her protracted disease. Her emotional response is dichotomous: she continues to feel physically desirable most of the time, but doesn’t feel adequate as a potential partner in a relationship. Dating has been erratic. As a result of the bleeding and fluid retention associated with times o f physical crisis, her self-characterization is negative: “ I am different, I’m not normal. I couldn’t be much fun. ” Now, as end stage approaches without episodes of crisis, she dates two men and has “ wonderful good times.’’ It is apparent that this life style is a temporizing measure, a way to survive until she receives her transplant and recovers. When we talk about these good moments in the larger context of a serious relationship o f commit­ ment, Nancy balks. “ Oh no, I ’m not intent on a serious relation­ ship. I wouldn’t want to get involved with someone while I ’m facing surgery and God knows what. That is pain and suffering.” This woman situates herself dependently in relationship to her family and friends in order to feel secure and enjoy them, to com­ municate and bond with them. Whatever she verbalizes about herself, and whether or not her daily distress is described as suffer­ ing, Nancy is emotionally troubled and often scared. Through emo­ tional intimacy with her loved ones, she expresses anguish and fear. Of these relationships she says, They are wonderfully supportive. My friends are my friends. They know I do strange things with my food. They are always there. When I have a problem, I shout it from the rooftop. I want everyone to know. I’m taking everybody I know through this with me. My family, they all get involved, whether emo­ tionally or through doing something for me. I know some of them are just as scared as I am. Coping with suffering is a function of the belief that health and a normal life style can ultimately be reclaimed without the need to re­ formulate one’s life goals because of disease and incapabilities. Nancy discusses her dilemma:

Kenneth Trachy

73

Future to me is—I don’t know. My life is so iffy right now. I get torn between living my life with normal planning and just waiting for it all to happen. I can’t get up and move to Califor­ nia, but I probably would if I w asn’t sick. Probably the hardest part is not knowing when it will happen. It doesn’t just affect me, but everybody around me. So when you ask me what I think about future plans, I say “ Dear God, please just get me through this.” Future plans—I can’t think further ahead than the transplant. In the same conversation, Nancy conceptualizes the long-term re­ habilitation o f her sense o f self: “ I mean long-term, in five years, I expect to be A-OK, wonderful. You know, doing whatever I want to do—m arriage, having children.” The person confronted with dialysis is emotionally ambivalent, believing that relative to end stage disease, this will be a life-saving and potentially rehabilitating therapy, but knowing, too, that there are integral complications and serious difficulties associated with the treatment regimen. For some, dialysis will provide a consider­ ably improved quality o f life; others will continuously need to cope with a severely compromised life style. Helen, a 37-year-old woman, has lived with kidney disease for three years; during the last two years, she has been receiving dialysis treatments. Throughout this disease process, she has en­ countered a series o f medical problems and setbacks. In 1979, her legs swelled as a result o f fluid retention and she developed hyper­ tension. A year later, her kidney disease was diagnosed as lupus. She was hospitalized for three months as escalating edema resulted in “ water up to my knees,” and simple walking was curtailed. She developed severe and painful constipation, a problem beyond the simple moment of discomfort. “ I was not prepared for this constant pain; it was so unexpected, I screamed for people in the hospital to help m e.” A severe heart infection precipitated a coma, which lasted for days. Her family was told that Helen “ was close to death.” The decision to initiate dialysis was made and a fistula (vascular access) was placed in her arm in 1981. The dialysis experience has also been unpleasant for Helen. Her first feelings were that “ it was either dialysis or die. I had to accept it.” This ambivalence, embracing dialysis as lifesaving but resigned to the reality o f a difficult future, was reinforced during the first

74

SUFFERING

year of treatment and the associated problems: nausea, tiredness, the need for frequent naps and for significant fluid restrictions, which were difficult to accept in the Florida heat, susceptibility to bruising, which caused discomfort and a negative self-image. Helen is on a list of patients, each waiting and hoping to receive a donated kidney when someone dies. Throughout the process o f disease and dialysis, Helen has suf­ fered emotionally—feelings of depression and fear have predomin­ ated. Her psychological intactness has been threatened by the destruction of her body-image and sexuality and by the need to rees­ tablish normalcy and stability in her roles as mother, lover, and pro­ vider. Helen has been receiving some disability benefits for four years, not being able to work effectively or regularly at any job; a few have been tried unsuccessfully. She has been discouraged by weakness, tiredness, and hypertension. Her emotional resolve is compromised and inadequate: “ I couldn’t ever see myself being someone else’s burden. 1 needed to get better and thought of dialysis, but that didn’t happen. And then I was scared—how could I work, who would hire me?” She continues to wait and worry, believing it is impossible to be employed and become financially responsible for her own life. Her role as mother has also been redefined by disease and depen­ dence on dialysis. Being unhealthy and unable to work situates Helen differently in relationship to her daughter. She is home for extended periods of time, but unable to participate normally in ac­ tivities. It is disconcerting to have demands placed on her that would have been normal and acceptable, but are now threatening. Helen speaks of her frustration: “ She doesn’t understand what’s happen­ ing. She’s 13, she’s young and naive. I try explaining everything to her, but she’s forever complaining ‘You’re tired, you’re laying down, we never do anything.’ She’s driving me crazy.” Then, apologetically and as a clarification, she adds, “ There isn’t anything I wouldn’t do for my daughter, don’t get me wrong. But she’s a teenager and wants to do things. She’s lonely. I’m no company for her. We do argue constantly. I just have to get healthy again.” As with Nancy, disease impinges on Helen’s role as a lover. Fur­ thermore, Helen’s body-image is specifically diminished, contribut­ ing dramatically to her destructive concept of herself as a diseased person. She views herself in these terms, I’d have to say . . . that looking in the mirror and seeing

Kenneth Trachy

75

myself tormented me more than anything, more than being sick. To me I was disfigured. I felt like Frankenstein, like a monster with this thing sticking out of my wrist and my face looking like a football. Helen brought this self-victimizing body-image to the few poten­ tially romantic relationships she has encountered, usually choosing not to expose herself to any opportunity for male companionship. “ I don’t date. I wonder what guy would go out with a woman in this condition. Who would be willing to put up with that? Could some­ one love and care for a person like this?” She has revealed that one man hurt her terribly. The man was afraid to touch her or ‘‘have re­ lations,” afraid of causing bruising. He said to her, “ You’re not a woman, you’re a patient.” Helen articulates a continuing fear of in­ volvement and rejection, portraying herself as a woman who is in­ complete physically and, by extension, emotionally. “ My feelings are hurt very easily. I ’d rather do without these things if I have to .” For Helen, fear and desperation are mingled with strength and hopefulness. The daily fluctuations she experiences depend on the circumstances of her dialysis, physical health, and interactions with her daughter. Through it all, what does Helen do to engender good feelings? What does she conceptualize about her future? Now, at home, she works at crafts to “ get my mind off my troubles.” Her relationships with other patients are important: “ I try to help other people in the clinic now. I’m comfortable with it. It doesn’t bother me the way it did during the first few months, or even first year.” The support becomes reciprocal, an informal buddy system. “ I know other patients who have the same thing I do. I speak to them to try to understand what is happening to me and how they feel.” Ob­ servation of the dialysis environment also provokes a feeling of relief, an “ it could be worse” attitude. Helen says of one patient, “ I knew a gentleman who was very bad and felt that I was really better off.” There is a parallel with other patients with respect to ultimate cop­ ing and hopefulness. Helen describes her life in the long view in terms of health, a renewal of activities, and again, normalcy. She broaches this in the context of successful transplantations: “ I hope it gives me a new lease on life. I’m looking forward to it, in the sense that maybe I can get on with it. I’m too young. If the transplant works, I can start a routine. Getting a job is the main thing. I want to get my strength back, feel better about myself, start a relationship

76

SUFFERING

with my daughter. Be a mother and companion. Now I feel like a stranger.” Helen’s emotional distress is not significantly alleviated through other strong and supportive interpersonal relationships. She strug­ gles through intermittent and inconsistent communication with her family. They don’t understand why she ‘‘can’t do better with my daughter.” Interactions with other patients and a few close staff members provide her with some support and, as “ mostly a private person who doesn’t like to depend on others,” she experiences an essentially solitary emotional struggle. Jack, a 52-year-old man, was diagnosed as having polycystic kidney disease when he was in his forties. This ultimately lifethreatening affliction has been complicated by hypertension, bleeding, and fatigue. The course o f the disease was monitored for two-and-a-half years before hemodialysis became necessary in 1979. Throughout the chronic disease process, Jack maintained a rela­ tively normal life style that was only moderately compromised by his continuing tiredness and the necessity for dietary restrictions. During his years of dialysis, he endured anemia as well as particular problems such as prostatitis and a temporary colostomy. Jack’s adaptation has been remarkable; the sense of normalcy he experiences in his daily life is exceptional. Jack does not believe his life has been characteristic of a “ sufferer.” Two reasons are clearly responsible for that conclusion. First, the degree of actual physical distress and incompleteness he has experienced during his disease and dialysis have not prevented him from maintaining his normal roles, relationships, and employment. Second, to whatever extent his pursuit of an active life style was discouraged, Jack was not in­ hibited, but resolutely strived to accomplish all that he would have aspired to if he had been healthy. This coping is demonstrated as an attitude; a “ world view” articulated as values, beliefs; an article of faith. He said that dialysis presents an individual situation for each person and that “ How well you handle dialysis physically depends a lot on how well you handle it emotionally.” Jack brought a certain resolve and preparedness to his confrontation with illness and physi­ cal stress. My own particular psyche probably prepared me for the ordeal of dialysis. I think those individuals who have a background in athletics or other competition are able to cope differently. I

Kenneth Trttchy

77

really believe that my competitive early life style training allows me to look at dialysis and the physical ailments that have come along as being like those are some of your bad days, but if you fight your way through them there are going to be some good days yet. I ’m going to beat this; it’s not going to win. This philosophy has been concretely applied to his career as a square-dance caller. This is more than a livelihood; it always has provided him a “ sense of belonging’’ with friends and colleagues. I really believe my line of work has made a difference. I work with lots of people every night. They demand something of me. “ Hurry up and get well; we want you back.” I ’m nothing but a little square-dance caller, but I know I mean a lot to all those people who share that community with me. That impetus is reinforced by his moment-to-moment enjoyment of his work, the hands-on experience. “ I do love what I’m doing and am anxious to get back to work. Now I look at square-dance calling not as a job, but as therapy; it keeps me going.” Jack’s “ network of support” is anchored by strongly bonded family relationships, especially with his wife. “ We had been mar­ ried 25 years when dialysis began, and the initial strain, the unknown wondering about how would I handle this, was difficult for us. But she has always been supportive, my strength, and we have a wonderful relationship.” Three children who are supportive, ver­ bally and by their presence, complete the nuclear family. Their common goal is expressed this way: “ We try to keep life, with the exception of dialysis three times a week, as normal as possible.” Self-concept is a function of and encompasses all of a person’s perceived qualities and how they are expressed; the sense of mental and emotional well-being, as well as physical health. It circum­ scribes one’s sense of esteem, competence, body image, and the need for self-determination. To the degree that illness engenders physical distress and emotional discomfort, individuals will ex­ perience what Cassell (1982) and I define as suffering. Nancy, Helen, and Jack have, with varying intensity, endured emotional and psychological disintegration. Each has attempted to cope with and assuage this suffering so that a strong and healthy self-concept may be reestablished.

78

SUFFERING

I believe that Jack has integrated these aspects o f coping into his life, attitudinally and behaviorally. He demonstrates a day-to-day ability to maintain the greatest possible degree of physical participa­ tion and to share communication and closeness with his family and friends. Most important, he is intellectually aware of both the realis­ tic expectations and the required limitations of his life style. Jack has placed his dependence in perspective. He focuses on what can be controlled and realizes a large measure o f independence and self-de­ termination. The question needs to be posed: What of those persons who are not to receive transplants, who must endure physical discomfort and constraints on their life styles indefinitely? Jack and I discussed this relative to his life. What if his situation was different, less satisfac­ tory? What if his square-dance calling was curtailed? Jack defined coping as a “ mental challenge,” with the premise that you accept specific trade-offs, given a realistic appraisal of your individual sit­ uation. He admonished patients to “ find something you can win at, let it capture your attention, your imagination. Then your energy level increases and you want to do m ore.” Jack would consider op­ tions having to do with a different life style. “ What did I like as a sedentary person? What energizes me creatively and mentally? How can I establish a routine that gives responsibility and constancy to my life?” I encourage health care professionals to be aware of the duality of patients’ struggles to reassert themselves emotionally and to sur­ mount physically debilitating illness. I suggest that a recognition of realistic expectations, combined with therapeutic communication and supportive relationships, are essential to promoting the greatest degree of patient integrity and healing. REFERENCE Cassell, E J . 1982. " T h e Nature o f Suffering and the Goals o f M edicine,” New England Journal o f Medicine 306: 639-645.

Cancer Patients and Radiotherapy: Close Encounters of a Third Kind Lynda R. Mandell Tapan Hazra Henry L. Tomlin

Cancer patients: rather frightened individuals whose lives have become ones o f anxiety, uncertainty, pain, and withdrawal. They grasp whatever lifeline is offered, placing themselves at the mercy of doctors. In doctors’ search for a cure, the question soon becomes quite evident: what is the best treatment plan for the patient? Confronted with illness, the patient wants and needs us to un­ derstand that he is now in pain and that he may be afraid. He may find him self in an unfamiliar place such as an office or hospital, surrounded by strangers who he hopes will help him. Illness forces him to relinquish a very important part o f his autonomy, his sense o f control over himself and his life. In such a setting, the individual by necessity reverts both physi­ cally and psychologically to a situation in which he has to be cared for by others. This dependence on other people enhances the sense o f helplessness and vulnerability created by the disease process. (Simons and Pardes 1977: 9-10) For cancer patients, radiation therapy is a “ close encounter of a third kind,” an entrance into a new and intangible world o f physics and radiobiology, a stop-off, an exit. And still the threat o f death re­ mains alive. In an attempt to understand this experience and thereby to better serve the needs o f the patients undergoing radiation therapy, we devised a questionnaire designed to elicit patients’ attiLynda R. Mandell, P h.D ., M .D ., Department of Radiation Therapy, Memorial Sloan Kettering Cancer Center, New York, NY 10021. Tapan Hazra, M .D ., Chairman, Depart­ ment o f Radiation Therapy, Medical College o f Virginia, Virginia Commonwealth Universi­ ty, Richmond, VA 23233. Henry L. Tomlin, M .D ., Department o f Radiation Therapy, Medical College of Virginia, Virginia Commonwealth University, Richmond, VA 23233.

79

80

SUFFERING

tudes and feelings about radiation therapy as an entity apart from other existing and prevalent modes of cancer treatment. Fifty pa­ tients were randomly selected to represent the three periods of treat­ ment: (1) preradiotherapy, in which the patient is evaluated for pos­ sible radiotherapy; (2) the interim period during which the patient is receiving radiotherapy; and (3) post-radiotherapy when the therapy has been completed and the patient is returning for follow-up exam­ inations. The answers, obtained during interviews, were quite re­ vealing. The questions used were chosen for their capacity to evoke similar responses repetitively as well as to expose some of the com­ mon problems encountered by cancer patients during their “ Close encounter of the third kind.” We must remember that radiotherapy patients are individuals who progressively meander through various stages of adaptive responses to their disease. I prefer to divide this process into three divisions rather than the well-known five stages of Kubler-Ross’ (1969) inter­ pretation of the human coping mechanisms that come into action at the time of a terminal illness. These three divisions are denial and isolation, which progress to anger, bargaining, and depression, and then finally to acceptance. These three stages are based on the defense mechanisms used to adapt to a potentially fatal, disfiguring, and disabling disease, but not to face death itself. They are all per­ vaded with fear of the unknown, as well as frequent lapses into depression that is secondary to a feeling of helplessness in the face of recurrent or constant pain. At times depression arises from the difficulty of learning to function again minus a vital body part that has been removed in the surgical attempt to effect cure. Depression does not assume a separate role in this staging. Instead, it is ubiqui­ tous, but more powerful at certain moments than at others. The initial stage of shock begins at the moment when the patient is first informed that a malignancy is present. At this point, individuals become almost totally drawn within themselves, preoccupied with internal conflicts without the ability to deal productively with the ex­ ternal world. Their daily performance is trance-like, without any recognition of the actions they are going through. They are, therefore, very dependent on external support for direction and guidance from friends, family, or the medical staff about where to go for medical help, how to get there and, in fact, how to make it through the day constructively. If their coping skills are intact, the patients usually do not remain in this stage for more than one month, at which time they pass into the next stage of denial and anger.

Mandell, Hazra, and Tomlin

81

In this context, denial is best defined as a refusal to discuss the disease itself or its various negative implications for the future. Pa­ tients will readily use the word cancer, but they are not yet ready to make an association between their bodies, their beings, and the disease. They still feel relatively healthy and are able to function physically. They can neither believe nor understand what they can­ not see or feel. They may experience pain or other symptoms, but they rationalize about them, relating them to something else, not to cancer: “ It can’t be—I ’m not that ugly, sick, decrepit, diseased per­ son that I associate with cancer. ’ ’ They then become angry that their daily lives have been disturbed, that they have had to stop working, or that they must remodel their life styles. Thus, in this stage, em ­ phasis is placed on the immediate, tem porary, imminent aspects o f life, the daily hassles and inconveniences. Patients need time to un­ derstand cancer. They need time to understand that the medical di­ agnosis is usually accurate, but that cancer does not necessarily de­ stroy overnight and may, in fact, progress at first with few signs or symptoms. They need time to understand that in spite o f this, cancer is quite real and relentless and will require medical attentiveness to achieve a possible cure o r palliation, as well as for them to make a psychosocial and emotional adaptation. This opens the door to the final stage o f acceptance. During the acceptance stage, effectual coping mechanisms reach a pinnacle. Patients submit to fate and attempt a reconciliation with the external world, a redefinition o f their relationship to it, shaped by the onerous and untimely imposition o f cancer. The more trans­ cendental questions arise at this time, when individuals are plagued by thoughts o f the future, the quality o f their lives, and the possibili­ ty of death. Spiritual faith competes with gnawing doubt during this prolonged stage. This stage is brought to an end either by a recur­ rence o f the supposedly cured or controlled cancer, which in turn re-initiates the cyclical staging process, or by death itself, which ter­ minates the staging cycle. Besides passing through the periods o f pretreatment, treatment, and posttreatment—each with its own intrinsic character and de­ mands—radiotherapy patients simultaneously progress through the stages o f emotional coping dictated by the disease itself. This fact must be taken into account in any attempt at evaluating patients’ re­ sponses to the radiotherapy experience. The emotional stage the pa­ tient is at during any particular treatment period depends on the lapse o f time between diagnosis and the initiation o f therapy. For in­

82

SUFFERING

stance, if the pretreatment period has been long enough, the patient may very well have reached the second or even the third stage. This can occur in the case of other treatment modalities tried, with radio­ therapy as a later or even final resort. It is interesting to note that most of the patients in our survey did not wait more than two weeks between being referred for radiotherapy and presenting themselves for it. Patients who waited as long as two weeks did so because of transportation or lodging problems and not because of a personal desire to wait. Similarly, if the treatment period is relatively short, so that patients have not had enough time to reach acceptance of their disease, they may reach post-treatment still in denial of their disease and may feel angry. The adaptive stage that the individual patient is in during therapy is of importance in accurately assessing answers and reactions to specific questions about radiotherapy. Although we feel that it is important to acknowledge individuals relatively, in drawing conclusions we have limited ourselves to the majority opinion and emotional state whenever possible. For exam­ ple, if in dealing with interim treatment we assessed most patients as being at stage II, the discussion will reflect this. In the preradiation therapy group, there were 20 patients. Fifteen of these patients were interviewed at the time of their initial diagno­ sis, the other five patients were interviewed at the time o f disease re­ currence. O f these, 11 were told that radiotherapy was the only or the best treatment. The remaining nine, including the five patients with recurrent disease, were told that radiotherapy was either the last resort or an adjunct palliative or preventive measure. It is inter­ esting to note that 18 of these 20 patients came to radiotherapy within two weeks after their disease had been diagnosed. The other two had previously received an alternative choice of treatment, and radiation therapy was presented to them as a last resort. Most of these 20 patients appeared to be in a state of shock. Our questions were answered by almost expressionless masks. These patients weren’t quite sure what was happening to them. They did not know what radiation therapy was all about. They came because they were told to: they were just following directions. They weren’t able to formulate questions about the treatment, and didn’t seem able yet to assume that responsibility. However, when guided in their thinking and asked if they were concerned or curious about radiation thera­ py, their facial expressions changed to reflect anxiety and fright. They then responded affirmatively. Pursuing that issue, we discov­ ered that they really wanted to know if the radiation therapy would

Mandell, Hazra, and Tomlin

83

help and what its side effects might be. In other words, they were concerned with preparing themselves emotionally for an unknown world. They were not only confronted with a potentially devastating disease, but also with a frightening experience in which the only hint that treatment is in progress is the sound of machinery at work. A few patients were approached by others who had received or were undergoing radiotherapy. The ensuing exchange of questions and answers, the experience of seeing others who could explain the pro­ cedure and who were living evidence o f its benefit proved, for the most part, to be calming. During pretreatment, patients do need to be prepared for their first encounter with radiation therapy. They are frightened and don’t know what to expect. They are concerned by conversations or intellectualizations about the therapy. They have specific questions: Will it hurt? How long does each treatment last? Will I become radioac­ tive? What side effects can I expect? Will the therapy help my pain, my breathing, my swollen belly? And most important of all, will it cure me? They need to be approached with answers to these ques­ tions. They just aren’t able to reach out and ask. Patients do need to be told the possible side effects of therapy and what can be done to control them before they occur. Without this information, many pa­ tients tend to attribute side effects to the spread of cancer and thus experience needless anxiety and suffering. The question-and-answer period should begin before the initial treatment and continue during and after treatment. The physicians and ancillary medical staff should be integral participants in this in­ terplay with patients. The group could also include individuals who have already been through radiotherapy. These individuals might be more attuned to the patients’ needs and might also be more readily accepted by them. This task force should have representatives in local communities to aid with transportation, as well as to respond to basic questions about the treatment itself. It would also have to re­ main intimately associated with local physicians, clinics, and hospi­ tals to maintain its position of liaison. Another dramatic means of preparing patients for radiotherapy might be a waiting-room library equipped with pamphlets and books at all educational levels to explain the techniques and rationale for radiotherapy, as well as for other modalities of cancer treatment. This resource, under the guidance of a librarian-receptionist, could begin serving its function for patients on the day of their first visit to the treatment center. Orientation movies prepared by individual

84

SUFFERING

treatment centers could also present a step-by-step introduction to each phase o f the radiotherapy experience, including such scenes as the waiting room, simulation for treatment planning, and the treat­ ment itself. This might allay many o f the patients’ misconceptions or fears. A special room could be set aside in the treatment center to allow patients who are bedridden or who have other special prob­ lems to view the orientation film. This room should be arranged so that the projector and screen could be placed at the appropriate side, level, and distance to accommodate individual needs. An up-to-date list o f volunteer services, cancer organizations, transportation ser­ vices, and hospital support personnel such as nutritionists and social workers could be posted on a bulletin board for patient use. To pro­ mote understanding for patients who are hospitalized during treat­ ment, a member of the task force could make a preparatory room visit. Each patient’s initial visit with the radiotherapist is crucial. Pa­ tients need to trust their doctors. This need must be fulfilled. Deal­ ing honestly with patients and in terms they can understand is impor­ tant. Patients know or fear that they have cancer and are often able to recognize evasion. Being so dependent on external help, patients would probably benefit from knowing their doctor’s name and hav­ ing a card imprinted with the name and a telephone number to be used in case o f emergency or questions. We interviewed 25 patients who were in the interim period o f ac­ tual treatment. Six o f these patients had recurrent disease and 19 had newly diagnosed disease. In this group, only three patients waited more than two weeks from the moment o f diagnosis to begin radiotherapy. For these patients, the length o f their wait was not voluntary, but was imposed by other treatments that were tried first. We may infer, therefore, that patients in this group probably arrived in the same state o f shock as those in the first group just discussed (i.e., shock) and with the same needs. These patients, for the most part, did not want to discuss their disease; in fact, they were trying not even to think about it. This avoidance and denial extended into their reactions to radiotherapy. They were not very responsive to learning about radiotherapy at this time. They were mainly concerned with resuming their previous life styles and with terminating what they perceived as a troublesome and imposing break in their daily routines. They were angry at their disease for causing such pain and helplessness, and for interrupting their lives. They projected this hostility toward the many new inconveniences associated with treat-

Mandell, Hazra, and Tomlin

85

ment, such as parking and transportation problems, the demand that they come for daily treatment, the side effects o f treatment, and the depressing and unfair aspects o f the waiting room, where very ill patients are exposed to apparently healthy ones. If patients were exposed to the pretreatment preparation de­ scribed earlier, perhaps their denial and anger would give way more rapidly to the more productive stage of réadaptation to society. More important, especially in relation to our concern with making the radiotherapy experience less awesome and less impersonal, these patients might find coping with the experience less stressful and less emotionally trying. They might continue to use the auxiliary services with which they are already familiar and comfortable. In any case, the waiting room need not provoke anguish. Perhaps a physical separation between the very ill and the outpatients by the establishment of two distinct waiting areas might alleviate some of the anxiety. It is interesting that among patients in the pretreatment group, the waiting room provoked little or no anxiety, probably because of the state of emotional shock in which most of these pa­ tients presented. We interviewed five posttreatment patients, one with recurrent cancer and the other four with new disease. These patients were at­ tempting re-entry into society with a newly defined role and selfimage. They were apprehensive of the many new demands ahead of them and fearful of not being physically able to fulfill them. As a rule, these patients realized the impossibility of resuming their pre­ vious jobs. The burden of financial insecurity was now a reality, as was the relentless imposition of untimely retirement. These patients were loquacious, anxious to discuss the future, their plans, their disease, and the possibility o f its recurrence. Their emotional lives were now governed by the daily fear of recurrence, especially if they had previously been told that radiation therapy was a last resort and that further treatment could not be given. These patients would be ideal candidates to staff a task force di­ rected at preparing pretreatment patients. They are reaching out for communication and contact with other individuals who share a simi­ lar fate. They are frightened of disease recurrence, and helping others might alleviate some of their anxiety. They are not only desir­ ous, but also emotionally capable of learning more about their disease. This would be an ideal time for them to learn about radio­ therapy in order to instruct others about its side effects. They could maintain a sense of self-dignity by engaging in constructive work

86

SUFFERING

and still have the opportunity to work within the limits of their physical endurance. For cancer patients, radiation therapy is a “ close encounter of the third kind” —an entrance, a stop-off, an exit—and still the threat of death remains alive. It is important to understand the psychological, as well as the physical needs of cancer patients. We may, in this manner, succeed in palliating unnecessary anxiety and stress. This could benefit the treatment process by improving patients’ compli­ ance and self-care, in addition to reducing the effects of stress as a possible etiological factor (Simonton et al., 1978). We must, there­ fore, reach out and try to understand our cancer patients if we hope to fulfill their needs and help them. “ Of all the human needs that have been listed and categorized from time immemorial, perhaps the most fundamental o f all is the need to be understood” (Simons and Pardes, 1977:7).

REFERENCES Kühler-Ross, E. 1969. On Death and Dying. New York: Macmillan. Simons, R. C . and H. Pardes. 1977. Understanding Human Behavior in Health and Illness. Baltimore: Williams and W ilkins. Simonton, O .C ., S. M atthews-Simonton, and J. Creighton. 1978. Getting Well Again. Los Angeles: J. P. Tarcher, Inc., pp. 86-90.

Experiences in a Hospice: The AIDS Patient Sister Patrice Murphy

Hospice is concerned with dying, death, and grief. It is not neces­ sarily a place to go to die; it is much more a philosophy of caring that says to the dying person, “ You matter because you are you. You matter until the last moment of your life, and I will do anything possible to help you live fully.” Hospice is both a response to the existing status of health care and a stimulus to the health care system to respond to changing societal values. Hospice comes in when all efforts at cure are no longer effective, and when care is aimed at providing physical, emotional, and spiritual comfort. Hospice care is offered not only to the patient but also to the family, and is provided in a choice of environments by a comprehensive multidisciplinary team of professionals and trained volunteers. Hospice care focuses on living rather than on dying, and on living to the fullest whatever time remains. Hospice continues its caring into the bereavement period by offering a variety of supportive services to grieving family members until after the first anniversary of the patient’s death. Over the last five years, the Hospice Program at St. Vincent’s Hospital and Medical Center (New York City) has attempted to of­ fer this type of care and caring to terminally ill patients and their loved ones. The largest percentage of our patients have had various forms of cancer, but others have had cardiac, lung, renal, and liver diseases. Their ages have ranged from the early twenties to the mid­ nineties. Our team members have witnessed, both in patients and in their loved ones, an enormous amount of suffering that includes every aspect of the definition: “ to undergo or feel pain or distress; to sustain injury or loss; to be the object of some action; to endure or hold out patiently; to undergo, be subjected to pain, distress, injury, loss or anything unpleasant” (Random House Dictionary, 1982). Sister Patricc M urphy, Director, St. V incent's Hospice, St. Vincent’s Hospital and Med­ ical Center, New York, NY 10011.

87

88

SUFFERING

Almost everyone o f us has known suffering to some degree—whether in themselves, a loved one, or an associate—because diseases o f these kinds are not respecters o f persons. Over the past two years, the Hospice staff at St. Vincent’s has felt summoned to address its care and caring to another group o f suffer­ ers, those diagnosed as having Acquired Immune Deficiency Syn­ drom e, commonly known as AIDS. Throughout its history, St. Vin­ cent’s Hospital has focused on ministering to the sick and poor of New York. Its mission continues to be the offering o f healing and health, when these are possible, and com fort, compassion, and dignity in other instances. It seemed only right and just that the Hospice staff extend its expertise—the fruit o f its experiences with so many other suffering peoples—to this group o f afflicted persons. As is commonly known, the largest segment o f society afflicted with AIDS is the homosexual community. St. Vincent’s Hospital, in the heart o f Greenwich Village, has become one o f the hospitals to which many o f these young men turn for care and, unfortunately, where many o f them have died. There are many, too many, unknowns about AIDS, but at this time we do know that no one survives it; it is fatal. There are a few who have survived for as long as four years. A small percentage die quickly, in a matter o f weeks, despite all efforts to save them. AIDS has been referred to as the “ epidemic o f the twentieth century” . To comprehend the suffering o f these particular persons. I believe we have to look at some facts surrounding homosexuality. Few topics in society today arouse strong personal feelings in the way occasioned by the subject o f homosexuality. Few other issues discussed in any community, be it political, health care, or church, are as difficult and complex. Homosexuality, a human reality, touches many lives—those o f families, pastors, educators, politi­ cians, civil or human rights activists, deliverers o f health care, and others. If we are honest, many o f us discover that we have “ hom ophobia,” that is an “ irrational fear, intolerance, or dread on the part o f heterosexual people o f being in close proximity to people they believe to be homosexually oriented.” Homosexually oriented persons find themselves faced with many o f the same difficulties ex­ perienced by other minorities: fear, prejudice, rejection, alienation, isolation, oppression from those who form the majority. Most homosexuals did not want to be homosexual, and are sorry they are homosexual. Many have tried to deny their orientation by marrying and having children, trying to live a lie until they could no

Sister Patrice Murphy

89

longer tolerate it. Facing and living with their real identity becomes a life-long challenge. Homosexuals are accused o f being sick, o f be­ ing responsible for a condition they could change if they really wanted to. They are accused o f recruiting and molesting the young. Who are those who reject, isolate, harangue, ostracize, and ac­ cuse homosexuals? Frequently, they are parents, brothers, sisters, friends, co-workers, employers, priests, and ministers—those peo­ ple to whom we all turn in time o f trouble. Is this not suffering? Re­ cently a friend o f mine who was counseling a young homosexual tried to reassure him o f G od’s love for him. His response was, “ How can God love me? I am one o f His mistakes!” Is this not suf­ fering? It is if we agree that suffering is experienced by persons, not merely by bodies, and that it has its source in challenges that threaten the intactness o f the person as a complex social and psychological entity. The young homosexual man with AIDS is generally anywhere from 21 to 46, usually one who previously has had good health—often, in fact, one who has jogged and “ worked out” regu­ larly. He may be a teacher, an artist, an actor, a journalist, a school principal, a real estate agent, a minister, or a priest. Most frequently he is handsome, talented, and sensitive. Suddenly, he is faced with an as yet incurable disease: he is going to die, and soon. This is not an idle threat—here and now there is only one release from AIDS. That release is death unless, in G od’s wisdom and providence, He sees fit to perform a miracle. What does such suffering do to an individual? If it occurs to a per­ son for whom life has held failures or whose self-image is damaged, as it often is in gay persons, it confirms his own low estimate o f him­ self. Individuals who are ill suffer many losses. Those who have AIDS, who may have already felt the cool withdrawal o f parents, relatives, and friends or who have deprived themselves o f relation­ ships with parents and other family members in order to protect them from the truth now begin another process o f loss, that o f loss o f themselves in relation to the world o f events, persons, and the re­ lationships in their current life. Like all others, homosexual men stricken with AIDS have had roles. Many have lost o r relinquished their roles as son, brother, grandchild, husband, or father. If, in ad­ dition, this illness means that the patient is an actor who cannot act, an artist who cannot paint, a lover who cannot love, he is further diminished by his loss o f still another role. If an individual cannot do the things he identifies with the fact o f his being, he is no longer

90

SUFFERING

whole. In addition, AIDS almost always alters a patient’s body dras­ tically. Thus, he no longer sees his body as a friend, but as an enemy, and extremely vulnerable. The sense of selfhood contracts over and over again. We all have a perceived future for ourselves, our talents, and our loved ones. There is hope in this element o f being, and tremendous suffering attends the loss o f hope. AIDS patients have families somewhere. Their families usually learn o f their illness even if they are not told directly. The patient suffers sadness, shame, guilt, and anger when family members make an appearance. The family members suffer confusion, grief, shock, perhaps embarrassment, guilt, and shame. Suffering is the constant attendant o f those who have AIDS and of those who would share in their affliction. The lover o f one AIDS patient shared some thoughts with me: The look o f terror and my pain o f impotence to change the situ­ ation. . . . In these moments (lifetimes) you reassure where there is none. You smile over the tears, the hurt, the anguish. My God, how it hurts; even now. The suffering here is unique because you can’t share with those around you [co-workers]. You can’t show o r try not to show the anxiety and the pain. The day it all ended—at least life as we know it—he lay there, eyes open, mouth reposed in a permanent sleep. I don’t know what occurred first: the cram p in my throat, the heartwrenching pain, the stab o f realization, the soundless emptiness. Then looking into those empty eyes that shined so before, looking at those arms that held me so often—still, the pain and suffering. Oh my God, those words cannot describe it. If this isn’t hell, then God help those who are destined to that place. I have not touched on the physical pain o f AIDS. Suffice it to say that the ever-present enemies are profound fatigue and weakness, difficulty in breathing, fevers and chills, sores in the mouth, the esophagus, the genitals, and over the body surface, debilitating diar­ rhea, nausea, and vomiting. No wonder patients have said to caregivers, “ I feel like a leper!” What do Hospice caregivers do for persons with AIDS? They facilitate the rendering o f optimal medical and nursing care; they listen to the sadness as they search for hope; they are a comforting presence in the face o f sorrow and despair; they try alone or in con­ junction with other agencies to discover and respond to the attendant

Sister Patrice Murphy

91

financial stresses; they strive to respond to the good times, the periods o f remission and to help pave the way home for any period o f time; they minister to the human spirit trying to m irror the love and mercy o f God. Hospice extends itself to parents and other loved ones with compassionate understanding o f their sorrow and pain. It offers warmth and caring as it intervenes with the best each involved profession can summon. It expresses in action the words used earlier: “ You matter because you are y o u .”

T h is p a g e intentionally left blank

Suffering Leonard M. Liegner

Attempting to speak about suffering might indicate a presump­ tuousness in one’s attitude about those who have suffered. Anything said objectively stands in vague contrast to the stark reality of the suffering that has gone on among all people. To discuss the suffer­ ing of patients, their family constellations, and those of us who render care to them, and to discuss the effect o f that suffering on society in general appears to be a sophomoric exercise and philo­ sophical dilettantism. However, I could see the value in continuing such deliberations if this induced a greater sense of humanity in each of us and in society. Perhaps we should seek forgiveness for the neglect we have demonstrated in the past and continue to demon­ strate when we fail to support and feel for the suffering humanity that continues to cry out for our help. Will uncovering the suffering of patients and those concerned with them heighten our sensitivity to their problems? If so, will that heightened sensitivity lead caregivers to more compassion and greater efforts to document the sources of this suffering? Will heightened sensitivity enable us to set up criteria to recognize suffer­ ing and to bring about, through individual, institutional, and legisla­ tive action, beneficial changes that would reduce suffering? Merely to look at suffering without reducing or eliminating it represents to me voyeuristic curiosity. How do we recognize suffering? What criteria should we use? What part do we play in creating or perpetuating suffering? How does our own psychology interplay in reacting to suffering? What are the societal spinoffs of patient suffering, and to what end? I consider suffering to be indigenous to the human condition and specific to all who are patients, regardless of their disease and whether it originates in the body, mind, or both. The word “ suffer” Leonard M. Liegner, M .D., Associate Professor of Radiology, College of Physicians and Surgeons, Columbia University, New York, NY ; Chief, Radiation Oncology, St. Luke's Hospital and Medical Center, New York, NY 10025.

94

SUFFERING

stems from the word meaning “ to bear,” and not only implies that sufferers are victims, but also that they endure willingly and patient­ ly, as did the religious martyrs of ancient times. One can endure mental or physical pain whether it arises from within or without. Suffering can be a consequence of the deterioration or alteration of a particular state. It can also mean to endure or undergo without giv­ ing up, to have the power to resist or sustain, to support or to bear up under, or to put up with. In the present context, all definitions pertain. We should realize that suffering also has positive aspects. On an individual basis, the suffering o f patients, their families, and the community can lead to the spiritual and psychological growth of all concerned. It is only necessary to note the support that patients who have various illnesses, particularly cancer, offer to their friends and families, let alone their physicians, despite their suffering. Some patients are more concerned about our well-being than their own, and give service to their fellow patients. Suffering hardens the resolve of many patients to survive against all odds. Suffering per­ mits others to accept a loved one’s death with dignity and grace. Personalities can blossom under the impact of adversity and suf­ fering. I do not recommend the voluntary imposition of suffering, but do observe that religious sects over the centuries have practiced self-flagellation to identify with Christ’s suffering. As the last word in suffering for humanity, Christians would identify Christ’s cruci­ fixion as a positive step for humanity. The simplest examples of the suffering of patients can be what first comes to mind: the pain o f trauma and injury, the pain that follows surgery, the pain of blood-taking and injections, the pain of physical examinations that involve the pathology of various organ systems, and the pain of invasive diagnostic procedures, including the simplest oral or rectal examinations and, for women, vaginal ex­ aminations. What matters most to patients is the control of their pain and symptoms. For this, hospices have offered the most integrated approach to lessening suffering. Nevertheless, the instances of pos­ sible suffering included by the medical condition of individual pa­ tients and the medical environments in which they find themselves are countless. The foregoing possible sources of suffering are almost givens in medical care. Pain perception varies from patient to patient and, in many instances, from procedure to procedure. The suffering of patients is magnified at the hands of insensitive, rough, and in­ competent medical personnel, be they professionals, technicians, or

Leonard M. Liegner

95

support staff. Thus, the degree o f pain caused also varies from physician to physician, technician to technician, and health care­ giver to health caregiver. More serious is the suffering patients experience through indigni­ ties imposed by their diseases and the manner in which they are treated in the hospital, the clinic, and the physician’s waiting room. Patients’ suffering is increased by the erosion o f their independence and free will and by the usurpation o f their role in decision making and control of their treatment by their families and physicians. The ultimate suffering is for patients to be maintained by treatments and artificial support beyond the point o f rationality and when the hope o f restored functioning is long past. Living wills are an attempt to reduce this form o f suffering by allowing patients to make intelligent decisions before irreversible deterioration sets in. How do we recognize suffering? All o f us have suffered and yet, in the presence of suffering in others, we suppress our awareness, reluctant to invade their privacy. We look at suffering with unseeing eyes, embarrassed to verbalize, question, and act appropriately. The criteria are within our perception. How can I permit the patient to be physically exposed, to cry out for the bedpan, to lie unattended for long periods in a urine- o r feces-soiled bed, to suffer the inhu­ man behavior o f that not infrequently rejecting night staff. Yes, there are patient advocates who placate patients. There are also staff who, once informed o f patients’ complaints, fail to confront and report incidents that have caused patients to suffer. There are chiefs o f service or directors o f nursing who, when such an incident has been reported to them, do not act and thus fail in their duty to protect the rights o f patients. There are administrators who, for various reasons, ignore patients in favor o f staff, right or wrong. We have all heard that “ It is the patient who is uncooperative, imbalanced, demanding, who requires psychiatric consultation and sedation.’’ What we must do is identify for ourselves what we would not wish to suffer ourselves. We must deal with each situation as though we were the concerned and loving relative o f the patient. O f course, awareness o f the many and varied feelings aroused in us in the pres­ ence o f illness, as well as the anger and feelings o f rejection in­ duced, may enable us to be truly compassionate rather than to react to our guilt. We should permit ourselves all feelings and, being aware o f them, should still behave properly. One can envision two categories o f suffering patients: coping suf­ ferers and non-coping sufferers. Those in each category exert an

96

SUFFERING

ever-expanding influence on those about them, including the com­ munity. In the first category are the noble sufferers whose grace and behavior is a positive influence on all who come in contact with them. This influence extends to the community via newsworthy items and to the theatre, where the suffering of those afflicted with disease or who are terminally ill is portrayed in heroic proportions. Our stress is lessened by such experiences. The depresssion and hopelessness of those in the second category extend only as far as their immediate families and caregivers, and perhaps to the com­ munity of involved friends. The tragedy of such sufferers rarely becomes news or the basis of a novel, play, or film. We naturally seek out those experiences that energize our spirits. A few individu­ als, like Mother Teresa, work among vanquished sufferers; unlike Mother Teresa, these people are usually unsung for their work. It is from such people that we draw our inspiration and sustenance, and not necessarily from the sufferers themselves. In my 30 years of experience with cancer patients, none have challenged my ethical, moral, religious attitudes, and compassion as have AIDS victims. I have yet to come to peace with the horrendous feelings aroused by these pathetic modern lepers. Only by sheer force of will and conscious adherence to the Hippocratic Oath have I and my staff extended humane treatment to those unfortunately af­ flicted with the malignant tumors that are a manifestation of their disease. Contrasted with AIDS, cancer becomes a pleasant and almost hopeful affliction. I believe conferences on the care of AIDS patients are necessary to test the mettle of those involved in their care and to allow them to share their honest reactions and feelings. I remind myself that conscious awareness of what goes on with patients, if translated into individual action, bears the best hope that we may appreciate patients’ suffering. From those patients who can offer it to us, we can gain strength and the ability to give fullest sup­ port, both in deeds and words, to those patients who do not have the inner resources to prevail.

Home Care for the Dying Child with Cancer: Feasibility and Desirability Ida M. Martinson

BACKGROUND Despite encouraging advances in the treatment of childhood can­ cer, death remains the long-term prognosis for some children with cancer. Hospitals have traditionally been the setting for the treat­ ment of children with cancer. Hospitalization is, however, particu­ larly frightening and upsetting to children. For children under five years old, the greatest fear is caused by separation from their mothers, in addition to separation from other family members, the home, and their playthings. Hospitalization forces separation from the mother at the same time that it introduces the child to new people and places and, frequently, to painful routines. In addition to their fear of separation, children over five are preoccupied with threats to their bodily integrity and functioning (Spinetta, Rigler, and Karon, 1973). Children’s need for their parents increases markedly during serious illness, but hospitalization has traditionally reduced their ac­ cess to them. Currently, pediatric oncologists often attempt to ad­ minister cancer treatment protocols to children on an outpatient basis. However, when these treatment protocols have been ex­ hausted and their cancer is still out of control, children are generally hospitalized for the final days of their lives. As a result of the attention directed in the late 1960s and 1970s to children’s needs during hospitalization, including the need to under­ stand their disease status, health care professionals have attempted to change their facilities to meet these needs (Green, 1967; Kundson Ida M. Martinson, Ph.D., Professor and Chair, Department of Family Health Care Nurs­ ing, School of Nursing, University of California, San Francisco, CA 94143. This research was supported in part by DHEW, National Cancer Institute, Grant, CA 19490.

97

98

SUFFERING

and Natterson, 1960; Easson, 1976; Spinetta, 1974; Waechter, 1971; Bluebond-Langner, 1978). For instance, rooming-in is be­ coming available for mothers, and family members may visit at any time (Sauer, 1976; Friedman, 1977). Attempts are also currently being made to encourage family participation in the child’s care in the hospital (Ayer, 1978; Korsch, 1978; Hardgrove and Kermoian, 1978; Jackson, 1978). Changes in communication among dying children, their families, and health care professionals are also being encouraged. Parents and professionals are encouraged to be honest and supportive in their openness with these children, allowing them to ask questions as often or as infrequently as they can emotionally handle. Despite these progressive changes in acute-care hospitals, such facilities are somewhat at odds with the needs of dying patients, both children and adults. Hospitals focus on curative, restorative care; their technology, protocols, and professionals all work toward the goal of cure or restoration. People with diseases that have failed to respond to this approach no longer appear to fit into the hospital framework of health care delivery. Hospice care is an alternative to acute-care hospitalization for dying adults and children. July 1967 marked the opening of the well-known St. Christopher’s Hospice in Sydenham, England (Saunders, 1975). Numerous other hospice fac­ ilities have been developed since then (Lack and Buckingham, 1978; Mount, 1976; Hackley et al., 1978; Lamers, 1978), and most of them are based on the St. Christopher’s model. St. Christopher’s Hospice has a 55-bed inpatient facility that seeks to provide physi­ cal, emotional, social, and spiritual care to dying patients, predom­ inantly those dying from cancer. The main objective is to provide comfort care; special attention is paid to pain control. The skills of physicians, nurses, social workers, clergy, pharmacists, volunteers, and others are joined to help dying patients. The patients’ families are involved and bereavement services are provided to assist surviv­ ing members. Home care is another method of health care delivery to the dying. Dying children usually wish to be at home, to have their parents at hand and not to be subjected to unnecessary intrusive procedures. These wishes are not antithetical to the children’s needs. Parents are the normal providers of their child’s care and emotional support, and may continue to give care in their own home even when the child is dying. Home care has been central to the development of hospice services. Patients receiving home care having nursing and

Ida M. Martinson

99

other services available to them 24 hours a day. Should home care be no longer desired or feasible, the dying patient may enter an inpa­ tient hospice facility that strives to provide a home-like atmosphere and places few restrictions on visits. Home-care services have been available in the United States for adults and children since the early 1900s (Freeman, 1963) through public health and visiting nurses agencies. However, public health nursing agencies have not traditionally been structured to provide the 24-hour, seven-day-a-week coverage that is an important com ­ ponent of comfort-care services offered at hospice facilities. Hospital-based home care programs have been increasing in number, but have not typically provided 24-hour coverage.

PURPOSE The purpose o f this study was to explore the feasibility and desir­ ability of home care for children dying o f cancer. The study was based on two premises: that after the cessation o f cure-oriented treatment, when death is the inevitable outcome, it is desirable for children to return to their homes, and that it can be feasible for a child’s family to provide the necessary comfort-oriented care with the assistance o f a home-care nurse and with a physician serving as a consultant. In order to explore the feasibility o f this home care, the first priority was to provide and refine a model o f home-care service for dying children that could eventually be delivered through ex­ isting community services. The findings on the first phase, the provision and coordination o f home care, are reported in this article. Preliminary information on this phase has been published (Martinson et al., 1978a; 1978b). A preliminary report on the second phase, the transition o f home-care services to the community, can be found in Moldow and Martinson (1980). M E TH O D S Procedure The primary goal o f our model was the provision o f comfort to the dying child at home including, if desired, actual death at home. We postulated that the comfort-care measures needed would be

100

SUFFERING

within the expertise and training of a home-care nurse, who could be the health professional responsible for coordinating care. We also postulated that the parents could function as the primary caregivers and decision-makers. These roles are often difficult, if not impossi­ ble to maintain when a child is in the hospital, but are entirely appro­ priate when the goal is comfort-care o f the child. The parents were thus considered the primary caregivers, the nurse coordinated the home care, and the physician acted as a consultant to the nurse and family. Coordination of the home nursing service components o f this study was located at a university school o f nursing, although it re­ mained administratively separate from existing nursing services. After a child was referred to the project by a physician, a nurse from the home-care project staff contacted the child’s parents. The nurse explained the project to the parents and secured their informed con­ sent. If the initial referral was made by another health professional, such as a pediatric oncology nurse, the patient’s physician was con­ tacted before any communication was undertaken with the parents. Because o f the limited number o f research staff available to pro­ vide home-care services and the geographic distribution o f families, it was necessary to contract for nursing services for most o f the par­ ticipating families. In some instances, home-care nurses were located through family recommendation; in other cases, local com ­ munity health institutions were asked to identify nurses who would be willing to assist families and participate in the study. A back-up nurse was also secured to provide home-care services when a primary nurse was not available. Two project nurses oriented the home-care nurses to the special services they would provide and of­ fered continued consultation. The home-care nursing services provided by the project included the following: (1) each family’s home-care nurse was on call 24 hours a day, seven days a week; (2) the nurse went to the home whenever and as often as the family requested, without questioning the necessity o f the visit; and (3) the nurse was available to help the family in whatever way was deemed necessary, beginning at the time o f the patient’s discharge from the hospital and continuing throughout the home-care period, as well as during and after the child’s death. Attendance at the child’s funeral was desirable and follow-up within the first month to assess the family’s situation was encouraged. If the family appeared to lack adequate internal or com ­ munity support to assist them through the grieving period, the nurse

Ida M. Martinson

101

referred them for additional professional assistance in their com­ munity. In addition to the nursing services, a physician (usually the child’s oncologist) served as a consultant to the family and the nurse, and was available by telephone at all times. The option o f readmission o f the child to the hospital remained open at all times. Subjects Criteria for referral to the home-care project were (1) the patient was 17 years o f age or younger, (2) the patient was dying o f cancer, and (3) no procedures requiring hospitalization were planned at the time o f referral. A total o f 64 children were referred during the phase o f the project reported here. Referrals were received from 23 different physicians from university hospitals and nine other hospi­ tals in the state. The university hospitals were the largest source of referrals, providing 53 percent o f all referrals received. O f the 64 children referred, one experienced a spontaneous re­ mission and was subsequently withdrawn from the project. Three additional children were referred because no further treatment was available for them; however, these children were not appropriate subjects for this study because their prognosis indicated that they could expect months or even years o f life. An additional two children who were expected to be nearing death at the two-year cut­ off time o f the study were referred to existing community home-care agencies. Data Sources Research data was derived from the children’s medical records, forms and records completed by the home-care nurses, question­ naires on personal characteristics completed by both the parents and nurses, notes kept by the nurse coordinators o f the project, and records of interviews with parents, physicians, and nurses after each child’s death. The interviews followed semi-structured formats con­ sisting of predetermined questions with open-ended responses. Parent interviews were conducted in the family home at intervals o f one month, six months, 12 months, and 24 months after the child’s death.

102

SUFFERING

R E SU L T S Duration o f Care O f the 58 children in the project who died, 46 (79 percent) died in their homes, 11 died in the hospital, and one died in an ambulance en route to the hospital. Duration o f home care was defined as beginning after the child’s discharge from the hospital and/or when a home-care nurse was available to provide care, and ending at the death o f the child. Table 1, which shows the duration o f home care for the 58 children in the project, shows wide variability in duration o f home care for both those who died at home and those who died in the hospital. In all, 18 (31 percent) o f the children were in home care for less than one week. Six (50 percent) o f the children who died in the hospital were rehospitalized for one day o r less. The re­ maining six children were rehospitalized from four to 35 days, with a mean of ten days o f hospitalization. Three children had two months or more o f home-care services before returning to the hospital to die. Family Characteristics In an attempt to determine which families would benefit most from home care and which families might not be suited for it, the personal characteristic variables o f the 58 families were analyzed. The ages o f the 58 children were evenly distributed across a range of less than one year through 17 years. The mean age was 9.3 (SD = 5.5) and the median was 9.5. The children had a broad range o f cancer diagnoses, which is consistent with American Cancer Soci­ ety (1978) statistics for the U.S. population. Twenty-four children (41 percent) had leukemia, 12 (21 percent) had central nervous system carcinomas, seven (12 percent) had lymphomas, six (10 per­ cent) had bone tum ors, five (9 percent) had neuroblastoma, and one each had malignant histiocytosis, embryonal cell carcinoma, heptoblastoma, and rhabdomyosarcoma. O f the 58 families, 25 resided in metropolitan areas, 25 in cities and rural areas throughout the rest o f the state, and eight resided in two neighboring states. Four o f the 58 families were single-parent families. The families’ socioeconomic status was computed using the Hollingshead (1975) two-factor index o f social position. Fami­ lies reflected the entire range o f the index, with a concentration in

Table 1 Dura t i o n of H o m e Care (including d a y s of final hospitalización)



151

46 chil d r e n w h o died at hone

I4-Í 12 children w h o died in the hospital

f



1211-

n = 46:

M e d i a n = 2 1 days. M e a n « 39 days. Range ® 1 - 2 5 6 days

12 :

M e d i a n = 13 days. M e a n ** 39 days, Range » 2 - 144 days

1

1 10-f i 9J i 87-

1

6543r 2-

Ip

m l0 0

i

jUl 5

S SL I

Number of Weeks

?

8

10

11

12

>12

104

SUFFERING

the middle to lower classes. O f the 57 families for whom data is known, four families (7 percent) were in Class I (highest), seven (12 percent) in Class II, 17 (30 percent) in Class III, 27 (47 percent) in Class IV , and two families (4 percent) were in Class V (lowest). With the exception o f one American-Indian parent, ail parents were Caucasian. O f the 58 families, 55 indicated a religious prefer­ ence. In 46 families, both parents reported the same religious pref­ erence: Protestant (29 families) and Roman Catholic (17 families). In nine other families, the parents reported different religious pref­ erences. On the basis o f the m other’s stated preference, six o f these were Protestant families and three were Roman Catholic. An additional family characteristic was the number o f children in the family. The mean number o f children was 2.8. The range in­ cluded four families in which the dying child was an only child and one family in which the dying child was one o f 11 children. Examin­ ation o f all these variables indicated no obvious differences between the families whose child died in the home and those whose child died in the hospital or en route to the hospital. Family M embers as Caregivers As stated above, each family provided comfort-care to its dying child with the assistance o f a home-care nurse and physician. Each family—including the child, if the child was old enough—decided on its own plan o f comfort care in consultation with the physician and nurse. A broad range o f comfort-care measures was available at home, including the administration o f intravenous fluids, oxygen, gavage feedings, and medications such as laxatives, corticosteroids, and analgesics. In addition, individual families chose the degree of intensity o f supportive treatment they wished to provide at home. In almost all instances, the families managed the total provision o f this care with minimum physical assistance from the home-care nurse. To do so, they used a wide variety o f hospital furnishings, equip­ ment, and supplies, including such items as hospital beds, suction machines, intravenous equipment, urinary draining equipment, and incontinence pads. In all instances, pain control was o f importance. Analgesics or anti-anxiety medications, either alone o r in combination, were used to treat pain. Table 2 shows that each o f the 58 children received prescription medications, and all but three children received some medication for pain control. Almost half o f the 58 children received

105

Ida M. M artinson Table 2

Number of Children Narcotic analgesics and antianxiety medications

28

48%

Narcotic analgesics

11

19«

Anti-anxiety medications

10

17%

Non-narcotic analgesics and anti­ anxiety medications

3

5%

Non-narcotic analgesics

3

5%

3

5%

58

99%

None Sum

prcscription narcotics and anti-anxiety m edications to control pain. In addition to analgesics, num erous other types o f drugs w ere used for com fort. T hese included corticosteroids, laxatives, anti-em etics, antiseizure m edications, sleep-inducing dru g s, and antacids. N u rse Services Each family received the assistance o f a prim ary nurse and a c o ­ prim ary o r back-up nurse. T he nurses provided a broad range o f services for the fam ilies, such as teaching, health assessm ent, p ro ­ curem ent o f m edical equipm ent and m edications, provision o f phys­ ical care and technical treatm ent (for exam ple, suctioning and cathe­ terization), and em otional counseling. V ariables related to the hom e-care nurses w ere exam ined to d e­ term ine w hether o r not it w as possible to identify a type o f nurse who would function best in hom e care. T he total num ber o f prim ary o r coprim ary nurses w ho provided hom e care w as (coincidentally) 58. O nly nine o f these nurses had repeated involvem ent in the study. T he ages o f the 58 nurses ranged from 23 to 63 years, with a m ean o f 35 .9 years. Seven o f the nurses (12 percent) had m aster’s degrees, 19 (50 percent) had baccalaureate d eg rees, one (2 percent) had an associate d eg ree, 17 (17 percent) had hospital diplom as, three (5 percent) w ere licensed practical nurses, and one (2 percent)

106

SUFFERING

was a baccalaureate nursing student. The 57 nurses who had nursing degrees had a mean o f nine years o f professional experience; 23 (40 percent) had prior public health nursing experience and 27 (47 per­ cent) had prior pediatric experience. For all but tw o nurses, this was the first time they had provided terminal care for a child at home. One important m easure o f the feasibility o f home care was the ability to secure nurses who were willing to provide the services specified by this model and to do so at distances rem ote from the cancer treatm ent center. In every case, a nurse (or supervised nurs­ ing student) agreed to provide the care. W hen one nurse could not com plete the ease she had taken, another nurse was recruited. Table 3 shows the amount o f direct contact by the nurses with the families during the period from referral through the child’s death. Although the nurses spent additional time coordinating and facilitating care (e.g ., conferring with the physicians and arranging for delivery o f equipment and supplies), Table 3 focuses on the number and length o f the actual home visits because these are the items typically used in figuring charges for home care services. Follow-up visits after the death o f the child are often not reim burs­ able and w ere therefore not included in the table. Some nurses made daily home visits. Although som e home visits lasted only about half an hour, others often lasted about two hours. In some instances, especially at the time o f death, visits lasted sever­ al hours and, in one instance, an entire day. N urses and families used the telephone to maintain close contact and therefore often made daily phone calls. Parents rem arked that the nurses’ 24-hour availability, reinforced by their ready accessibility by telephone, was very com forting and provided a sense o f security during the stressful tim e. Emotional support was a major service provided by the nurses. In all contacts with the family, the nurses spent a large part o f their time providing emotional support for the parents. Physician Services Physicians w ere an important component o f this model o f home care, even though they w ere not as actively involved as the nurses. In all cases, the physicians had been involved in referring the children for home care, thus sanctioning the concept o f the child dy­ ing in the home. Physician availability for consultation was very im ­ portant to these fam ilies, who called the physicians, even if they w ere located at distant referral centers, to report on their child’s

107

Ida M. Martinson Table 3

Bil-C-fct- .Cpntfl£.t_ t o - ü9ift£JlCai£- K U I£££_ HOÎlL. ¿8^ £ l l i J sU PP.

Number V i s i t s Per Family

T o t a l Hours Pet fa m ily

H 2D ie-Ü Ä ltfi Median Mean Range

7.5

23.5

11.7

29.9

1 — 110

1 - 305.6

Telephone Calls Median

14.5

Mean

19.8

Hange

0-101

2.4 3.9 0-23.5

health status. T he families and nurses, therefore, used the physi­ cians as consultants to answ er medical questions, to make medical assessm ents based on the parents’ and/or nurses’ descriptions o f the status o f the dying child, and to recom mend treatm ent such as ad­ justm ents o f medication and transfusions o f blood products. Al­ though the vast m ajority o f all contacts with the physicians were made by telephone, 22 children w ere examined at an outpatient clinic or doctor’s office. The num ber o f such visits for those 22 chil­ dren ranged from one to 19; the median was 1.5, the mean 4.0. Table 4 shows that som e physicians also made home visits. Fourteen children w ere seen at home by their physicians and one family received 12 weekly visits from a psychiatrist. O ther health professionals also made home visits. Such visits w ere not an integral part o f our model and w ere therefore not exten­ sively used. Four families w ere visited by a laboratory technician, two families w ere visited by an occupational/recreational therapist, two families w ere served by a home health aide, and one family each was visited by an x-ray technician, a chiropractor, and a hom e­ m aker. Most o f these health professionals visited only once per fam­ ily. The exceptions were a family who received 43 home health aide visits and another family who received 16 hom em aker visits.

SUFFERING

108

Table 4

Number of Visits 0

Number of Tamili« 44*

76»

1

9**

2

1

2%

4

2

3%

7

1

2%

1

2%

17***

16«

Includes 34 home and 10 hospital deaths Includes 7 home and 2 hospital deaths *** Includes 12 psychiatrists visits

Feasibility a n d Desirability The areas that were explored to determ ine the feasibility o f this hom e-care model w ere also often used to exam ine its desirability: (1) the ability o f families to provide high-quality com fort care for a terminally ill child at home until the child died, and the fam ilies’ willingness, if they had to choose again, to provide that care; (2) the availability o f nurses and physicians who would agree to assist the families in providing the care; and (3) the ability o f professional staff to obtain adequate medications, medical equipm ent, and sup­ plies. Family involvement. As previously stated, 46 (79 percent) o f the 58 families studied kept their child at home through the time o f the child’s death. From the parents’ vantage point, this seems to suggest feasibility. In all instances, the home-care nurses felt that the families provided high-quality care at home. At 12 months after their child’s death, parents were asked w hether o r not, if they had to choose over again, they would choose

109

Ida M. Martinson

home care for their child. Among those whose child died at home, only two (2.7 percent) o f the 73 parents who responded expressed some uncertainty about choosing home care again. The 12 families who returned their child to the hospital to die may have found home care o r death at home undesirable. Because it was necessary to identify the factors that may have led to their child’s re­ admission, we re-examined each case, looking at the characteristics o f the families and the process o f hom e-care delivery for them. T heir variables w ere com pared to those o f the 46 families whose child died at hom e. The reasons given by the families for the child’s final admission to the hospital w ere also examined. The 12 children who died in the hospital after som e home-care services did not obviously differ from the 46 who died at home when com pared on the basis o f sex, age, socioeconomic status, ru ral/u r­ ban residence, religious preference, race, num ber o f siblings, birth order, num ber o f parents present in the hom e, diagnosis, o r duration o f hom e care. The place o f death was also not obviously influenced by when, in the process o f this program ’s evolution, the family entered the hom e-care program . T here w ere differences when the process o f delivery o f home care services was evaluated. Table 5 shows the rate o f nursing visits per day, omitting those days when the child was in the hospital and therefore did not receive home visits. The 46 children who died at

Table 5

Rate for 46 Children Who Died at Home

Pate for 12 Children who Died in Hospital

UCffiS- V i f i i i S Median Rate Range

Median Rate Range

.42

.21

.06 - 3.0

.03 - .67

.61 0 - 3.67

.50 .07 - 3.0

110

SUFFERING

home received approximately twice as high a rate o f home visits and a slightly higher rate o f telephone calls than did the children who died in the hospital. There were also differences in medication usage. Children who died at home typically received a greater total number o f medica­ tions than did those who died in the hospital. In addition, 80 percent o f the children who died at home received narcotic analgesics, whereas only 42 percent o f the children who died in the hospital received narcotic analgesics. O f the children who died at home, 76 percent received anti-anxiety medications, while only 50 percent of the children who died in the hospital received these drugs. In addition, there were differences in the number o f items and the kinds o f medical equipment, supplies, and furnishings used. A larger percentage o f children who died in the home received various furnishings, equipment, and supplies such as bedpans, commodes, hospital beds, antipressure devices, suction machines, and dressings as compared to those who died in the hospital. Children who died at home were also twice as likely as children who died in the hospital to visit their physician’s office or clinic. However, there was no ob­ vious difference in the frequency o f home visits by physicians or other professionals to children who died at home and those who died in the hospital. In summary, it appears that multiple factors influenced the return of 12 children to the hospital. Insufficient nursing services were cited in only two cases, in spite o f the differences in the amount o f home-care services received by children who died at home and those who did not die at home. Health professional involvement. Another indication o f the feasi­ bility of this care model is the fact that nurses were always recruited to assist these families. In addition, physicians indicated their sup­ port both by referring patients and by remaining available to the families and nurses during the home-care period. A further measure o f feasibility was the willingness o f these nurses and physicians to provide home-care services in the future. O f 44 nurses who were asked “ Would you be willing to be a homecare nurse again?” 33 (63.5 percent) said “ Yes” and none said “ N o .” O f 19 (36.5 percent) nurses who said “ Yes, but . . . ” five said they might be willing to be home-care nurses in the future but that they “ needed time to recover,” three said they would want to get to know the family before providing home-care services, two said it would depend on the situation, and two said “ family needs

Ida M. Martinson

III

perm itting.” Other nurses gave the following explanations (each noted once): moving out o f the area; am pregnant; new employment precludes involvement; changes in program are needed; would need more support and more information; would serve only as a back-up nurse; would serve only if provided with a beeper and as a back-up nurse. O f the 23 physicians who referred families to the study, 19 were interviewed. O f the referring physicians, 10 referred one child and 13 referred two or more. An additional 20 physicians who provided home-care services but did not refer children to the study were also interviewed. When interviewed, all o f the physicians said they would use home-care services again. Their comments included statements such as ‘‘Home care is a tremendously positive thing,” “ It can be a meaningful experience for the fam ily,” and “ When the final end comes, the last days should not be spent in the hospital.” A further indication o f feasibility was that the home-care nurses or project staff were able to obtain medical equipment, supplies, and medications in sufficient quantities and at the time they were needed, although not always without difficulty.

D ISC U SSIO N The material reported here represents the first phase o f a study with the major purposes o f providing and coordinating the nursing and other services necessary to support the home care o f children dying o f cancer. The research component focused on measuring the feasibility and desirability o f the services provided. In addition, dur­ ing this phase, research efforts provided concurrent data regarding areas o f effectiveness and efficiency in the provision o f home care. As a result, the home-care model on which the project is based has evolved in response to ongoing feedback provided during the study. In more established modes o f care, it is feasible to concentrate research primarily on the outcomes o f the care. However, in proj­ ects such as ours, in which the objective is to develop a mode o f care, it is necessary first to consider the evolution o f the process of care and then to concentrate on outcomes. Consequently, the research reported was not based on a clinical trial design with cased randomly assigned to groups. Despite these methodological realities, the research has provided valuable information on the process o f home care and its impact on

112

SUFFERING

families, nurses, and other health care professionals. A model de­ veloped that provided home care to 58 families and that enabled 46 children to die at home, to the satisfaction o f their families both at the time of death and two years later. The research also suggests that in many ways this home care model is both feasible and desirable. The study has shown that physicians will refer patients, that children and parents will agree to participate, and that home-care nurses can be recruited. In addition, equipment, supplies, and medications can be secured as needed. No clear criteria have emerged that would rule out this home care alternative for any children dying of cancer. One child who devel­ oped continuous seizures was an appropriate candidate for rehospi­ talization, although seizures per se do not preclude a child from receiving home-care services. One child who developed sudden pain was rehospitalized although, for other children, pain was ade­ quately controlled at home. Despite the exhaustion and anxiety that many parents reported, they desired and managed to keep their chil­ dren at home. In general, the home-care alternative was feasible for children who had a wide variety o f special needs.

IM PLICATIONS FOR NURSING This study has demonstrated that a home-care program that is comfort-oriented can be coordinated and directed by nurses rather than physicians. Although the physicians were used to change treat­ ments (e.g., to order different medications), the nurses made the assessment of patients and frequently recommended the treatment changes. We believe this indicates that similar programs, also directed by nurses, could be developed for children dying from diseases other than cancer as welt as for adults dying from a variety of diseases. Numerous practical implications have been identified. Because approximately one-third o f the children died within a week of admission to home care, home care services should be initiated on either the day of discharge or the first day thereafter. This would afford the nurse and family the time to establish a relationship and to be adequately prepared for the child’s care and death at home, if the family so chooses. The extremely high incidence of the use of medi­ cations for pain control for patients in this study is consistent with that reported in the hospice literature (Lamerton, 1974; Twycross, 1978; Lack, 1978). This indicates that nurses caring for either dying

Ida M. Martinson

113

children or adults should be prepared to obtain pain medications on very short notice, recom m end that hom e-care nurses obtain orders for analgesic medications upon the patient’s admission to home care, and that they have available the syringes and supplies needed to adm inister the medication. Because this study identified no particular “ family type” that was either “ not appropriate” o r “ most appropriate” for home care, health professionals should use criteria other than family character­ istics in deciding who should be referred for home care. Sim ilarly, because little difference was found in the perform ance o f nurses on the basis o f their education o r experience, other factors should be considered in choosing hom e-care nurses. The 24-hour, seven-day-a-week on-call status was predicted to be a disadvantage o f this m odel, but so few nurses have had repeated long-term involvement in the study that we are unable to make a def­ initive statement on this point. Parents’ responses suggest, how ever, that this on-call availability o f the nurses was a m ajor factor in their positive reaction to home care. Finally, although we are unable to state with certainty that the differences observed between nursing services provided to families whose child died at home and to those whose child died in the hospital w ere a factor in hospitalization, that possibility clearly exists. W e believe that home care should be available as an alternative for families with dying children and that a nurse who takes on that care should be supportive o f the fam ily’s wishes to have the child at home. W orking together, they can make the final days o f the child’s life as com fortable as possible. R EFER EN C ES American Canccr Society. 1978. C A —A C a n cer J o u rn a l f o r C linicians 18(1): 18-22. Ayer, A. H. 1978. " Is Partnership with Parents Really Possible?" M C N : V ie A m erica n J o u rn a l o f M a tern a l C h ild N u rsin g 3: 107-110. Bluebond-Langner, M. 1978. V ie P riva te W orlds o f D y in g C hildren. Princeton: Princeton University Press. Basson, W . M . 1976. “ Management o f the Dying C h ild ." J o u r n a l o f C lin ica l C h ild P sy ­ c h ology 3: 25-27. Freeman, R. B. 1963. P u b lic H ea lth N u rsin g P ra ctice. Philadelphia: W. B. Saunders Co. Friedman, G. R. 1977. "A Comprehensive Care Center for C hildren.” H ealth aiul S o cia l W ork I: 158-168. G reen, M. 1967. "C are o f the Dying C h ild ." P ed ia trics 40: 492-497. Hackley, J. A ., W. C . Fan, ana T. M. M clntar. 1978. "Tucson (I9 7 7 )-H illh av en H ospice." D eath E du ca tio n 2: 63-82. Hardgovc, C . B. and R. Kcrmoian. 1978. "Parent-Including Pediatric U n its." A m erican J o u rn a l o f P u b lic H ealth 68: 847-850. Hollingshead, A. B. 1957. V ie T w o-F actor h u lex o f S o c ia l P o sitio n . Unpublished.

¡14

SUFFERING

Jackson, P. B. 1978. "Child Care in ihe Hospital: A Parent/Staff Partnership.** MCN: Vie American Journal o f Maternal Child Nursing 3: 104-107. Korsch, B. M. 1978. ‘‘issues in Humanizing Care for Children.” American Journal o f Public Health 68: 831-832. Knudson, A. F. and J. M. Natterson. 1960. “ Participation of Parents in the Hospital Care of Fatally 111 Children.” Pediatrics 26: 482-490. Lack, S. A. and R. W. Buckingham. 1978. First American Hospice: Three Years o f Home Care. New Haven, CT: Hospice, Inc. Lamcrs, W., Jr. 1978. “ Marin County (1976) Development of Hospice of Marin.’* Death Education 2: 43-62. Lamcrton, R. 1974. ‘‘Opiate Delusion.” World Medicine 44-45. Martinson,!. M., G. D. Armstrong, D. P. Gcis, M. A. Anglim, E. Gronscth, H. Maclnnis, J. H. Kersey, and M. E. Nesbit. 1978. “ Home Care for Children Dying of Cancer.** Pediatrics 57: 106-113. Moldow, D. G. and I. M. Martinson. 1980. “ from Research to Reality: Home Care for the Dying Child.” MCN: Vie American Journal o f Maternal Child Nursing 5: 159-166. Mount, B. M. 1976. Palliative Care Service October 1976 Report. Montreal: Royal Victoria Hospital. Sauer, S. N. 1976. “ The Hospital Setting for the Child with Cancer.” In I. M. Martinson, ed., Home Care for the Dying Child: Professional and Family Perspectives. New York: Appleton-Century-Crofts. Saunders, C. 1975. St. Christopher's Hospice: Annual Report 1974-75. London: St. Christopher’s Hospice. Spinctta, J. J., D. Rigler, and M. Karon. 1973. “ Anxiety in the Dying Child.” Pediatrics 52 : 841-845. Twycross, R. G. 1978. “ The Assessment of Pain in Advanced Cancer.” Journal o f Medical Ethics 4: 112-116. Wacchter, E. H. 1971. “ Children's Awareness of Fatal Illness.“ American Journal o f Nursing 71: 1168-1172.

Euthanasia and Moral Stress Bernard E. Rollin

For as long as human beings have thought about their bodies, it has been recognized that exposure to noxious physical, mental, and emotional experiences has negative effects on health. There exist, for example, classic literary descriptions o f the way in which per­ sonal tragedy can “ age” individuals and destroy their physical well­ being. It has only been in the last half-century, however, that an at­ tempt has been made to deal with this phenomenon scientifically. The result has been a bewildering and rapidly increasing literature dealing with “ stress” in humans and animals. Although the literature is vast and exhaustive, it is extremely dif­ ficult to pin down precisely what is meant by stress. The term is sometimes applied to environmental situations (cold o r heat stress), sometimes to psychological situations (explicitly in humans and im­ plicitly in animals)—e .g ., emotional stress, separation stress, sometimes to the effect o f those situations on the physiology o f the person or animals, and sometimes to a combination o f all the above. Very often, stress is discussed from a physiological point o f view solely in terms o f what Hans Selye (1978), in his pioneering work, called the General Adaptation Syndrome (GAS). This syndrome in­ volves activation of the pituitary-adrenal axis (i.e., the interrelations between ACTH and glucocorticoids) to deal with long-term stress and activation o f the sympathicoadrenal axis (i.e., mechanisms mediated by the catecholamines, epinephine and norepinephrine, to deal with “ fight or flight” in short-term stress situations. Because of the influence of Selye’s work and the tendency o f researchers to look primarily at the mechanisms he delineated, there has sometimes been a tendency to define stress in terms o f those mechanisms. Doing so is problematic, for two reasons. First, some situations that activate the axes, such as eating, are not what we would normally call stressful; second, various other bodily systems, Bernard E. Rollin, Ph.D., Professor, Department o f Philosophy and Department of Physiology and Biophysics, Colorado State University, Fort Collins, CO 80523.

116

SUFFERING

such as the reproductive and digestive systems, are directly affected by the existence o f stressful conditions. The definition o f stress in the scientific literature is highly vague and obscure, and the entire concept is desperately in need o f conceptual clarification. Much of the use o f the concept relies covertly on common-sense notions o f what is “ stressful” or what makes a person feel physically, mental­ ly, or emotionally uncomfortable. Despite the fact that much o f re­ cent scientific literature has, through a misguided obsession with “ objectivity,” attempted to speak o f stress only in terms o f objec­ tive, observable physiological effects in man and animals, I believe that there is an irreducible psychological component o f the concept, which gives it its intrinsic plausibility and which is implicitly appealed to by scientists when it is applied to animals. For our purposes, it is not necessary to resolve this conceptual muddle. It suffices to point out that in humans and animals, it has now been documented that what common sense calls stressful condi­ tions can have profound physiological effects. All workers in the laboratory animal field know (or should know) that failure to control stress can lead to profound skewing o f metabolic and physiological variables, and can put all forms o f animal research into jeopardy. It has been pointed out that virtually any stimulators can be a source of stress to the laboratory rat, and it is well known that heat, cold, noise, crowding, light, darkness, temperature, air quality, infec­ tion, restraint, trauma, fear, surprise, disease, and a host o f other variables can be sources o f stress to an animal (Isaac, 1979). Recent work has indicated just to what a profound extent anim als’ physio­ logy and behavior can be affected by variables that are usually not even acknowledged—walking into an animal room, petting the animal, the personality o f the animal technician, and so forth. The results of G artner et al. (1980) are especially dramatic because, if taken seriously, they put into question the value o f much biomedical research. They show that merely moving a rat in its cage is enough to create a blood plasma profile indicative o f microcirculatory shock reaction. Increasing attention is also being paid to the effect stress can have on behavior, especially among farm animals. Behavioral pathologies under stress have been described for a wide variety o f farm, zoo, and laboratory animals. In any event, it has become increasingly clear that stress can have incalculably pernicious effects on human health. As mentioned earlier, there is virtually no aspect o f the human body that cannot be deleteriously affected, directly or indirectly, by prolonged stress.

Bernard E. Rollin

117

Cardiovascular health, blood pressure, susceptibility to infection, susceptibility to cancer, reproductive ability, gastrointestinal activi­ ty, ulcers, post-surgical or other wound recovery, migraine, headaches, colitis, irritable bowel syndrome, skin diseases, intellec­ tual abilities, emotional states, nervous and mental diseases, kidney diseases, arthritis, allergies, asthma, alcohol, and drug abuse are all directly tied to stress factors. In addition, a person’s exposure to stress obviously can wreak havoc in one’s family life, sex life, career, social relations, self-image, life satisfaction, productivity, and so on. In short, no area o f one’s life is untouched by the effects o f stress. As the extraordinary effects o f stress have become better known, society has paid more and more attention to the sources o f stress and to controlling its destructive consequences. High stress occupations, such as test pilot and corporate executive, have been recognized, and people whose personalities are likely to lead them to court stress (e.g., type A) have been defined, and suggestions and alterations have been made to deal with these problems. For example, an at­ tempt is made to reduce stress for those in high-stress jobs by pro­ viding them with a great deal o f free time. Similarly, corporations have become increasingly conscious o f high-stress positions in their organizations, and have made workshops and exercise rooms available to their personnel in an attempt to mitigate these stresses. Furtherm ore, techniques o f stress management have been devel­ oped. These include meditation, breathing techniques, yoga, exer­ cise, imaging, and biofeedback. Unquestionably, these techniques are o f value for many people in a variety o f stressful occupations, whether the stresses are physical or psychological. W hether one’s stress comes from facing physical danger, such as test pilots do, or whether it comes from psychological pressure like that o f trial lawyers, surgeons, or columnists who must meet deadlines, there is little doubt that these simple techniques can be invaluable for teaching people to relax. This is especially true when the source o f stress is o f a short-term nature, like that which occurs when one is about to take a test. In this regard, it is interesting that the highest catecholamine levels ever measured in humans occurred in graduate students taking doctoral exams (Best, personal communication). Very likely some of these techniques may also be helpful to those whose jobs present a never-ending series o f stressful crises. There is, however, another source o f stress, or kind o f stress that has been very nearly ignored in the literature. This sort o f stress,

118

SUFFERING

which differs from the stresses discussed so far, is encountered by those whose jobs require that they kill animals for reasons other than the alleviation o f intractable pain and suffering; i.e ., for reasons that are not to the direct benefit o f the animal. I refer to this as moral stress. The groups most obviously susceptible to this sort o f stress are veterinarians, humane society w orkers, laboratory animal veter­ inarians, and laboratory technicians. In my own experience, I have heard this form o f stress described at length by members o f each o f these groups. For veterinarians in pet practice, the demand that they kill healthy animals for the convenience o f their owners is a constant source o f stress. No veterinarian in small-animal practice can escape this situ­ ation. As I have discussed elsewhere (Rollin, 1981), people want animals killed for the most appalling reasons: they have no use for a litter o f puppies and only wanted their children to witness the “ miracle o f birth” ; they have undergone psychoanalysis and are no longer “ poodle persons” but “ Doberman persons” ; they are mov­ ing and don’t want the difficulty o f finding a place that takes pets; they, are going on vacation and don’t wish to spend the kennel fee, since it is cheaper to get a new dog at the pound; the animal no longer matches their color scheme; the dog barks, urinates, chews, chases children, digs up the yard, is too old to jog with them , and so on. In fact, euthanasia is the largest cause o f pet animal death in the United States and the most common reasons for euthanasia are behavioral problems. Veterinarians cannot turn their backs on these cases, for they know that doing so simply pushes them on to a col­ league or to a pound down the street. Even w orse, veterinarians’ failure to engage the issue can lead to abandonment o f the animals or do-it-yourself “ euthanasia,” such as the time-honored gunny-sackoff-the-bridge technique or the release o f animals onto the freeway. Exactly the same problem holds true for workers in humane societies. Among laboratory animal veterinarians and technicians the complaint is again the same, but compounded by the fact that they are often engaged in inflicting pain, disease, and injury on animals, for reasons that do not benefit the animals, before the final act o f killing them. I have had extensive experience with all three groups: I teach at a veterinary college and I lecture to veterinarians all over the world; I have interacted with humane society workers at two conferences on euthanasia (one o f which I helped organize) and at humane societies all across North America; and almost daily I communicate with laboratory animal people across North America

Bernard E. Rollin

119

and Europe. As a result, I have come to certain conclusions regard­ ing this much-neglected problem. In the first place, there is probably no analogy to this sort of stress in people whose jobs require primary concern with humans. Even in the notoriously high-stress profession o f dentistry, although the fact that they are universally feared as inflictors o f pain is a major source o f stress, at least both patient and dentist know that there is good reason for pain, that it is o f ultimate benefit to the patient, and that it is, after all, an unfortunate consequence o f a therapeutic modality. No such recourse exists for those who work with pet or laboratory animals. The death and pain they are required to inflict are not ex­ cused by the fact that they are benefiting the objects o f their minis­ trations. In every case, there is another choice—the particular animal could conceivably live or not be used invasively or, as one vet bitterly told me, could be out chasing butterflies. The stress on these workers is further augmented by a bitter irony: the fact that the people most affected by the stress are those who care most deeply about the creatures they must hurt or kill. If one is totally insensitive, if one does not care deeply about animals, if one is hard or even sadistic, there need be no stress whatever in these occupations. But consider those who become veterinarians because they wanted to make things better for animals (75 to 85 per­ cent o f veterinarians in my experience); those who became shelter workers because they wanted to help animals (over 90 percent); or those who became laboratory animal technicians because they liked to take care of animals (70 percent o f the people in the field). For such people, the stress is unrelenting, unceasing, and unbearable because the source o f stress is constant, overwhelming, and in­ escapable. It arises from a sense o f discord and tension between what one is in fact doing and one’s reason for choosing that field, between what one feels one ought to be and what one feels oneself to be, between ideal and reality. It is for this reason that I call this moral stress. It is obvious to anyone who has experienced this sort o f stress that it is qualitatively different from either physical or mental stresses of other sorts. Whereas other stresses impinge on the periphery of what one does, this sort o f stress strikes at on e’s very core. It is equally obvious that no amount o f stress management techniques can really help deal with this sort o f stress. In actual fact, to apply these techniques to this sort of stress is roughly analogous to using amphetamine for exhaustion—both may help individuals carry on

120

SUFFERING

for brief periods but fail to get at the root of the problem. In either case, failure to get at the root of the problem allows the problem to become progressively worse, so that one may finally drop from ex­ haustion or, analogously, find the stress too great to bear. At that point, one’s useful life in the vocation in question is over. My intuitive grasp of this problem was dramatically confirmed in dealing with animals welfare workers whose primary job is per­ forming euthanasia on dogs and cats. It is known that such people experience enormous stress and suffer many consequences o f it. At a euthanasia conference held at Colorado State University, the wellmeaning but misguided planners had scheduled a session with a psychologist to teach the participants techniques of stress manage­ ment that they could employ when faced with the stresses of their jobs. For example, the psychologist advised them to relax during the actual killing by imagining some pleasant scene, such as a desert island. Needless to say, this suggestion evoked considerable hostili­ ty. Workers remarked that the psychologist clearly didn’t have the slightest notion of what they were experiencing, if he thought that that sort of technique was at ail relevant. (“ It’s like putting a bandaid on a bullet wound,” one lady told me.) In my presentation, I raised serious questions about the relevance of such “ band-aids” to the performance o f euthanasia on healthy animals. As I described it, the source of stress for these people is based, in the final analysis, on their belief that it is wrong to kill healthy animals. Even though the workers could say they were sav­ ing the animals from something worse, that didn’t really help, first because they couldn’t know this for certain, and second because they were still killing healthy dogs and cats that they did not think ought to be killed, but instead should be out doing doglike or catlike things. I also argued that their stress is based on the tragic selfawareness that those who cared most about animals had essentially been “ conned” by society, as one person put it, into doing one of the worst things to animals, taking their lives to clean up soci­ ety’s mess. Everything I said was fervently confirmed by the partic­ ipants. Furthermore, I continued, there is really only one way to deal with this stress, and that is to feel that one is expending every effort to make one’s own job obsolete. In other words, these people had to feel that they were not only society’s hatchet men, but in addition, that they were doing something positive, whether by educating the public, attempting to pass legislation, or taking other action to eradi­

Bernard E. Rollin

121

cate the need for killing healthy animals in the future. Thus, I argued (and again, this was confirmed by the participants’ re­ sponses) that the only way to control the stress o f such a job was to be absolutely clear about why one was doing it, by having a plan to change the society that makes the job necessary, and by doing whatever one could to implement that strategy. Thus, in this case, the response to moral stress is articulation o f one’s moral principles, and articulation o f the manner in which one hopes to realize them. I submit that a similar situation causes moral stress for pet animal veterinarians, laboratory animal veterinarians, and laboratory technicians who were drawn to these fields because they like, care about, and wish to help animals (or even partly for these reasons). The situation is, in fact, much worse for laboratory animal people, not only because they must cause pain as well as death, but because o f increasing attacks on the use o f animals in research. The moral stress is not only internal, but external; with more and more people raising questions about the legitimacy o f the research enterprise, it is difficult not to feel morally insecure about what one does. This is somewhat true o f shelter workers as well. Members o f both groups have told me repeatedly that they hide the nature o f their work from friends and even family, and are often criticized for it by people close to them who know what they do. Such a situation is clearly untenable. It generates not only stress and makes job satisfaction in­ creasingly difficult, but isolates people in this field from one o f the most basic mechanisms for alleviating stress—talking about it to anyone who will listen. In summary, six facts are the major sources o f moral stress on people who must kill healthy animals: 1. These people have been drawn into their work partly by genu­ ine moral concern for animals. (If one has no concern for animals except as tools for human benefit or scientific re­ search, this sort o f stress will not arise.) 2. Laboratory animal veterinarians and technicians are required to inflict pain, disease, and suffering on healthy animals, as well as to kill healthy animals. 3. Except for those that are starving or suffering, animals them­ selves do not benefit from the killing. 4. Society often disapproves o f o r does not support these activi­ ties, even though their justification is often in their benefit to society. Pet owners and society in general prefer to believe

122

SUFFERING

that humane societies are able to find good homes for the vast majority o f animals. 5. People in this field often feel compelled not to discuss their work with “ outsiders.” 6. These workers often feel they must suppress their rage and moral indignation at owners and clients. Taken together, these facts seem formidable. It is not surprising that some people in these fields protect themselves by enclosing themselves in a carapace, by abandoning the moral concern that is the chief source o f the moral conflict that generates their stress; by thinking o f themselves only as “ scientists” or public servants; by shutting off their feelings for animals; o r by convincing themselves that animals don’t suffer or that their suffering doesn’t matter. As protective devices, such moves are quite comprehensible. But do they represent the best answer to dealing with the stress? In my view, there is a way o f dealing with moral stress that is bet­ ter for people in the field, for society, and for animals, even though it is far more difficult. This method requires that one not forget the reasons one was drawn to care for animals but, on the contrary, re­ member them in Plato’s sense o f remembrance—not only recall them, but systematize them into a rational and defensible moral pos­ ition (Rollin, 1983). In my view, all those drawn to pet practice, humane work, o r lab­ oratory animal work either wholly or partly by feelings that the suf­ fering, pain, and lives o f animals matter must, first and foremost, articulate for themselves in rational terms their ideal ethical position regarding the moral status o f animals in society. This ideal is impor­ tant in much the same way that we need ideals for science, ethics, and politics, not as blueprints for instant social change, but as yard­ sticks to tell us where we are deficient. In my work with each o f these groups, I have tried to develop that ethic in terms o f the fundamental rights o f animals. That need not be anyone else’s ethic; for example, some people may simply believe that animals ought not to suffer or die unnecessarily or for trivial reasons. I know from past experience that most people in each of these groups hold some notion like mine, that animals have value in themselves, not just as tools for us, and that aspects o f their nature ought to be protected. However, the point is that these individuals need to have some rational and defensible articulation of their basic feelings o f concern for animals.

Bernard E. Rollin

123

Having articulated to oneself a moral position, workers in this field must then ask themselves whether or not they are doing every­ thing in their power, individually and collectively, to actualize that ethic. Few people in any o f these fields have taken these steps. Until recently, few people in humane work had developed an ethic. Even though most o f them had realized that something is wrong in a socie­ ty that kills 15 to 20 million healthy dogs and cats a year, few had gone beyond the tired old saw o f “ spay and neuter.” However, as progressive humane societies like the one in San Francisco have shown, individuals armed with an ethic can dramatically raise the animal adoption rate and awaken the public to the realities of animal-related problems. One must not resign oneself to doing society’s dirty work: as long as someone will do it, the dirty work will keep coming. It is essential to feel and to know that one is somehow striking at the sources o f the problem, not merely at its symptoms, and working toward a world in which no one must do such a job. Meaningful public education directed at adults, not merely children, and efforts to legalize the rights o f pet animals, perhaps by licensing pet owners, are major steps in the right direc­ tion. There is also much positive work to be done by pet veterinarians. Organized veterinary medicine has tended to sidestep animal welfare issues. A growing number o f veterinary schools (but still a minority) are incorporating ethics courses into their curriculums, and the key question in veterinary ethics is, o f course, the moral status of animals. Ideally, no veterinarian should emerge from vet­ erinary school without having formulated a clear picture o f the value o f animal life and suffering, and o f the hard realities o f such ethical questions as the euthanasia o f healthy animals. Furtherm ore, veter­ inarians who value animals in themselves, as the vast majority o f veterinarians do, must emerge as animal advocates and educators. American veterinary medicine is culpable for its failure to use its Aesculapian authority on behalf o f the welfare o f animals in society; all too often, it has gone with the flow o f social and economic pressure. But as society begins to engage the hard questions o f the moral status o f animals in society—whether these are pets, food ani­ mals, or laboratory animals—veterinarians must inevitably provide leadership in this area. This means that veterinarians must be far more than medical practitioners. They must, for example, be coun­ selors on behavioral problems because, as noted earlier, euthanasia for behavioral problems is the single largest cause o f death among

124

SUFFERING

pet animals. This, in turn, means that behavior must loom large in veterinary curriculums. At the moment, few veterinary schools have required courses on this subject. Veterinary education must adapt to the changing view o f animals in society. Accordingly, cur­ riculums must highlight, not ignore, ethics, behavior, and the com­ plex social dimensions o f veterinary medicine. Individual practice too can be dramatically changed to harmonize with veterinarians’ view o f themselves as animal advocates. Far too few veterinarians take seriously their role in educating clients on behalf o f animals. With the Aesculapian authority they bear as med­ ical professsionals, such a role is natural. Assuming such a role need not mean financial loss. I know veterinarians in California who have clients who do not yet own animals; these clients pay the veteri­ narians to advise them on the selection, training, and assimilation of an animals into the family even before they acquire an animal. Veterinarians must be trained, if possible, to do what good veterinarians have always done intuitively: to plead the cases o f ani­ mals whose owners wish to receive euthanasia for bad reasons, and to seek alternatives for such animals. Veterinary schools would profit greatly from having successful local practitioners as adjunct faculty. Too often, veterinary education is more concerned with teaching about laser surgery or monoclonal antibodies than with de­ veloping techniques for persuading clients. Finally, organized veterinary medicine, beginning at the local level, must work to create social policy in the form o f legislation or ordinances to eleyate the status o f animals, and to make the acquisi­ tion and destruction o f an animal at least as difficult as getting a driver’s license. Initiating rational legislation in this area is in the veterinarian’s self-interest, not merely the anim als’. Not only would such action mitigate moral stress, it would forestall the extreme leg­ islation that can emerge from crisis situations—for example, the legislative banning or severe restriction o f animals after a dramatic dog-bite case, after a crusade against dog feces, or after a zoonotic epidemic. Precisely the same sort o f strategy should be relevant to individu­ als in the laboratory animal field. The situation for these people is more difficult, however, for there is virtually no hope of creating a society in which there will be no need to hurt or kill animals for scientific research. Therefore, the moral stress and the correlative tendency to callousness is very great, although one must never minimize what pet veterinarians must feel when they are casually

Bernard E. Rollin

125

asked to kill animals they may have delivered o r, on some prior oc­ casion, fought to save from disease o r injury. Laboratory animal workers sometimes get to know their animals individually as well, and give them names instead o f numbers. However, when such con­ cern is divorced from a reasoned stance o f animal advocacy, it can increase moral stress when the animals one has cared for so deeply must be hurt or killed. It is doubtless for this sort o f reason that many people choose to leave the field, ironically eliminating from it those who care the most. A better way, a more productive way, it seems to m e, is to stay in the field and try to ensure that the interests o f the animals are served as fully as possible even while the animals are being used. In essence, this too means becoming an animal ad­ vocate and seeking out ways in which things can be made better for animals within the context o f scientific research. We are very far from protecting the interests o f animals in research—witness our use o f animals for multiple surgery and the fact that the overwhelming majority o f research protocols in the U.S. do not employ analgesia for painful procedures on laboratory animals, even when their use would not affect the scientific data. (The use o f anesthetics is, of course, mandated.) This in turn means not apologizing for research or for the status quo, not accepting the official line that all is fine in animal use in this country, but recognizing that there are problems, and trying to fix them. As a prominent laboratory animal veterinarian recently told the American Association for Laboratory Science, our job is to care for animals, not to defend research. Many times, o f course, veteri­ narians and technicians are powerless to effect changes they clearly see as necessary, especially when they are dealing with highpowered, well-funded medical researchers who don’t care about an­ imals. It is for this reason, among others, that I have argued for the laboratory animal veterinary comm unity’s support for legislation: to give laboratory animal workers some power, which they sorely need. There is no conflict between caring about animals and working in research once one is committed to the inevitability o f the invasive use o f animals and has accepted a role as an animal advocate. Those in such a position are all that stand in the way o f animals being treated solely as tools. If research goes on, let it at least go on in a way that does not ride roughshod over the interests o f creatures who cannot defend themselves. Only in this way can moral stress be overcome, transformed from a drain on vitality and well-being to a

126

SUFFERING

creative challenge, and from there to a positive moral force. In at­ tempting to minimize the suffering and unnecessary death o f research animals, laboratory animal workers minimize their own suffering. If research is to continue, as it surely w ill, let it be done by those who care and to whom the suffering and death o f animals is o f profound moment. I submit that w e are living at a critical histori­ cal moment. Never has society been more conscious o f the ethical dimensions o f its treatment o f animals. As a Harvard University study (1982) put it, animal welfare shows every indication o f being the Vietnam o f the 1980s. It is in our hands to ensure that this inter­ national moral stirring is not vainly dissipated, and that its inchoate and largely uninformed emotional energy is channelled in a con­ structive direction for the genuine betterment o f animals, as well as for the health and welfare o f our own bodies, minds, and souls.

REFERENCES Animal Rights Movement in the United Stales (September 1982), prepared by Harvard University's Office o f Government and Community Affairs. Best, J ., personal communication. G artner, D ., D . Buttner, K. D ohler, R. Friedel, J. Lindena, and I. Trautschold. 1980. "Stress Response o f Rats to Handling and Experimental P rocedure." Laboratory Animals 14: 267-274. Isaac, W. 1979. "C auses and Consequences o f Stress in the Rat and M ouse.” American Association for Laboratory Animai Science Seminar on Stress, Atlanta, GA. Rollin, B. 1981 Aninuil Rights and Human Morality, Part IV. Buffalo, NY: Prometheus Books. Rollin, B. 1983. The Teaching of Responsibility, C. W. Hume M emorial Lecture, Potters Bar, H ertfordshire: Universities Federation for Animal W elfare. Selye, H. 1978. The Stress of Life (revised edition). New York: McGraw-Hill. W olfe, T. 1984. American Association for Laboratory Animal Science Seminar on Percep­ tion o f Pain and D istress in Laboratory Animals, Cincinnati, OH.

On the Value of Suffering in the Shadow of Death David Wendell Moller

Dying—Death—Dead. The words are easy to pronounce but diffi­ cult to say. Indeed the thought or articulation of these words often evokes an uncomfortable, uneasy feeling in Americans. Consider the many linguistic devices that are used to circumvent the realities that are associated with the words dying, death, and dead. Euphemisms have become firmly established in everyday discourse and have become incorporated into the professional vocabulary of the medical community. Phrases such as “ she passed away,” “ Mr. Smith left us during the night,” “ there’s nothing more we can d o,” and “ he kicked the bucket” are useful in minimizing the explicit in­ volvement of people in the death of an individual. In addition, vulgar treatment, the theatrical distortion o f dying and death in the entertainment media promotes a popular cultural image of dying and death that is fantasy-life and unreal. The “ objective” reporting of killings, accidents, and body counts by the news media also makes death seem unreal. News headlines such as “ six million Jews were killed in the Nazi death camps,” “ the death toll from the explosion is nearing two thousand,” and “ the holiday death toll has reached forty-five” become statistical abstractions void of any real meaning for the reader. The central theme of this paper is that the myriad forms of death denial, from societal techniques of avoidance to the medicalization of death and the growing mandate that people die-with-dignity, are positively associated with a societal tendency that seeks to alleviate pain and suffering from human life. Furthermore, the attempt to eliminate suffering from humanity has deleterious social and psy­ chological implications for the human condition. David Wendell Moller, Ph.D., Associate Professor, Department of Sociology, Universi­ ty of Indiana, Indianapolis, Indiana (Riley Towers #2,2202, 600 N. Alabama, Indianapolis, IN 46204).

127

128

SUFFERING

THE HUM AN IN SUFFERING Humankind is a rational species. Our consciousness enables us to know that we are in the world and that the world is actually here. Conscious awareness, as the existential philosophers and phenomenologists have observed, is a gift o f our species that significantly distinguishes humanity from its non-human animal counterparts. Yet, this gift is also a burden. The inescapable fact of human con­ sciousness gives birth to a universal human need to understand why one is and why the world is. Beyond the fact of knowing that one is alive and that one and his/her loved ones will die, nothing else can be confirmed. The drive to find the meaning to life is doomed by the inherent unknowability of life’s purpose and meaning. The question of why one is alive and why one will die can never be answered with certainty. Camus illustrates this dilemma o f human existence: Of whom and of what indeed can I say: “ I know that!” This heart within me I can feel, and I can judge that it exists. This world I can touch and I, likewise, judge that it exists. There ends all my knowledge, and the rest is construction. . . . This very heart which is mine forever will remain indefinable to me. Between the certainty I have o f my existence and the con­ tent I try to give to that assurance, the gap will never be filled. Forever I shall be a stranger to myself. (19: 14-15) Camus, and others, argue that humanity is inherently doomed to live in the abyss of absurdity: of needing to know of a “ why?” that is never knowable. Life is absurd and the suffering inherent to ab­ surdity is as much a part of being human as the biological need for water. The myth of Sisyphus as told by Homer clearly makes the point. Sisyphus was condemned by the Greek gods to an eternity of pushing a large rock atop a mountain. When Sisyphus and his rock reach the summit the rock plunges down into the valley of the moun­ tain. Sisyphus must also descend the mountain and begin his journey anew, back towards the peak. As Sisyphus will always find his rock waiting, the burden of humanity is similarly inescapable. As a man­ date of birthright, humanity lives eternally in the shadow of suffer­ ing. However, suffering, while in the nature of the beast, is devalued by modern technical civilization (Szasz, 1957). A utopian ideal of modern living is the nullification of pain, suffering, and death. The

D avid Wendell Moller

129

normative response to human pain, suffering, and death in our pres­ ent and imperfect technological society is to subject these phenome­ na to technical management and control. Although imperfectly ac­ complished, the sedation o f grieving families, the “ narcoticization” o f pain and suffering o f dying people, the prescribing o f valium for emotional disturbance all seek the same goal: the control and nullification o f human suffering. But, if Homer, Camus, and others are correct, the more the technical control o f pain and suffering is perfected, the more an essential dimension o f human life is diminished. TH E D E N IA L O F SU FFERIN G There are many ways in which people transcend pain and suffer­ ing. Alcohol, aspirins, shopping, drugs, and television are readily available as vehicles to disengage suffering and pain from everyday existence. On a sociomedical level, pain and suffering are turned in­ to technical matters requiring technical intervention. Thus, the nor­ mative medical response to pain is to demand more drugs, doctors, and hospitals; all o f which are technological agents o f the body social, and work together to manage and conquer the problem o f pain. The societal and medical attitude that defines pain as being an enemy o f successful living also devalues the experience o f suffer­ ing. Much o f the modern response to suffering, outside o f and within the medical community, secs pain and suffering as being the same and functions to alleviate suffering from life through pain management. If humanity is deprived o f the capacity to suffer then it embarks on a path which narrows the experience of being human. To be alive is to actively engage the world and others with the full complement o f human responses, and this includes suffering. I am concerned that feelings, unlike behavioral activities, cannot be readily com­ partmentalized nor turned on and off. I would argue that the nullifi­ cation of suffering diminishes one’s ability to feel and hence affects the capacity to feel joy as well. To deny suffering is to eliminate meaningfulness of human experience from suffering. Living becomes the pursuit o f endless satisfaction and pleasure, and life without suffering becomes a pseudo-experience—banal, trivial, and most important, unfulfilling. Clearly, there can be purpose, growth, satisfaction, and perhaps even joy in suffering if one suffers for a cause and/or suffers

130

SUFFERING

together with others in the warming fires o f human fellowship. Suf­ fering may enhance not only the lives o f the primary sufferer, but also those who become committed to sharing in the suffering of another person. For example, patience, forbearance, self-control, meekness and perseverance each express a different coloring o f re­ sponses with which pain sensations can be accepted and transformed into the experience o f suffering and endured. Duty, love, ritual, prayer, and compassion are also some o f the means by which people have traditionally borne the burden o f suffering (Ulich, 1976). Aries (1975; 1981), in his studies o f the evolutionary patterns of death and human response to death, documents that the traditional response to dying and death facilitated successful coping with suf­ fering. According to Aries, humanity evolved with the ability to suf­ fer its pain and tribulations, and with the traditional skills to manage its sufferings. Throughout the ages, from the fifth to nineteenth cen­ turies, Aries found the roles o f social ceremony and ritual, fellowship, theodicy, and a culturally meaningful explanation to suf­ fering, dying, and death to be regularly present and cornerstones in helping humanity to deal with its collective fate. Indeed, Aries discusses how the sufferings o f death were tamed and mitigated by traditional responses to dying. Stannard (1977), in his study o f the human and social response to dying and death in American Puritan Culture, also found that fellowship, prayer, and increasingly as years passed, social ceremony functioned to sustain the Puritan in the face of an awesome fear o f death and punishment. This response also promoted the solidarity and community that were salient features o f Puritan living during the seventeenth to nineteenth cen­ turies. However, as both Aries and Stannard observe, the twentieth cen­ tury, with its increasing value o f individualism and scientism, facili­ tated a shift from sociohuman rituals to medical technology in socie­ ty ’s response to suffering and dying. This medicalization o f death, as it has been termed in the sociomedical literature, has promoted a popular Cultural image that death, dying, and suffering are a sign of shame in the American Technological Civilization. This attitude, which evaluates suffering and dying as “ scandalous” has led to an unleashing of the terror and sufferings o f dying and death and even­ tuated in a societal need to develop denial and avoidance mechanisms. The implications o f the obliteration o f suffering are numerous. I ’d like to focus on two consequences for dying patients and on one

D avid Wendell Moller

131

broader implication for society. First is the alienation o f people from their own suffering experiences. In the historical eras dis­ cussed by Stannard and Aries, a person coped with his/her own suf­ ferings, dying, and death. The experience and the particular means o f coping were, o f course, shaped by prevailing societal folkways. However, the more pain is defined and reduced to a clinically objec­ tive phenomenon that can/should be clinically managed, the less in­ volvement an individual has in his/her suffering. In essence, as pain and suffering are turned into clinical entities, clinicians become the dominant actors in the pain experience. In giving one’s suffering to medical caretakers a patient gives up con­ trol o f an important part o f his/herself. This diminishment o f selfmastery, the expropriation o f one’s ability to endure and suffer one’s pain, is inherently dehumanizing and is promoted by broader societal forces that socialize and prepare everyday citizens to de­ pend upon the medical profession for nullification o f pain and suf­ fering. In this sense, the medicalization o f pain, suffering, and dy­ ing eliminates the need for individuals to assume responsibility for their sufferings. In addition, the elimination o f pain and the anesthetizing o f suf­ fering frees family, friends, and community from the responsibility o f sharing in and caring for the suffering o f a dying person. If suf­ fering and dying are tamed by sociohuman forces, those individuals who are connected to a dying person have a societal expectation o f caring placed on them. Thus, these people would be required to make a commitment, i.e ., to take responsibility to meet or not meet their behavioral expectation for caring. In this event, “ I take re­ sponsibility for your suffering” through my commitment to share in and care for you throughout your sufferings. However, if the response to suffering is clinically managed, " I am freed from responsibility for your suffering” as your suffering has been handed over to a medical professional for management and control. As human responsibility for suffering becomes replaced by clinical management, the suffering-dying patient becomes alienated from friends and family as their responsibility for caring has been usurped by the medical managers. And, as people surrounding a dy­ ing person play less and less a role in supporting them through their sufferings, the nurturing o f the qualities o f loyalty, patience, for­ bearance, and courage in those involved with a dying person is dra­ matically lessened. Sharing in the suffering of a dying person, a conjoined participa­

132

SUFFERING

tory union, promotes the active qualities of giving, sacrificing, and protecting. In short, conjoined participatory union in suffering ex­ pands the human capacity for love. The denial of suffering dimin­ ishes human loving. A second major implication of the medicalization of pain is to ex­ acerbate the problem of human suffering for sick and dying patients. In seeking to define human pain as a technical matter, important di­ mensions of humanity’s suffering are overlooked and neglected. A surgeon who is concerned only with the progress of a mastectomy patient’s wound, or an oncologist who focuses her attention exclu­ sively on treatment of physical symptoms, is failing to address the inescapable psychosocial impact of dying, i.e., is failing to address the problem of human suffering in the face o f dying. Thus, the dying person is deprived of a potential source o f support and while the profession of medicine is in control of the pain-killing process, the individual patient and his/her family is left to their own individual resources in facing their sufferings. The failure to provide support through the suffering experiences of a suffering person exacerbates the suffering experience. By non­ involvement in the suffering of a dying person, an important compo­ nent of the terminal patient’s life—the doctor and medical staff—fail to regularly extend themselves to the patient to assist him/her through the suffering. The patient, while being effectively tended to from a biomedical perspective, is isolated by non-involvement of health care personnel in the suffering. In addition to promoting feelings o f isolation in dying patients, non-involvement is seen as a strategy for retaining affective neutral­ ity and objectivity in patient care by the medical professional and often it is perceived not as a neutral stance but as an indicator of cal­ lousness by the dying patient. This perception of callousness, regardless of how callous the physician actually is, or intends to be, has detrimental implications for the psychosocial state of dying pa­ tients. Thus, the expectation that patients suffer discreetly and pri­ vately, and in doing so, not disturb the sensibilities of those around the sufferer, increases the burden of suffering that is borne by the dying patient and perhaps his/her family. A third major implication of the denial of human suffering has broader societal consequences. The historical record of humanity has repeatedly revealed the destructive potentiality of the human species. The enslavement, imprisonment, exploitation, and killing of others have made salient marks on humanity’s autobiography. As

David Wendell Moller

133

much suffering throughout history has been explicitly man-made, the control o f man-induced suffering becomes a collective and in­ dividual human responsibility. If a person is anesthetized to the ex­ perience o f suffering he/she becomes not only oblivious to the suf­ fering of others but unaware/unconcerned/unmindful o f the suffering he/she causes for other people. In this event, one becomes “ morally free” to coexist and remain uninvolved with others who are suffer­ ing and even to promote the suffering o f other people. As recogni­ tion o f pain and its sources helps a person turn away from danger, the acceptance of human suffering serves as a societal check on humanity inflicting suffering on its own kind.

A N O T E O N VICTOR FRAN K L Frankl’s M a n ’s Search fo r Meaning has sold over two million copies. Not only has his work received mass popular accolade, it has been defined as a seminal study in advocating uncringing faith in the meaningfulness o f life, despite the extremities and horrors o f suffering. Frankl is a survivor o f the Nazi concentration camps and provides in this his best known work, an autobiographical sketch of life in Auschwitz and other death camps. He then proceeds to the formulation o f a psychologic school o f thought—logotherapy—the fundamental thrust o f which is that the core motivational force of life is the search for meaning, even in the face of extreme and appar­ ently unendurable circumstances. The point in commenting on Frankl’s work is not to reiterate the brutalities o f the holocaust but to consider Frankl’s argument that life can and should be meaningful despite such brutalities and that special opportunities for growth can emerge from the extremities of human suffering. When moored in an extreme situation o f suffering, Frankl argues that every human being retains his/her psychic freedom. This freedom enables the individual to make personally meaningful choices in the face o f oppressive circumstances. It is this psychic or spiritual freedom that can never be taken away—unless the individu­ al gives it away—that can and does make life purposeful and mean­ ingful in the face o f suffering. In Frankl’s words: When a man finds that it is his destiny to suffer he will have to accept his suffering as his task; his single and unique task. He

134

SUFFERING

will have to acknowledge the fact that even in suffering he is unique in the universe. No one can relieve him of his suffering or suffer in his place. His unique opportunity lies in the way in which he bears his burden. The strength o f the Frankl thesis lies in his recognition of the value of suffering. If there is a meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering, human life cannot be complete. The implication for a dying person lies in advancing the proposition that life continues until the final breath and hence life lit­ erally retains its potential for significance and meaning throughout the dying process. Recognizing the human potential of dying/suffer­ ing people is an important contribution of Frankl’s work and is rele­ vant to the theme I have been advancing throughout this essay. A major weakness of Frankl’s work, however, lies in the unreal­ istic expectations placed upon suffering people and his callous denigration of those who fail to live up to these noble expectations. For example, Frankl discusses how he turned the atrocities of life in the Nazi death camps into spiritual enrichment and enhanced his sense o f psychic awareness. In doing so, he also adopts a super­ cilious attitude to those prisoners who missed "the opportunity for growth and enrichment that life in the camps offered. ’ ’ His language is a classic and disturbing example of blaming-the-victim: The prisoner who had lost his faith in the future—his future—was doomed. With his loss of belief in the future, he also lost his spiritual hold; he let himself decline and became subject to mental and physical decay. (1985:95) The noble wisdom of Frankl opines that the test o f the concentra­ tion camps separated the parasitic vegetators from those who had the ability, ambition, and resources to find spiritual meaning in the hu­ man barbarism promulgated by the Nazis. There is a very disturbing implication to Frankl’s words, one which suggests that the prisoners were conspirators in their own decimation. To adopt such an ap­ proach which blames the prisoners for their lack of inner fortitude is as absurd as indicting Pearl Harbor and President Kennedy for be­ ing in the wrong place. My point in discussing Frankl is not merely to critique his some­ times savage observations but to explore the relevance of his work

David Wendell Moller

135

for my thesis on suffering and dying. First, we find a strong state­ ment in support of the value of human suffering in the shadow of dy­ ing. Despite pain, suffering, and the fears of anticipatory grief, living-while-dying can be a meaningful experience. If suffering and living when suffering become meaningless and hence subject to technical control, life for the dying sufferer has been defined as be­ ing without value. In a very important humanistic sense, to produce the suffering of dying people out of existence, through denial, ne­ glect, or technical management, is to expunge value and meaning from the life of the dying person. Thus, the dying in this framework of denial of suffering become socially and personally dead prior to their biological death. A second point of relevance lies in Frankl’s victim-blaming orien­ tation. As Frankl unjustly places the burden to face the death camps with dignity and fortitude on prisoners, forces in contemporary society have adopted the fallacy of death-with-dignity expectations. The expectation that a patient die-with-dignity has become a way of mitigating behavioral suffering expressions of dying patients, that is to say, death-with-dignity is used as a euphemism for the expecta­ tion that a dying person keep his suffering privately contained. If the patient does not meet the behavioral expectations of suffering with dignity, of having the courage to suffer in ways that do not threaten the status quo of others, he/she will quickly be labelled as a troublesome patient and sedated, sent to a convalescent care facility, or referred for a psychiatric consultation. The essential point to be made is that for those patients who do not find personally meaningful ways to confront their own dying, i.e., if one does not confront dying heroically, one is diminished by a so­ ciomedical label being attached, which defines one as a problem patient. Again, the sociomedical response to troublesome dying pa­ tients blames-the-victim. While I do concur with Frankl that suffer­ ing bravely during one’s dying is squarely facing the nature of the human predicament as it was designed to be and offers opportunities for establishing the meaningfulness of life until the very final mo­ ment, I reject the idea that special and egregious efforts will be/should be normally required to accomplish this task. As long as society does not culturally and institutionally support the value of suffering in general, and for dying people in particular, the ability to accept the humanity in suffering will remain an individual exception rather than a societal pattern. Frank], and those who expect patients to die-with-dignity, neglect this important consideration.

136

SUFFERING

A CONCLUDING S T A T E M E N T In sum, this discussion has not been in praise o f human suffering but rather in support o f humanity’s acceptance o f the inherent (ines­ capable?) role that suffering plays in the shaping o f human life. The norms, values, folkways, social structure, and role expectations o f American society have sought to expel suffering from modern life. To seek to produce suffering out o f existence is to deny and perhaps even mortify the nature o f our species—being. The task o f humanity is not to change the nature o f the human being, but to maximize the potential o f the individual in his/her being human, and this includes an acceptance o f human suffering in the face o f dying.

REFERENCES Aries, P. 1977. W estern A ttitu d es T ow ard D eath. Baltimore: The Johns Hopkins University Press. Aries, P. 198!. The Hour o f Our Death. New York: Alfred Knopf. Camus, A. The M yth o f Sisyphus. New York: Vintage Books, pp. 14-15. Frankl, V. 1985. M a n 's Search fo r M eaning. New York: Washington Square Press. Illicit, I. 1976. M edical N em esis. New York: Pantheon. Szasz, T. 1957. Pain a n d Pleasure. New York: Basic Books.

Suffering and Pain M artin H . Blitzer

Anyone who tries to describe the pain inflicted by a myocardial infarction is limited by the softening effects of time and the inade­ quacies of language. Other facts are that pain is subjective and that patients’ pain thresholds vary, as do the attitudes of patients’ fami­ lies. Add to these facts the realization that there are also differences in metabolism, personality, mentality, and emotionalism, and you get a picture of mixed colors. In short, each person is completely different, perhaps not in anatomy, but in the susceptibility to pain and suffering. Although one thing most of us have in common is fear of the unknown, that fear is also dependent on the personality of the pa­ tient. But pain has a habit of wearing down all but a few to suffering. As a matter of fact, repeated pain induction was used in the initial procedures of brainwashing. Ergo, pain must be controlled if pa­ tients are not to deteriorate and communicate their suffering to their families. Although it has been many years since I experienced it, the pain of a myocardial infarction has never, in my opinion, been adequate­ ly described. Descriptions likening the pain to “ mild indigestion” or ‘‘an elephant tromping upon one’s chest,” are usual, but inac­ curate. Pain, as we know today, cannot be measured accurately; we really have no meters to use. However, if one were to use a subjec­ tive scale of 1 to 10, the pain of myocardial infarction would rate about 80. That number is not used in jest, nor from memory of the pain. When I had the pain, I made a mental note not to forget it. It seemed to be the most excruciating pain I had ever been subjected to. The Good Lord blessed us with selective amnesia, particularly in respect to pain. Some of us retain more vivid memories, but on the whole, the entire aspect of suffering and pain is only real when it exMartin H. Blilzcr, P .D .S ., New York Siale Psyehialric Institute Dentai Service, New York, New York (722 West I68lh Slrccl, NY, NY 10032).

IJ7

138

SUFFERING

ists, not afterwards. For example, most women have severe pains during childbirth. Having given analgesia and anesthesia to women during childbirth, I have been privy to some o f the remarks they have made during contractions. If most women who have given birth were not gifted with this selective amnesia as to the depth of pain, the world might not be as densely populated as it is today. As a patient who had a life-threatening disease, I did indeed have my share o f suffering, both mentally and physically. I cannot tell how much my family felt, but I can relate what I regard as the most significant aspects o f suffering and its relationship to thanatology. We all handle suffering differently, and have varying degrees of success in doing so. After being hospitalized, I was given both Valium and Demerol, not only for the physical pain, but to ease my mental stress. That whole time is a little fuzzy, particularly now, but 1 do remember that I was so “ hopped up” that I could not remember the word “ Valium” and referred to it as “ H avoline,” which is a brand name of a motor oil. 1 still don’t know why I said “ H avoline.” While I was in the hospital, my daughter-in-law sent me a book by John Cheever, which I vaguely remember reading and enjoying. 1 read that book again when I was home and not under any medica­ tion. The result? Two different books. I wish I could remember the book I read and enjoyed in the hospital—I might just have another best-seller. Perhaps the most serious aspects o f pain and suffering occur when one’s life is threatened. During the first few days I was in the coronary care unit, I was in and out o f real consciousness, primarily as a result o f the sedation and analgesics I was being given. One morning, a nurse had me sit up so that she could sponge-bathe me. Chattering as she worked, the nurse told me that she had just re­ turned from her honeymoon. I, o f course, reacted with a brilliant, “ O h?” She talked on about her bliss while I was facing the monitor to which the leads strapped to my chest were connected. While she was working on my neck, I noticed that on the screen the lovely little tracing for each of the leads was slowly diminishing in amplitude, until I noted, with some interest, that all o f the tracings were defi­ nitely flat. My reaction, slowed a bit by medications, was “ Uh, oh! I guess I ’m d ead.” I didn’t know whether I should be hearing ethereal music or feeling intense heat at my heels. Those were my thoughts. I started to worry about whether o r not my family was in good shape, and realized that I was a little late in trying to do

Martin H. Blitzer

139

something about that. But some spark o f intelligence broke through my stupor. Reasoning started: “ If I ’m dead, the nurse won’t hear me if I call h e r.” So I called out, “ B arbra.” There was no answer. For sure, I knew that I was dead. My life did not flash before my eyes. I merely regretted the fact that there were still so many things 1 had left undone. I started to list some o f them while I awaited the in­ evitable. I didn’t know whether or not I should be looking down at myself, as I had often read o f others doing, o r if I should again be waiting for either music o r heat. My confusion stopped when I sud­ denly felt the coolness o f the washcloth on my back. Even in my stupor, I realized that if I were indeed dead, I should not feel that. I called, louder this time, “ B arbra!” “ Y es,” came the answer, ‘i ’m flatlined!” She took a fast look and called into the intercom, “ Code Four!” (their code for an arrest). “ Hold it! How can I be telling you that I ’m flatlined if I am dead? I don’t want the defibrillator paddles!” All o f this was straightened out. In essence, what had happened was that I had consented to use new experimental equipment that was battery powered: the battery, not I, had died. With a new bat­ tery, I was again blipping merrily along. Gone were all the thoughts o f death and how to cope. I remember making an effort to recall key details, and later on I jotted them down. A second incident occurred a short time later. Still under the in­ fluence o f “ Havoline” and Demerol, I was drifting in and out o f never-never land when a nurse came hurrying in and said, “ Not to worry! You have some irregularities. We are going to give you a bolus of lidocaine, and it will all straighten o u t.” That brought me out o f my stupor, to some extent. Now I really regretted not com­ pleting some o f the research I had started. I regretted a host o f other things, including the fact that I was sorry to go, for although some­ times I had been too busy “ to stop and smell the flow ers,” I had had a love affair with life. I don’t have any way o f knowing how much time transpired before the nurse came hustling into my room again with the words, “ Not to worry. The first bolus o f lidocaine didn’t correct the problem. We will give you another bolus now .” She all but ran from the room. This time, instead o f worrying that nothing had happened, my sense of humor took over, perhaps influenced by “ Havoline and Dem erol” : Not to worry! The first bolus had no effect! Not to worry! That seemed hysterically funny to my warped sense of humor, and I started to laugh, really laugh, at the huge joke. When

140

SUFFERING

my laughter reached a crescendo, I suddenly felt a click in my chest. My heart has been fine from that time on. The cardiologists said that the first bolus had taken over; the second one had not been given yet. Still, he thought that the physical act o f laughing may have had some effect on my condition. I have never wanted to debate the issue, but I’m still laughing at most things. On the other hand, I have been present when people whose lives were augmented by religion and great faith were suffering. They were able to take a great amount o f suffering and to control its ef­ fects on their brain, but ultimately all o f them had to give in to in­ tense pain. I have also seen people who cursed everything in sight and broke down in tears asking for a “ shot,” which makes pain and suffering a great equalizer. Despite firm resolve, I too had to ask for pain relief. I attempted to put it off and succeeded to some extent, as most o f us do, by con­ centrating on other thoughts. A gentle April shower was in progress when pain finally came through. I debated all the aspects o f why we run, and shouldn’t, through a gentle April shower. I dwelled on this and similar thoughts, but at last I needed pain control. Make no mistake: pain control is a real necessity. There are no real heroes or heroines. We all suffer. Suffering as we know it, from the patient’s point o f view, is really a combination of mental and physical. O ur professionals realize that, and therefore medicate. One problem, however, is what can be done for patients whose pain does not respond to medication. There are possibilities such as severing nerves, using biofeedback tech­ niques or hypnosis, administering medications that have synergistic actions, and using transcutaneous electrical nerve stimulators. Another possibility is the use o f euphorics, such as heroin, although these drugs are still illegal in the United States. Is their use justified? Because each o f us is different, and the amount o f our suffering varies, we now face m oral, legal, and other difficulties. As a result, patients who have low tolerance for pain or who have reached the limit o f their tolerance after some time are now on the horns o f a di­ lemma, or if you will, a dichotomy. On the one hand, what is most humane for these patients’ suffering cannot be used for, on the other hand, it is illegal. I confess that even when I was a patient I didn’t know where to go from there. I still don’t! Who does know?

Death and Growth: The Problem of Pain Allen P. Fertziger

In 1975, Kubler-Ross published a book with the intriguing title, Death: The Final Stage o f Growth. In that volume, she and a small group of collaborators joined together to express the interesting if somewhat paradoxical idea that death can be intimately involved with human growth and development. Kubler-Ross, describing this fascinating and unlikely connection, has this to say about death and growth: We have tried to show you death as a meaningful, growth-in­ ducing aspect of life, to get you to think about how the study and experience of death can help enrich and give meaning to your existence on this earth, (p. 145) Those who have devoted their energies to work with the dying will undoubtedly quickly grasp the underlying meaning and signifi­ cance of Kubler-Ross’ remarks. Indeed, for many o f us, it is exactly this growth-inducing aspect of death that motivates and sustains us through what is often a deeply challenging and most demanding pro­ fessional endeavor. And yet, it can be frustrating to try to identify specifically what it is in us that grows. How is death related to growth? How can anything closely connected to the end of life be related in any way to human growth and development? Although they are understandable, these questions reveal one of the principal flaws in contemporary thanatological thought: our theory lags woefully behind our practical knowledge. We know that it is possible to face death and the pain it evokes. We know that transcendent growth can arise out of the ashes of death. We even know how to guide grieving human beings through life’s catastroAllcn P. Fertziger, Ph.D., Assistant Professor, Department of Health Education, College of Physical Education, Recreation, and Health, University of Maryland, College Park, Maryland (3609 Taylor Street, Chevy Chase, MD 20815).

141

¡42

SUFFERING

phes and to help them grow in miraculous ways. Nevertheless, when we try to explain these extraordinary human achievements, our theories are able to capture only the barest fragments of the remarkable transcendent experiences. We shall consider this lag between theory and practice first by attempting to identify where and why current theory fails to explain this crucial dimension of our thanatological work. It will be argued that many of these ex­ periences, being of a psychological-spiritual nature, must be placed within a psychological-spiritual theoretical framework in order to close this gap between theory and practice. The current lag will be accounted for by a popular trend to deny the existence of the human spirit and to accept the materialistic logic of modern-day science. It will be suggested that this mind-brain question lies at the center of this conceptual predicament, and that we may now be nearing a time when it will be possible to embrace the mind as a reality unto itself. Thanatology, because of its intimate involvement with the human psyche, must therefore seek to transcend the boundaries of scientific materialism and to create a theoretical foundation that is wholly con­ sistent with our professional experience. Once we can establish where the difficulty lies in our effort to un­ derstand what it is that grows in us when death is successfully en­ countered, we can begin creating a theoretical framework that will enable us to answer these critical questions. A nonmaterialist theory will be proposed that (a) acknowledges the existence of a nonphysi­ cal mind that is intimately connected to the physical brain, but exists as a distinct metaphysical entity unto itself, and (b) explains the con­ nection between death and growth in terms of a sequential process of mental healing that parallels many aspects of physical healing.

PAIN: THE CRUCIAL LINK BETW EEN DEATH AND GROWTH In order to establish the theoretical connection between death and growth, it is first necessary to consider some essential ideas about pain. Anyone who has worked in thanatology will readily under­ stand just how central a role pain and suffering plays in the experi­ ence of anyone who has grown in the face of death. But what is the exact nature of the pain that death makes us experience? Interesting­ ly, in my effort to learn more about pain, I was immediately struck by the similarity between this question and the question of identify­

Allen P. Fertziger

143

ing what it is in us that grows during any successful encounter with death. There is a rich body o f literature on the subject o f pain, but little o f it has any direct application to the type o f pain and suffering evoked by death. A neurophysiologist by training, I was familiar with most current theories o f pain, most o f which are stated in neurophysiological terms. Studying pain from this perspective, I soon learned that virtually all pain theories are predicated on physi­ cal or physiological grounds. Although perfectly valid, this somatogenic view o f pain seemed somewhat irrelevant to the type of psychological pain that is so central to thanatology. But before mov­ ing on to consider more about this psychological pain, let us exam­ ine this somatogenic view o f pain in greater detail. Although Guyton (1983) did not define pain per se, he gave a close interpretation of the widely accepted somatogenic view o f pain: Pain is a protective mechanism for the body; it occurs whenev­ er any tissues are being damaged, and it causes the individual to react to remove the pain stimulus. Even such simple activi­ ties as sitting for a long time on the ischia can cause tissue de­ struction because o f lack o f blood flow to the skin where the skin is compressed by the weight o f the body. When the skin becomes painful as a result o f the ischemia, the person shifts weight unconsciously. A person who has lost the pain sense, such as after spinal cord injury, fails to feel the pain and there­ fore fails to shift weight. This eventually results in ulceration at the areas o f pressure unless special measures are taken to move the person from time to time. (p. 611) As presently understood, all living tissue is supplied with a full complement o f sensory neuronal innervation that continuously reports local tissue conditions to the ever-vigilant brain. It is the brain’s task to integrate all o f this input and make the appropriate decisions that will enable the body to maintain the homeostasis nec­ essary for biological survival. Thus, when the external environment changes, its effect on the body is to bring about a mirror-like change in the body’s internal environment. This happens because the brain has set into motion the internal adjustments needed to restore the vital constancy required for the maintenance o f life. Pain is per­ ceived to function in precisely this way. As the brain processes pain­ ful sensory messages, it immediately learns that tissue has been damaged. Learning this, it can then set off the appropriate repair

144

SUFFERING

processes that will bring about healing and, ultimately, the return of functional integrity. For example, in the event of an injury that causes a considerable amount of bleeding, we would expect to see an initial speeding up of blood clotting or even the restriction of blood flow to the damaged tissue to prevent excessive blood loss. Once the crisis phase that immediately follows an injury has passed, the brain can then attend to the repair o f any damaged tissue by co­ ordinating the following sequence of healing reactions. An increased blood supply can be expected to provide the necessary blood-borne materials to effect tissue repair. The immune system can now be set into motion, both to forestall any infection and to remove any troublesome damaged tissue. A process of adding new tissue can then be expected to continue until a scar has been laid down and full functional operation has beeen established. In this complex process of healing, pain can be thought of as the critical alarm that is essential to life. When pain is nonfunctional, the individual is in a most vulnerable situation, unable to detect damage and thereby adjust in the appropriate way. This protective role of somatogenic pain is clearly demonstrated in Guyton’s exam­ ple of the development of bed sores. Ironically, although the somatogenic view depicts pain as sub­ serving a critical role in organismic survival, this interpretation of pain transforms pain from a hero to a villain immediately after it has sounded its life-saving alarm. At this point, pain ceases to have any intrinsic value and, in fact, becomes the target of a widespread med­ ical practice that actively seeks to eliminate any and all remnants of pain. This abrupt negative transformation of pain’s function has un­ doubtedly been a major factor in shaping our current social attitude of pain aversion that now shows up in a variety of disturbing and un­ desirable ways. Included in this pattern of pain avoidance are such serious problems as our excessive drug consumption and depen­ dency, drug addiction, and even the denial of death, which has been characteristic of this century until the past few years. Aversion to pain is one of the central issues that all thanatologists must ultimately contend with if they are to enable people to grow and learn the lessons death teaches. We can all profit from under­ standing pain in a new light, so that the excessive negativity of the somatogenic view of pain can begin to recede from its counterpro­ ductive proportions. With this in mind, let us now consider a more psychologically oriented view of pain that may be far more useful in our thanatological work.

Allen P. Fertziger

145

In my initial effort to discover the ways in which modern psychol­ ogy has been dealing with the subject o f pain, I was somewhat chagrined to discover that most psychologists have also adopted the somatogenic view o f pain so pervasive in biomedical theory and practice. Although psychologists have obviously explored pain’s many subjective aspects (i.e., ways o f coping, pain thresholds, and pain behaviors), it became clear that psychology has accepted the view that all pain begins in the body. Gatchel and Baum’s An Intro­ duction to Health Psychology (1983), one o f the more articulate texts on the subject o f pain, reveals this deeply entrenched somato­ genic bias: Thus psychological variables play a direct role in the pain ex­ perience. How one reacts to pain sensations is as important as the specific physiological mechanisms involved in transmitting and generating pain experiences. Pain is a complex behavior and not simply a sensory effect, (p. 265) How can this be? Is it possible that psychological pain per se does not exist? As a thanatologist, I found this notion particularly disturb­ ing, knowing that bodily pain was not the dominant form o f pain I had observed in my work. To be sure, a significant amount of somatogenic pain is associated with death and dying (e.g., the physi­ cal pain o f terminal illness), but most o f the pain encountered in our profession is much more mental than physical. The pain o f losing a loved one, o f confronting one’s own inevitable death, o r o f intense loneliness and isolation, are but a few examples o f the psychological pain to which we routinely attend. Because none o f these painful sit­ uations seems to involve any obvious tissue damage, it seemed peculiar that we were still clinging to the somatogenic concept of pain. To resolve this ideological conflict, I was forced to ask why we still embrace the somatogenic view, and whether we can con­ sider a more appropriate psychological alternative? To answer these crucial thanatological questions, it seemed im­ perative to move beyond the limits o f scientific materialism, which restrict us to the inappropriate somatogenic view o f pain. Interest­ ingly, this can be done simply by postulating a psychogenic source o f pain originating in the psyche or the nonphysical mind. (The im­ plications o f attributing a metaphysical basis to mind will be consid­ ered in the following section, where the mind-brain question will be explored in greater detail.) Having made this ideological leap of

146

SUFFERING

faith, we can now begin to sketch out some o f the details this hypothetical schema requires. It is necessary first to divide the hypothetical human mind into a conscious component—i.e ., that which is the basis o f conscious awareness—and an unconscious component—i.e ., that which we do not readily have access to in ordinary conscious experience. A hy­ pothetical boundary must therefore separate consciousness from un­ consciousness. The maintenance o f this boundary can be thought of as the function o f our psychological defenses. That is, when con­ sciousness is threatened by the intrusion o f any unacceptable situa­ tion it cannot handle or understand, our psychological defenses are mobilized to repel this situation from gaining access to conscious awareness (i.e., we are then not aware of this situation). Guaranteed the protection of not having to deal with an unacceptable or poten­ tially painful situation, the conscious mind can then continue to function as is it usually does in handling everyday life. But when death or any other major disaster enters our lives, our psychological defenses are overwhelmed and conscious integrity is completely disrupted. We are forced to confront death, which is such a power­ ful and significant human experience that there is virtually no psychological defense that can resist its force. It is here, at this stage of this hypothetical model, that we encounter the notion o f psychogenic pain. The unwanted situation, by overwhelming our psychological defenses, enters consciousness in spite o f our resis­ tance and thus evokes psychological pain. As this occurs, the con­ scious mind becomes disrupted in much the same way that a physi­ cal injury disturbs the anatomical and functional integrity of organic tissue. Attention is disturbed, concentration is altered, and numer­ ous other aspects of conscious life are compromised. With the mind so greatly disrupted, life becomes extremely difficult. While we ex­ perience this psychological pain we are distressed, discomforted, and will continue to be so until the conscious mind can be healed. This, then, is the process underlying psychogenic pain. This mind’s response to distress can be thought o f as being per­ fectly analogous to the body’s somatogenic reaction to pain when tissue is damaged. Disordered by its psychological assailant, the mind will automatically seek to heal itself and restore functional conscious integrity in much the same way as the body does when it is injured. When this process o f healing is complete and conscious integrity is once again intact, the healed mind is even more whole than it was when it was first injured. It can now accept or receive

Allen P. Fertziger

147

this same situational assault without being devastated as it was earlier. It has learned how to accept the unacceptable. Its ability to adapt is now greater than it was before its initial injury and disrup­ tion. We can think of this hypothetical sequence o f healing reac­ tions, which begin with pain and conscious disruption and end with healing acceptance, as the psychological basis o f the familiar pattern of grief. Paralleling the acquisition of physiological immunity, the mental work of this psychological process can be regarded as con­ ferring psychological immunity on the mind, which is now able to meet life more fully. In short, this psychological healing process can be thought of as a growth process whereby consciousness expands and awareness grows, so that we are now able to accept the pre­ viously unacceptable situations of life.

THE M ETAPHYSICS OF MIND If we are to postulate a psychogenic process of pain we must, of course, postulate the existence of the mind. We must argue that the mind is metaphysically real. To accomplish this, let us consider the crucial mind-brain issue. As a research neurophysiologist for over a decade, I did not find the so-called mind-brain problem to be a prob­ lem to me. Like most of my colleagues, I conducted neurophysiological experiments within the context of the tacit assumption that mind and brain are one and the same. I never so much as gave a thought to the possibility that mind and brain may not be the same. Indeed, it came as a shock to learn that this view of the mind-brain question is predicated on an untestabie presupposition that is consis­ tent with the materialistic ideological orientation o f modern science. Contrary to what I had thought, this question is intrinsically philosophical in nature, and the scientific approach to it is only one way of viewing the problem. It is indeed strange that an idea, once accepted, can become so deeply ingrained that it attains the status of dogma, and then can never be challenged. Yet this is exactly what seems to have occurred throughout much of the biomedical scien­ tific community. The mind per se has been removed from the list of items science has adjudged to be real. Ironically, this tendency to deny mind in favor of brain has even pervaded modern psychology, despite the fact that the very word “ psyche” refers to the mind. Although there are obviously many psychologists and psychiatrists who freely acknowledge the reality

148

SUFFERING

of mind and mental phenomena, there are nonetheless many within the psychological and psychiatric community who are as deeply committed to the mind-brain monism that no mind exists other than as the brain’s neuronal activity. Jung, one of the pioneers of modern psychiatry, made some interesting observations on this critical issue that we in thanatology would do well to consider. It was Jung’s con­ tention that our Western philosophical orientation had followed the peculiar trend of accepting the legitimacy of subjective or mental phenomena, while at the same time denying the existence o f a men­ tal source from which these phenomena might arise. He made these comments in the context o f a comparison to the Eastern philosoph­ ical tradition and the role this tradition had in shaping Eastern psy­ chology. In the psychological commentary Jung provided for W.Y. Evans-Wentz’s translation of the Tibetan Book o f the Great Libera­ tion (1954), we can fnd the following startling observation: The word “ mind,” as used in the East, has the connotation of something metaphysical. Our Western conception of mind has lost this connotation, since the Middle Ages and the word has now come to signify a ‘psychic function’. . . . Our psychol­ ogy is, therefore, a science of mere phenomena without metaphysical implications, (p. xxix) In the past few years, this mind-brain question has been unexpect­ edly reopened from within the scientific community by two promi­ nent neuro-scientists, each of whom published a book arguing that mind and brain are not one, but two. Penfield, a life-long supporter of mind-brain unity, changed his position late in life and published The Mystery o f the Mind (1975) to explain this conversion. Eccles also articulated this dualistic theme that a mind exists along with the physical brain. Eccles expresses this view in The Human Mystery (1979), a series of lectures delivered at Edinburgh University. Both of these books should be read by thanatologists because they provide clear and lucid arguments in favor of the existence of a nonphysical mind. Reducing man to a biochemical machine, as scientific materialism has done, may work when it comes to solving many physiological and biochemical problems, but it may not be the most efficacious philosophical position for those who study death and dying. The time may now be near when our profession will have to ques­ tion its philosophical foundation. It is my contention that we will still

A llen P. F ertziger

149

fail to identify what it is that grows in human beings when they suc­ cessfully encounter death, and that we will do so simply because we refuse to accept that man is as much o f a spiritual being as he is a physical or material being. We cannot identify what grows in a per­ son simply because what is growing is intrinsically spiritual—and we are using materialist constructs to identify and understand this spiritual process. To the best o f my understanding, this is not possi­ ble. W e must begin to construct theoretical formulations that allow us to grasp the spiritual realities and issues that death forces us to consider.

REFERENCES E cclcs, i .C . 1979. The H um an M ystery. N ew Y ork: S pringer International. E vans-W em z, W .Y . 1954. The Tibetan Book o f the G reat Liberation. London: O xford U niversity Press. G alchcl, R .J. and A . Baum . 1983. An Introduction to H ealth Psychology. M enlo Park, C A : A ddison-W esley. G uyton, A .C . 1981. Textbook o f M edical P hysiology, 6th cd. P hiladelphia: W . B. Saunders. KUbler-Ross, E. 1975. D eath. The F inal Stage o f G row th. Englew ood C liffs. NJ: PrenticeHall. P enfield, W . 1975. The M ystery o f the M ind. P rinceton: Princeton U niversity Press.

T h is p a g e intentionally left blank

The Child and Suffering: The Role of the School Robert G. Stevenson

W e adults often try to shield children from suffering in the hope o f giving them a better life. However, our efforts are hampered by the fact that we often do not understand what it is that we are trying to shield young people from. Their suffering often centers on the question o f control. Our schools, ail too frequently, do not allow children to have con­ trol over themselves. We attempt to regulate children’s actions, words, and, at times, even their thoughts and feelings. In doing this, schools are little more than a reflection o f the society at large which gives the young no real voice in their affairs. Young people have shown an inability to deal with loss, both real present loss as well as possible future losses. They demonstrate in­ creasing difficulty in adjusting to change, but their lives are filled with an ever-growing number o f physical, emotional, environmen­ tal, and familial changes. Their bodies are changing. They are mov­ ing into and out o f new relationships. They may find themselves uprooted and dropped into new circumstances as a result o f demands that our mobile society makes on parents. Young people must at­ tempt to deal with parental absence caused by divorce o r death, and with the conflict that often appears between the ideal family they learn about or wish for and the real one in which they live. Finally, our young people suffer from an inability to meet goals set by themselves or others for their lives and future. This sense of “ failure,” whether its cause is real or imaginary, causes suffering that can be clearly seen in the growing number o f self-destructive acts by our young.

R obert G . Stevenson, E d .D ., E d u cato r, River Dell Regional Schools, O rad cll, N ew Jersey (585 H oover A venue, W estw ood, NJ 07675).

152

SUFFERING

REACTIONS OF THE SCHOOLS What has been the reaction of the schools in the face o f this suf­ fering of the young people they seek to help? Our schools have dem­ onstrated an almost childlike inability to control the environment in which they operate. They react to each crisis but repeatedly fail to take the initiative in helping the young to deal with their suffering. Anxiety has been shown to affect the academic performance of students, but our schools seem capable only of reacting to crises. Although the learning process itself may be impaired, few schools have taken positive steps to assist students in developing skills for dealing with anxiety. School guidance departments often become a “ whipping boy,” held to blame for any shortcomings in the effort to guide students. However, counselors find that after they have completed their re­ quired scheduling and college placement functions, they often have less than fifteen minutes per student in which to interview the stu­ dent, identify problems, and attempt possible interventions. This is clearly an impossible task, but the priority in the schools has tradi­ tionally been to achieve status-building college admissions rather than to accomplish the less obvious, but perhaps more important, task o f helping individual students to cope with the demands of life. POSITIVE BEGINNINGS Recently, three programs have made a start at addressing the needs of students through group guidance programs, family living courses, and death education courses. Group guidance programs in middle and high schools give students the opportunity for open shar­ ing of feelings and problems. They can see that they are not alone in their fears and uncertainties while exploring possible ways of coping with them in a non-threatening environment. Family living courses, begun by state mandate in all New Jersey public schools in 1984, teach the “ full life cycle” and are now beginning to address the problems of grief and students’ need to learn to deal with loss. Death education programs have multiplied in secondary and ele­ mentary schools over the last ten years. Although the contents of the programs vary in accordance with the focus of the sponsoring disci­ plines (physical science, social science, language arts, health or guidance), the responses of the students and staffs involved have

Roberl G. Stevenson

153

been overwhelmingly positive. The courses can actually be seen as a form o f life education in that they often show effective behavior for dealing with loss to students who require just such models. The word-of-mouth recommendations for programs such as these are numerous, but there is a conspicuous lack o f documented data to offer to schools that may be considering changing their traditional “ reactive” approach to one o f positive intervention. The experience of sex education should serve as a warning. Programs were put in place because there was an identified need for them , but their antici­ pated effects and the legitimate concerns they aroused among com­ munity members were not sufficiently addressed in advance. The objections of members o f the affected communities were not easily put to rest and still surface from time to time. In addition, there will be a growing need to justify the cost o f any new programs in a time o f budget cuts and the elimination o f courses and teachers from schools. This seems like a “ Catch 2 2 ” situation: we are being asked to prove in advance that the results o f these pro­ gram s will be good, but until we can put the programs in place, there is no way to obtain the data necessary to such proof. In the meantime, for some students, school is a place o f daily suf­ fering. These students dread each new day and seek only to avoid more pain by any means at their command. Programs o f interven­ tion such as those described here may be necessary if some students are to function in the educational system at all. Indeed, such pro­ grams may be a means o f educating these students for survival in the modern world. Given a chance, these new types o f programs could enable our schools to offer the kind o f “ comprehensive” education that theorists have written about for so long. They could m ean a start toward helping our students see that the ways o f dealing with their suffering have been in their hands all along, and toward helping them finally begin to exert some control over their own lives. Critics of these programs will help educators maintain a balanced perspec­ tive. The great potential o f such programs deserves a chance o f ful­ fillment.

T h is p a g e intentionally left blank

Spiritual Support for the Suffering: Clergy Attitudes Toward Bereavement Kenneth J. Doka Michael Jendreski

“ I suppose nothing hurts y o u .” ‘‘Only pain.” Conan, the Destroyer

IN TR O D U C TIO N One o f the dangers in the development and popularization o f death studies is the possibility that we can become so analytical about dying and death that it becomes trivialized. Any effort em ­ phasizing the theme o f suffering brings us a glaring rem inder that as we study dying or bereavement, we are really studying pain. Joseph Bess once wrote a brief two page paper in a volume entitled Death and Bereavement (1969). His article, simply entitled ‘‘G rief Is ,” was a listing o f over 300 descriptors concluding that sentence. His listing included terms such as “ obsessive, agonizing, overwhelm­ ing, and so forth.” It too is a rem inder that suffering is a holistic concept that includes pain on all levels—emotional, social, psycho­ logical, and physical. Certainly pain is evident in bereavement. Nute (1977) once wrote that bereavement was to be feared more than death. His point was that suffering associated with bereavement is both potentially end­ less and repeatable. It is those two characteristics o f grief that can create especially intense pain. If we begin with the assumption that suffering shared is suffering diminished, we can ask where the bereaved seek support. One basic Kenneth J. Doka, P h.D ., Graduate School, College of New Rochelle, New Rochelle, NY 10801. Michael Jendreski, Graduate School, College o f New Rochelle, New Rochelle, NY 10801.

155

¡56

SUFFERING

source of support is clergy. Studies by Carey (1979) and Olick, Weiss, and Parkes (1974) have indicated that clergy are generally perceived as effective sources o f support. Yet their degree of effec­ tiveness will be affected by the degree to which they can empathize. This implies that their recognition and understanding of the symp­ tomatology and nature of grief will be critical components of their ability to respond to the bereaved. This paper then seeks to explore the ways in which clergy can both complicate and alleviate the suffering of the bereaved. In doing so, it draws on another study (Doka and Jendreski, 1985) which in­ vestigated the knowledge and beliefs of over 100 Roman Catholic, Lutheran, and Episcopalian clergy.

RUBBING SALT: DYSFUNCTIONAL RESPONSES While clergy are an important source of support for the bereaved, there is evidence that many clergy are unfamiliar with the nature and symptomatology of grief. Demi and Miles (1983) surveyed, using a delphi methodology, a panel of recognized grief therapists and death educators. This panel identified the duration of normal or typical grief to be about 24-36 months. While the assessment may reflect a certain bias, due to their constant exposure to clients who have more complicated grief, it is supported by studies on normal bereavement (Parkes and Weiss, 1983). A survey of clergy (Doka and Jendreski, 1985), however, indicated that most clergy underestimate the dura­ tion of grief. Thirty percent of those clergy surveyed saw the func­ tional end of grief within the first 6 months. An additional 46 per­ cent perceived that normal grief could last as long as a year. Only 6 Vi percent believed that normal grief could last as long as 30 months. Clergy also underestimated the symptomatology o f grief. In the before mentioned survey (Doka and Jendreski, 1985) clergy were presented with a list of 24 symptoms of grief generally identified as normal in the literature. Fifty percent of clergy identified 13 or less as normal. Clergy were much more likely to accept affective symptoms than behavioral, physical, or cognitive ones. For example, 97 percent of clergy considered sadness and loneliness as normal. About 80 per­ cent viewed guilt as normal. Emotions such as relief were not so readily accepted. Only about half perceived relief as normal. Less than half viewed physical symptoms such as a pit in the stomach or

Kenneth J. Doka and Michael Jendreski

157

shortness o f breath as normal. And only 12 percent considered hallucinatory experiences to be normal. This lack o f knowledge may lead clergy to avoid counseling the bereaved. Glick, W eiss, and Parkes (1974) found that although clergy are perceived and appreciated as religious representatives rarely did they offer solace or counsel. These beliefs about grief may have negative implications when clergy do counsel the bereaved. It may lead to a lack o f empathy that may increase psychological pain. By a failure to validate the symp­ toms or the duration o f grief, clergy may add an additional burden on the bereaved. They may believe that they are not coping well. Their self concept may be diminished. They may suffer increased anxiety about their mental health. In addition, the failure to validate can increase social pain. Clergy may feel that the bereaved person is making unrealistic demands on his limited counseling time. This may consciously o r unconsciously cause the clergyman to distance him self from the bereaved. The clergyman might contribute to a situation in which unrealistic demands are placed upon the bereaved person. For example, in one case, the minister joined with a widower’s friends in encouraging and setting up dates for the young widower soon after the first year. The widower was not ready to engage in social activity and was unable to effectively function in that context. He believed he had disappointed dates and friends. This exacerbated suffering. Finally, the failure to understand the symptomatology o f grief may create additional physical problems. Cassell (1982) asserted that a physician’s failure to understand the nature o f grief can lead to unnecessary interventions that increase suffering. Clergy need to be very cautious in dealing with the physical symptoms o f grief. They should recognize and reassure clients that certain physical symp­ toms are typical in the grief process. They should also encourage counselors to have a complete physical with physicians who are aware o f the recent bereavement so that any underlying conditions may be ruled out. They should support a cautious approach to inter­ ventions, encouraging for example, second opinions. Clergy may not only increase pain when they are insertive to the duration or nature o f grief; pain can also be increased when clergy are unaware or insensitive to the social context o f a death. Recently, we have begun to explore the phenomena o f disenfranchised grief. Disenfranchised grief refers to the grief experienced by persons who have or had a close relationship with the deceased. However,

158

SUFFERING

due to social constraints, they cannot publicly acknowledge or find social support for their grief. Studies of persons involved in nontraditional relationships, such as extramarital affairs, cohabitation, homosexual relationships (Doka, 1984) or divorce (Doka, in pro­ cess) both indicated a variety of factors that tended to complicate their bereavement. In both situations, rituals such as funeral ser­ vices tended to be particularly difficult. Divorcees were often par­ ticularly outraged that their relationships to their ex-spouse were ig­ nored. Non-traditional relationships present even greater problems for here the relationship may be shrouded in secrecy.

ENHANCING EFFECTIVENESS Knowledge of the duration and symptomatology o f grief and sen­ sitivity to past and possible relationships can assist clergy in easing pain. This knowledge and sensitivity can be applied in three specific areas that can enhance the effectiveness of clergy in alleviating the suffering of the bereaved. The first is through preventive preaching. Within each religion and liturgical calendar, there are numerous opportunities to address the issues raised by death and bereavement. At these times, knowledgeable clergy can integrate information on the normalcy, symptomatology and duration o f grief into the sermon. This can have a two-fold effect. First, it can reassure those within the congre­ gation who are bereaved or friends of bereaved. Since death is a taboo subject in our society, very often those who are bereaved may have great anxiety about the nature or duration o f the grief that they are experiencing. This preventive preaching frequently allows per­ sons to openly discuss grief. Second, clergy can prepare people for possible reactions that they may experience as they face grief. A second way in which clergy knowledge and sensitivity can be applied is within the funeral ritual. A funeral service takes place within a number of separate and simultaneous contexts. One context is the theological one. This means that the death of the person, and death in general, needs to be interpreted within the theology of each faith. And the message of comfort of that faith needs to be applied to the particular case. A second context is a personal one. A person has died and that unique life and loss has to be acknowledged. Finally, there are psychological and social contexts. This means that an in­ dividual or individuals are experiencing the pain of grief in a com­

Kenneth J. Doka and Michael Jendreski

159

munity that may neither be aware o f the extent o f their suffering or the ways in which that suffering can be alleviated. Most funerals address the theological context. Many consider the personal one. Few touch upon the psychological and social contexts. Yet, here a sermon can be most effective. H ere clergy can sensitive­ ly discuss the reactions that the bereaved may be experiencing and the ways in which those around them can be most helpful. This is an opportunity to provide support to those whose grief may not be readily recognized. Certainly those with formal ties, such as ex-spouses, may be acknowledged. In addition, a general comment that all those friends and relatives whose lives touched the deceased’s life will feel that loss in their own way, may allow them to recognize their grief and ease their pain. It may even open the door for them to seek further contact and counseling. It is empathic counseling that provides the third area in which the clergy may provide significant support for those suffering bereave­ ment. While it is beyond the scope o f this paper to delineate the prin­ ciples of effective bereavement counseling (W orden, 1982), it is ax­ iomatic to assert that effective counseling begins with a firm knowledge of the process o f bereavement. This reaffirms the critical rule that education about dying and be­ reavement should have both in the seminary and ongoing profes­ sional education programs. The efficacy o f education programs for facilitating interaction with the dying has already been noted for cer­ tain groups o f professionals such as physicians (Dickinson and Pear­ son, 1980). Clergy too would seem to benefit from such a program. In our survey (Doka and Jendreski, 1985), only 50 percent o f clergy had any formal exposure to death education courses or workshops. The most common source o f information still remains Kubler-Ross’ On Death and Dying (1969).

C O N C LU SIO N Frankl, reflecting on a search for meaning that in his case began in a Nazi concentration camp, reminds us that even suffering has a place. If there is a meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part o f life, even as fate and death. Without suffering and death human life cannot

160

SUFFERING

be complete . . . . The way in which a man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity—even under the most dif­ ficult circumstances—to add a deeper meaning to his life. It may remain brave, dignified and unselfish. Or in the bitter fight for self-preservation he may forget his human dignity and become no more than an animal. (1963:106) In those situations and circumstances, those suffering need the support o f others so that they might achieve their potential. But for that support to be significant it must be based in empathy, under­ standing, and knowledge.

REFERENCES B ess, J. 1969. " G r ie f I s .” ln A . K u tsch er, e d ., Death and Bereavement. S pringfield, IL: C h arles C . T h o m as, p p . 202-203. C arey , R . 1979. “ W eath erin g W idow hood: P roblem s and A djustm ent o f the W idow ed D uring th e F irst Y e a r ." Omega 10:163-174. C assell, E. 1982. “ T h e N ature o f S u fferin g and th e G oals o f M ed ic in e .” New England Journal of Medicine 3 06:639-645. D em i, A . and M . M iles. 1983. “ P aram eters o f N orm al G rief: A D elphi S tu d y ." Paper p resen ted to th e Sixth A nnual M eeting o f the Forum fo r D eath Education and C ounseling, O cto b er, C hicago. D ickerson, G . and A . P earson. 1980. " D e a th E ducation and P hysicians' A ttitudes T ow ard D ying P a tie n ts ." Omega 11:167-174. D oka, K .J. 1984. “ B ereft and B ereaved: G rie f in N ontraditional R e latio n sh ip s." P aper presented at Sym posium o n Acute Grief, A p ril, N ew Y ork. D o k a, K .J. “ Loss U pon Loss: T h e Im pact o f D eath A fter D iv o rc e ." In process. D oka, K .J. and M . Jen d resk i. 1985. “ C lergy U nderstanding o f G rie f, B ereavem ent and M o u rn in g ." R eport p rep ared fo r the N ational R esearch and Inform ation C en ter, C h icag o , Illinois. F ran k l, V . 1963. Man's Search for Meaning. N ew Y ork: Pocket B ooks. G lick, I., R. W eiss, and C .M . Parkes. 1974. The First Year o f Bereavement. N ew Y ork: John W iley. K übler-R oss, E. 1969. On Death and Dying. N ew Y ork: M acm illan. N u te, W . 1975. “ T h e C u p o f M ith rid a te s." In J . Bane ct a l., e d s., Death and the Ministry: Pastoral Care o f the Dying and Bereaved. N ew Y ork: S eabury, pp. 83-87. P ark es, C .M . and R . W eiss. 1983. Recovery from Bereavement. N ew Y ork: B asic B ooks. W o rd en , J .W . 1982. Grief Counseling and Grief Therapy. N ew Y ork: Springer.

A Pastoral View of Widowhood Carole Smith Torres

In the book o f Exodus, Moses makes a statement with which I identify. Responding to G od’s call, he says: “ I have never been elo­ quent, neither recently nor in the past, nor since you have spoken to your servant; for I am slow o f speech and slow o f tongue. ” The text continues, “ And the Lord said to him, ‘Who has made m an’s mouth? O r, who makes him dumb or deaf or seeing or blind, is it not I, the Lord? Now then go, and I, even I will be with your mouth, and teach you what you are to say” (Exodus 4:10,11). Verbalizing the transitional moods and feelings that overcome the mind, heart, and body when a loss is experienced sometimes defies our best attempts to explain what has occurred. I have experienced loss on numerous occasions during my life. However, whether speaking as a lay individual or as a chaplain, my questions have con­ sistently been answered and my struggles resolved as a result o f my faith in God and my appeals for His assistance. The Apostle Paul said: “ My message is not in persuasive words o f wisdom, but rather in the demonstration o f G od’s power . . . . ” (I Corinthians). In the spirit o f these words, I feel able to share my own experiences o f loss. I was widowed at the age o f thirty-one. Despite anxious moments o f feeling incapable o f living through the loss, the bereavement and the grief, I did survive. I survived because I loved Ralph and could do no other than be a companion for him as he journeyed toward death and the eternity we believed in. Many memories o f that jo u r­ ney will always remain with me. Because o f its very nature, an extended illness inevitably trans­ lates into diminished opportunities for social contact and meaningful personal interaction. As the illness intensifies and becomes pro­ gressively more debilitating, there exists the possibility that even C arole Sm ith T o rre s, Pastoral A ssociate, D epartm ent o f Pastoral C a re , T h e Presbyterian Hospital in the C ity o f N ew Y ork, New Y ork (164 C helsea A venue, N orth Babylon, NY 11704).

162

SUFFERING

friends and relatives will subtly put distance between themselves and the patient. However, to assert that this is willful and deliberate or involuntary and defensive or even a combination o f these designa­ tions is an over-simplified and lopsided assessment. Medical re ­ searchers have observed that excessive demands and altered person­ ality traits often accompany other affects in the life o f a critically ill patient as the disease progresses. Even long-standing and intimate marriages have been adversely affected by these phenomena. For those who are chronically ill, the loss o f self-esteem, the im ­ pact o f unresolved dependency, the erosion o f autonomy, and the unsettling feelings o f anxiety combine to erode the desire to live. Such patients may attempt to terminate their life by deliberately re­ fusing to submit to life-saving techniques or by failing to comply with procedures designed to prolong or enhance their prospects for survival. Caregiving professionals are trained to view the process o f death and dying objectively with compassion, for sure, but also with a proper mix o f personal detachment. Yet one never walks away from the battlefield o f death undiminished. As death envelops a pa­ tient—whether friend or loved one—the passing leaves a wound and scars that remain sensitive to memory. A friend, who is a medical professional, had lost her husband to cancer. She wrote to me describing what had happened and what is still present in her life: My deepest emotional manifestation o f the loss o f my 34-yearold husband was a nagging, constant emptiness in the pit o f my gut. I thought it would never go away, but found that as time went on, I would find myself caught up in some thought or ac­ tivity. But as soon as I realized who I was, the reality o f the sit­ uation returned, along with that feeling in my stomach. My greatest pain came when I tried to imagine what my children were going through and their loss. When I looked at their sometimes smiling faces, I knew they were working their way through anguish because I was trying to do the same thing. You know the old saying, “ You have to be strong.” My son, most o f all, must have been tormented because his father had always told him that men “ don’t c ry .” My daughter loved her father deeply, and even though almost four years have gone by, I still sense that she is grieving at times. I have rem arried, and happily I might say, but I still have times o f “ sadness.”

Carole Smiih Torres

163

My son has yet to manifest any resolution to the problem. He seems to be functioning and well adjusted, but I do not believe things are clear in his mind. I would like to add, from a spiritual point of view, it seemed that God, in His infinite wisdom, built up my spiritual being just prior to my husband’s being diagnosed. I have what I con­ sider a very personal relationship with my Lord and Savior Jesus Christ, but at times I clutter the communication lines with self. God the Father knows all things and prepares, stengthens and upholds His children, even in the worst times. That is why His children can rejoice, no matter what the situation looks like, because our hope is not in temporal things, but things eternal. The Apostle Paul gave testimony to support these feelings when he said, “ Oh, death where is thy sting and grave where is thy vic­ tory. The sting of death is sin and the strength of sin is the law. But thanks be to God which giveth us the victory through our Lord Jesus Christ’’ (I Corinthians).

REFERENCES Exodus 4:10,11—New American Bible. I Corinthians.

T h is p a g e intentionally left blank

Push Back the Curtain of Darkness T. Earl Yarborough

AH o f us, at some time in our lives, have a curtain o f darkness that surrounds us. Suffering, whether emotional or physical, is very difficult to deal with. Is there any way that we can push back this curtain o f darkness, just a little bit? Most o f us have trouble turning negative things that happen to us into positive things. I know o f no time when we are suffering that we are positive. Only when we begin to work through our suffering, when we begin to deal with its true cause, can we change our atti­ tude to a positive one. Even though the pain does not go away when we achieve a positive attitude, we do begin to feel a little better. Life and reality begin to come back to us. My daughter, Laura Lowe, has committed her life to lending a helping hand to little children. She teaches in the Head Start Pro­ gram in Charlotte, North Carolina. Recently, she told me the following story about a three-year-old girl in her class. The teachers had just taken the boys and girls out on the playground for their play period. As the children scattered around the grounds, they found a big piece o f broken glass. Laura and the other teachers were afraid that someone might get cut, so they told the youngsters to stand back, away from the broken glass. At that moment, a little girl walked up to Laura and said, “ I can pick up the glass and it w on’t hurt m e.” This child has been born without arm s, and she had been fitted with artificial arm s that ended with steel clamps. She walked over and picked up the broken glass and put it in the trash can. At that moment, all o f her classmates and teachers burst into applause. The little girl with the steel arm s and hands accepted the tribute with a beautiful smile on her face. All o f a sudden, she had become a her­ oine because she had been able to do something—to be o f real ser­ vice to others—in a way the others could not. The beautiful attitude T . Earl Y arborough. Vicc President, H arry and Bryant C om pany, C h arlo tte, N orth C arolina (500 Providence R oad, C h arlo tte. N C 28207).

¡6 6

SUFFERING

o f (his little girl will take her through life in a positive way. Life for her will be meaningful. She deserved the applause. As we think about our daily problems, our hurt and suffering, do we ever stop and give some thought to the help that music might be to each o f us? Music can change my attitude quicker than anything else. No matter what is wrong, when I hear Glenn M iller’s “ Moonlight Serenade,’’ my problem immediately goes away, or at least I feel better for a while. I believe music can be a good support system. Special music seems to lift our spirits. We all have our own songs. When we are hurting, one o f our special pieces o f music can have a dramatic effect on us. It is the memory o f that special music that really touches the heart. Attending the funeral o f a dear friend, my wife and I sat in the church waiting for the service to begin. Both o f us were really hurt­ ing. In a little while, the organist started playing. As she played the first piece o f music, which was very beautiful, it changed our mood immediately. We looked at each other and smiled. It was the music that had touched us. I do not rem ember any o f the beautiful scrip­ tures or words spoken at the service, but the music made a tremen­ dous impact on both o f us. During my many years in the field o f funeral service, I have de­ veloped some thoughts about music at funerals. First, all o f us should realize that no two funeral services are the same. Therefore, the funeral service, including the music, should be planned to meet the needs o f the family. Music sometimes provides a great release of emotions. We should never be critical if a family member requests secular music. I can easily understand when someone who is griev­ ing wants “ our song” played at the funeral. We should put aside our own preferences. It is not a time for a course in music appreciation. A great musician once said, “ Music is either good or b a d .” I feel that if the music meets the needs o f those who are suffering, it is good; if not, it is bad. To musicians who play for funerals or other events where people are suffering, I say this: D on’t ever forget that your music will be remembered when everything else about that special moment is for­ gotten. If your music is personal to the bereaved, you are lending a sincerely helping hand, to one person or, possibly, to a whole griev­ ing family and their friends. As a musician, playing for a funeral service may be a very painful service for you to render. But don’t ever forget that you are giving a beautiful lifetime memory. I hope that you will never forget how important your talents are to people who are hurting.

T. Earl Yarborough

167

When we are suffering, emotionally or physically, we are in a de­ pressed state o f mind most o f the time. Throughout my adult life I have been involved with people who are suffering emotionally. In my professional life, I see the suffering that comes from the death of someone beloved. There is no easy way through this kind o f suffer­ ing. One thing I have learned about suffering during my years as a funeral director is that a positive attitude toward life is a tremendous help in bringing the grieving person through a time o f suffering. The pain will still be great, but as dark as the moments, days and weeks may be, the person who has a positive attitude toward life will see the small light at the end o f the tunnel. Such a person will usually start talking about beautiful memories o f the one who died. This is the beginning o f a new and different life; it is the beginning o f living again. Throughout my life, I have been an optimist. I have always had a positive attitude toward life. To me, life has always been great, even through the many dark days I have had. I really think I know where and how I became a person with a positive attitude. When I was a little boy living on a farm in eastern North Carolina, I developed pneumonia. During those days, there was lit­ tle the doctors could do to fight pneumonia. Late one night, the fam­ ily physician came to our home to see me. After he examined me, he took my parents out into the hall to discuss my condition. The doctor told them there was nothing else he could do for me, and that he would come back the next morning if I was still alive. As soon as the doctor left the house, I decided right then that I would not go to sleep that night, bccause I knew that people died while they were asleep. Throughout the long night, I sat beside the beautiful fireplace and listened to the radio. One o f the great tunes I heard over and over again that night was a happy song written by Johnny M ercer—“ Ac­ centuate the Positive.” I fell in love with the song; it was my first known encounter with positive thinking. That song may have saved my life that night because o f its positive effect on me while I was suffering. It did not take me many years o f life to learn to “ accentu­ ate the positive and eliminate the negative.” Now that I have “ latched on to the affirm ative” I truly spend very little time with “ M r. InBetw een.” When people are suffering emotionally or physically, even if they are optimists, no one should expect them to be blindly cheerful. It is not within the human mind and heart to be happy and cheerful in the moments of sorrow that sometimes darken our lives. However, it

168

SUFFERING

does seem to me that it is in moments of pain that we appreciate a philosophy o f optimism the most. Hopefully, we can recognize that these dark moments, by the grace o f God, will be temporary. Hopefully, we will be able to see a future in which the influence of the suffering in our lives will be negligible. If there is one thing cer­ tain in this world, it is that we have no choice but to stand up to life. We are not invited to participate, we are summoned. When the pain o f suffering comes along, it is a nightmare. We need all the close human support that others can give us. Whether the pain is physical o r emotional, it is there and it hurts. One o f the greatest sources o f comfort to one who is hurting is for someone who is a good listener to sit and listen. Let me share with you a good story about the importance o f visiting and listening to a suffering person. There was a very lonely and negative man who lived alone and spent all o f his time in his little cottage. He knew that the years were going by fast and that his health was failing. He knew that for him, life on this earth would not last very long. He was a member o f a church, but he never attended the worship services with his old friends. One day his minister came to visit him. It was a very cold winter day and a fire was burning in the fireplace. For a while, the two men sat and talked. Then the minister reached over, picked up the poker, removed a red-hot coal from the fireplace, and placed it by itself on the hearth. Within a few minutes, the beautiful red-hot coal cooled off and turned black. Then the minister picked up the coal and placed it back in the fire with all the hot coals. Within a few minutes, the black coal was again glowing, and it became a brilliant red, like all the others. Immediately, the suffering old man received the message. He learned from this demonstration how important people are to each other. To hurt alone is the most traumatic suffer­ ing anyone can ever encounter. Is there really any way we can push back the curtain o f darkness when we are suffering? Is there really any way we can help push back the curtain o f darkness when a dear friend is suffering? It might be that if each o f us could learn to " a c ­ centuate the positive and eliminate the negative” in our attitude toward all o f life, we might learn to cope with our problems in a much better way. We should all remember that the past can never be changed, but that the future is always open, and belongs to each o f us. I sincerely feel that there is but one way to push back the curtain o f darkness, and that is to have a positive philosophy toward

T. Earl Yarborough

169

ourselves, each other, and life itself. This philosophy will not stop our suffering, but it will help lead us through it. Just maybe, this at­ titude toward life will make each day o f our lives worth living and worth sharing with others.

Dedicated to my brother, FRED RILEY YARBOROUGH and my sister, BERNICE YARBOROUGH LEWIS who have suffered both physically and emotionally, and whose positive attitudes have been an inspiration to each member o f our family.

T h is p a g e intentionally left blank

Aspects of Anxiety : Financial Concerns When Death Is Imminent Gerald Rosner

In the late 20th century America, the role played in our lives by financial and tax considerations is pervasive as well as oppressive. The frenetic activity generated by year-end tax planning is intensi­ fied many times over when dealing with life-end financial and tax planning. The old chestnut that describes the “ golden years” as those in which the gold you’ve managed to accumulate during your working years is given to doctors tells only half the story. In the absence of careful planning before death, the balance goes to the government. Is it any wonder then, that the uses and abuses of money should be a source of concern to terminally ill patients as well as to their bene­ ficiaries? I have observed numerous dying people who have devout­ ly wished to let go of life, of their pain and suffering, but who would not do so until they were satisfied that their financial affairs were in order and their families well provided for. Lerner (1985) made the following observation about watching her husband die: Death by illness, like birth, is possible only with the participa­ tion of the individual. This consists both of a release—letting go—and an active advance—goal directedness. The patient must at one time or another seek death—as a release, as sleep, as the end of pain—before physical destruction can end life. He must release his hold on life and surrender himself to nature. This is the process of dying. I believe that Lerner’s personal insight is generally valid. Letting Gerald Rosner, CL U , President, PM Planning Com pany, New Y ork, New York (575 Lexington Avenue, NY, NY 10022).

171

172

SUFFERING

go requires an active (even if not conscious) decision by the dying patient. There is a time to die when one’s body is terminally afflicted, but that time can be either extended or shortened by the will of the patient. Cassell (1973) has probed the medical and philosophical im­ plications of this phenomenon. What concerns us in this paper is its meaning to the financial counselor. Since the mid-twentieth century, our earnings have become in­ creasingly subject to non-voluntary types of planning and record keeping. Accountability to oneself, the bedrock of morality, is diminished when regulatory and investigative bodies exist for the sole purpose of scrutinizing every segment of our financial activi­ ties. The tax system has become less avuncular and more complex. A federal tax return can easily weigh half-a-pound if one has done no more than sell a stock or two and install storm windows in one’s home during the course o f a tax year. Those of us who live in cities and states that levy income tax have not one, but three tax collectors watching our every financial move. It has been said, less in jest than in truth, that one can no longer make a financial decision without having an accountant to the left and a tax attorney to the right to pro­ tect one from the ubiquitous watchdogs of government. Tax laws change frequently. Moreover, the Internal Revenue Code is extremely fertile: one secion begets three others to explain the first. One revenue ruling that is supposed to clarify a question­ able interpretation of the code can tie up the tax courts for years. The persistent threat of an IRS audit, which questions not only our thoroughness as record-keepers but our motives as well, can make trembling fools of the strongest of us. Consider, then, the plight of dying patients in their fragile, vulnerable state, questioning not only their own wisdom in distributing their property through a last will and testament, but also the accuracy of the advice given by their advisors. Will one’s estate tax return survive an audit? Will one’s beneficiaries actually receive what is intended? Will the insur­ ance be paid? When was the beneficiary designation last examined? Will one’s art works be overvalued and thus overtaxed? Will the business or practice do well enough to carry out its obligations to one’s spouse? And the most pressing question o f all: Why won’t anyone answer questions? As thanatologists, we know that dying pa­ tients are almost always best served by openness and honesty. Why, then, should they be diverted from discussing matters of deep and troubling importance to them?

Gerald Rosner

173

1. Family and friends do not want to appear venal. 2. Doctors and other medical attendants are not interested; these questions have nothing to do with the patient’s body. 3. In general, but with some happy exceptions, social workers, psychologists, and psychiatrists are neither trained in nor in­ clined to deal with financial matters. 4. Unless the family accountant or lawyer is called in specifically to discuss these matters with a dying client, they are likely to feel—wrongly, in my opinion—ethically proscribed from do­ ing so. Clearly, when financial concerns add to the suffering of a dying patient, it is advisable to call in a third party intermediary who is qualified to act as financial counselor to address those concerns hon­ estly and openly and to lay out the options for change in clear, pre­ cise language. Opportunities to review those facets of their estates that mean the most to them, followed by rapid implementation of any modifications that are possible and desirable will ease patients’ anxiety and help them to let go when they are ready. Although estate planning is best done when testators are well and fully possessed of their faculties, few people undertake it until they have been strongly motivated by feelings of mortality. The sense of urgency created by those feelings is both a help and a hindrance to financial counselors and, for that reason, special training and sensi­ tivity are required. Fortunately, symposia for lawyers, life insur­ ance agents, and the financial community at large are now offered on a fairly regular basis. As attendance at these symposia grows larger, we can expect more specialists to emerge as financial coun­ selors to the terminally ill.

REFERENCES Cassell, E. 1873. "Being and Becoming D e a d ." In A. M ack, ed. Death in American Exper­ ience. New York: Schocken Press. Lerner, G. 1978. A Death o f O ne's Own. New York: Simon and Schuster, pp. 263 ff.

T h is p a g e intentionally left blank

Suffering and the Quest for Meaning Jeffrey A. Watson

IN TR O D U C TIO N El Tablazo looked too close. It was approaching too fast. Ex­ ploding into the 14,000 ft. peak, the D C -4 disintegrated with a metallic scream. The Avianca Airlines flight bound for Quito, Ecuador flamed crazily into the deep ravine. For one awful moment the night o f a cold Colombian mountain was illumi­ nated. Then came darkness and silence. . . . Before leaving the airport earlier that day a young New Yorker named Glenn Chambers scribbled a note on paper from the floor o f the ter­ minal. The scrap o f paper was a part o f a printed advertise­ ment which contained the single word “ w hy?" in the center. Chambers quickly jotted a last minute note to his mother around that printed word, dropped it in an envelope, and into a mailbox before boarding. He assured her that there would be more to come about his lifelong dream o f ministry with Voice o f the Andes in Ecuador. . . . But there was no more to come. Between the mailing o f that final note and its delivery to Mrs. Chambers, El Tablazo had snagged his flight and life out o f the night sky. The letter arrived later than the news o f his death. So when the letter was opened only one question burned up at her with irony, " w h y " .' This is the question that comes first and lasts longest when we suf­ fer. Why? Why me? Why now? Why this? This is among the most fundamental questions o f life—is there meaning in suffering? Because of the human instincts for survival, for abstract reasoning, and for emotional self-awareness, the question is constantly raised: Jeffrey A. W alson, T h .M ., D. M in., Pastoral C are A dvisor. Joseph Richey H ospice, B altim ore, M aryland; Associate P rofessor o f C ounseling, W ashington Bible C oliege, L anham , M aryland (2909 B lueberry i.an e, B ow ie, M D 20715).

176

SUFFERING

Is there any meaning in my suffering? Can anything good come from this pain?2 Because suffering always prompts some quest for meaning, pro­ fessionals and volunteers in helping roles should at least attend the question. At a very basic level, they can become companions in the sufferer’s quest. Even when sufferers do not achieve their intended destiny to find absolute meaning, the companionship o f fellow human beings along the quest has made their journey easier.3

/. IS TH E R E M E A N IN G IN SU FFERING ? Sufferers behave as if there is meaning in suffering. Their telling behavior is that they characteristically quest for meaning and ask “ W hy!" But is their quest anything more than a designedly empty one? Is their hope o f finding meaning any more realistic than that of a desert traveler groping toward a mirage? Is their behavior any more than a confession that to stop questioning is to be dead? Isn’t their insistence on finding meaning only a refusal to surrender to overpowering nature, or meaninglessness, or fate? The quest for meaning in suffering includes at least the subjective perception o f the sufferer. How the individual sufferer attaches meaning to an event at least gives personal meaning to the ex­ perience. A recent case illustrates the point. M rs. Ruby was an elderly married woman who had suffered for several years from several major physical and family prob­ lems. After suffering her third stroke, she was again rushed to the nearest hospital where she lay close to death during the final four days o f her life. Her death was possibly hastened by the events o f her first night during this final hospitalization. After her condition had stabilized in the emergency room , she was moved to another floor and into intensive care. Because of other pressing priorities, M rs. Ruby’s cardiac monitor was to be attached later in the night shift. Unfortunately she suffered a massive heart attack in between nurse’s checks on her. She was discovered without pulse or respiration. (Reports varied as to how long she had gone since the last nurses’ check—esti­ mates ranged between 5 and 30 minutes.) After the electric paddles and injections were used, her heart hesitantly began to beat. She never regained consciousness and could not support

Jeffrey A. Watson

177

her own breathing. Despite serious infection and edema, she lived the next four days with the help of IV ’s, respirator, and monitors for her heart and brain. Since she only registered minimal lower brain activity over these four days, she was eventually weaned from the respirator. While she struggled to breathe, she was given an oxygen mask and moved to a nearby room. With family and clergy nearby, she convulsed once and died. By family request no efforts to resuscitate her were made.4 Was there any suffering in this sequence of events? It seems there was suffering from several personal viewpoints. First, Mrs. Ruby suffered some physical pain from the time of her stroke to her heart attack. She may even have experienced some physical or psychic pain during her last days, when she had minimal brain function. (Experts disagreed on the implications of her brain wave patterns.) Second, Mr. Ruby, her disabled house-bound husband, suffered significant psychological pain since Mrs. Ruby had been his wife and caregiver for many years. Who would take care of him now? Because he was confined to home, he felt unable to help her during her final illness. He was staggered by the medical bills that accrued from the time of resuscitation until her death. He threatened suicide under the pressure. He waved his guns around and attempted an overdose of medication. Third, the family suffered various responses to the crisis. Mrs. Ruby’s sister drank whiskey steadily from her purse during the four days. Sitting in the hospital family room, she constantly muttered or shouted, “ You killed my sister!’’ Mrs. Ruby’s first son threatened several hospital staff members with a malpractice suit. He charged that her brain damage and death were caused by the lack of monitor­ ing personnel or equipment at the time of her heart attack. Mrs. Ruby’s daughter adapted a plastic smile, frequently repeating the words, “ Isn’t she beautiful?” Mrs. Ruby’s second son came from out of state and lost several days of valuable business. At the hospi­ tal, he assumed the roles of spokesman, umpire, and amateur law­ yer. Fourth, the medical staff suffered professional tensions in relation to this case. Several night nurses and a doctor were in jeopardy over the lack of initial observation in intensive care. The family physi­ cian, who had been out of town during the first 24 hours of the hos­ pitalization, was in conflict with his junior associate. The associate

178

SUFFERING

had pronounced M rs. Ruby “ brain dead” after the resuscitation in intensive care. He had told the family to “ agree on a decision to turn off the respirator . . . and we will disconnect all life support.” He had also told the family that M rs. Ruby was “ d ead ,” irreversibly comatose, without thought or pain, and would cease all breathing upon discontinuation o f the respirator. When the senior physician entered the case, he told the family that M rs. Ruby was “ alive,” might recover, probably had some conscious thought, and would be tortured by discontinuing the use o f the respirator. He overruled his associate and forbade the family to effect their recently achieved decision to end life support. Fifth, the parties who seemed legally responsible suffered confu­ sion o f roles. The hospital administration and physicians hesitated to act on the family’s decision to end life support. They felt they were under pressure from the fam ily’s instability manifested in suicidal gestures, drunken accusations o f “ m urder,” and the threat o f a m al­ practice suit about the heart attack-resuscitation time gap. However, the family felt it was their mission to terminate life support. Not on­ ly had the associate physician advised them to do so but the family had agreed with him and supported Mrs. Ruby’s previously stated desire not to be kept on life support. Legal options were evaluated; clergy were consulted; and finally an agreement was reached. A neurosurgeon would be consulted to evaluate the brain scan evidence. He would be permitted to write orders either to terminate or sustain life support. The family would follow his advice without jeopardy to anyone. He studied the brain scan evidence for 24 hours and then advised that M rs. Ruby be gradually weaned from the respirator. Once the respirator was removed, M rs. Ruby “ lived” a few hours and then “ d ied .” Sixth, even between the two clergyman involved, there was some tension over roles. The pastor o f M rs. Ruby’s daughter was with the family throughout the final four days. He was there through the family conferences and when M rs. Ruby died. Another clergyman, who had been Mrs. Ruby’s minister in the past, arrived after her death. He assured the family that a third party had kept him in­ formed by telephone about all o f the developments. He was now ready to plan the funeral service. He did not want any other minis­ ters involved. This was his family. (M ore importantly, it seemed that he was protecting his honorarium for the funeral service.) This case raises many primary questions about bioethics and euthanasia. But beyond these questions, some simple observations

Jeffrey A. Watson

179

stand out. First, suffering inevitably involves meaning. No one went through this event without strong feelings and thoughts. From pa­ tient, to family, to medical and clergy professionals, no one experi­ enced these four days as neutral observers. It would have been im­ possible to do so and still be human. In addition, the meanings that the individuals attached to these events were highly varied. Everyone touched by these experiences attached to them significant meanings that bore on real life. Medical, psychological, familial, legal, ethical, religious, and financial balances were disturbed and needed to resettle. There was no guarantee that any two involved people would resettle on the very same meanings from these days. In fact, there was no guarantee that any one individual would main­ tain the same meaning and memory of these events over time. Per­ sonal meaning in suffering is highly subjective, self-serving, and fluid. It is not external, objective, or verifiable. The question that remains is whether or not one can assess mean­ ing in suffering beyond the individual personal level? Is there a higher meaning in suffering that extends beyond individual percep­ tion? This question can only be addressed through analysis or major secular and religious worldviews of generic human suffering. //. HOW DOES ONE A SSE SS H IGH ER M EANING IN SUFFERING? The archetypes for meaning in suffering must come from the ma­ jor global worldviews. Religious cultures and scientific philosophies have each probed the question of higher meaning in life and thus in suffering—that is, meaning beyond the personal level. It is possible to synthesize and summarize these archetypes of meaning in suffering. The synthesis suggests a continuum of truth spanning two major epistemologies. The first epistemology is the Secular/Scientific Worldview; the second is the Sacred/Religious Worldview. A Continuum of Epistemologies Secular/ Scientific ^ Word view

Sacred/ Religious Worldview

Both sufferers and people-helpers interpret the world from some point on this continuum. Each person views the world through

180

SUFFERING

lenses ground by the respective worldviews to which they have become attuned. In order to sense one’s location on the continuum, some contrasts and comparisons can be drawn. W hereas the Secular/Scientific Worldview tends to be modern, W estern, and physics-based, the Sacred/Religious Worldview tends to be ancient, Eastern and meta­ physics-based. Whereas the Secular/Scientific Worldview assumes the cosmos to be autonomous from supernatural forces, the Sacred/Religious W orldview assumes that the cosmos depends wholly on the supernatural realm. Whereas the Secular/Scientific Worldview describes existence on an evolutionary model (survival o f the fittest vs. extinction o f the maladaptive), the Sacred/Religious Worldview describes it on a creationist model (divine salvation vs. divine calamity). The danger of living by either epistemological extreme is that one can become closed to broader aspects o f reality. The closed secularist/scientist may totally reject the possibility o f afterlife, mystical communication, prophetic revelation, and spontaneous nonmedical intervention. On the other hand, the closed religion­ ist/ritualist may totally reject the possibility o f organic etiologies for illness and death) or humanitarian ethics (against religiously motivated warfare and self-destruction) and so forth. Another danger o f living by either epistemological extreme is that people-helpers may be unable to interact profitably with others who do not share their worldview. Unless scientists work only with cadavers in hospital morgues, they are going to come across be­ lievers o f various sorts. Similarly, unless members o f the clergy are chaplains in sectarian communes, they are going to come across as agnostics and atheists. Because people-helpers and sufferers exist at every point o f the continuum, tolerance and openness are needed for profitable interaction among the varying perspectives. In the struggle between competing worldviews, science needs to give religion permission to offer value and purpose to life beyond the random functions o f time, matter, space, and energy. But by the same token, religion needs to give science permission to cducate it beyond its folk ignorance and unhealthy superstitions. The question boils down to this: Can people-helpers choose a closed and rigid worldview o f life without harming the people they hope to help? Can people be viewed as people at either extreme on the continuum? It seems unlikely. The rigid worldview o f the secu­ lar scientist sees sufferers not as people but as real or potential carri­

Jeffrey A. Watson

181

ers o f disease. The rigid worldview o f the sacred religionist sees sufferers not as people but as real o r potential converts to an orga­ nized religious system. Any closed o r rigid epistemology that denies others their human w orth and the freedom to live, believe, and suf­ fer as they choose ceases to be therapeutic. In order to contrast open and dynamic worldviews from closed and rigid ones, four schools o f thought can be identified on the con­ tinuum o f epistem ologies. On the continuum o f epistem ologies, the schools o f O rthodox Scientism and O rthodox Religionism are closed systems. (See Figure 1.) They both com m it the fallacy o f over-sim ­ plifying the human being. Epistemology 1 view s man as a “ m a­ chine , *’ whereas that o f Epistemology 4 sees him as a ‘ ‘ghost. ’ ’ Epis­ temology 1 has an incom plete model o f suffering. It says, “ man the machine happens to have d y sa n c tio n e d .” Epistemology 4 has an in­ com plete model o f suffering. It says, “ God (or gods) has directly sent calam ity.” The form er model sees chance as the overriding dy­ nam ic; the latter attributes it to divine intention. W henever secular o r religious epistem ologies become fixated on an incomplete and closed model o f suffering, they lose the flexibility needed to give the greatest help to suffering people. Only Open Em­ piricism and O pen Theology allow a holistic epistem ology. By con­ ceding some possible fram ew ork for a m aterial/im m aterial anthro-

FIGURE 1 A Continuum o f Epistem ologies Secular/ Scientific Worldview

S acred/ Religious Worldview 2

Orthodox Scientism

3

Open Empiricism

Open Theology

Orthodox Religionism

Biological Anthropology

Psychic Anthropology

SCIKNCR

closed to th e pheno­ m ena of m etaphysics (esp. n atural sciences)

SCIENCE/ Religion open to som e paranorm al phenom ena (esp. social sciences)

REI.IGION/ Science

RELIGION

open to closed to th e laws som e n a tu r- o f physics alistic (esp. magicaJ presupreligion) positions (esp. co n tem ­ porary theology)

SUFFERING

182

pology and a natural/supernatural cosmology, holism is possible. It thus becomes the task o f Open Empiricism to develop holistic medi­ cal care while Open Theology develops holistic spiritual care. It is within these frameworks o f holism that the question o f meaning in suffering can be advanced. Beyond individual personal meaning, generic archetypes o f meaning can be explored from the perspective o f epistemology or worldview. III. H O W D O ES H O L IST IC S P IR IT U A L C A R E IN T E R P R E T M E A N IN G IN SU FFERING ? Holistic spiritual care proposes four generic meanings for suffer­ ing. They are: Correction, Affirmation, Altruism, and Naturalism. These generic meanings cover interpretations o f suffering that focus on its long-term effects. Some long-term effects view God as the direct savior-mediator o f life (esp. Correction, Affirmation). Others view God as the indirect creator-nature o f life (esp. Altruism, Naturalism). The former pair focuses on “ m e” (the individual suf­ ferer), whereas the latter focuses on “ w e” (the total human race as sufferers). These archetypal frameworks o f meaning offer both a positive orientation to suffering (esp. Affirmation, Altruism) and a negative orientation to suffering (esp. Correction, Naturalism). There are archetypes that lend themselves more to a RELIGION/Science W orldview (esp. Correction, Affirmation); others lend themselves to a SCIENCE/Religion Worldview (esp. Altruism, Naturalism). A summarizing chart may clarify the generic meanings for suffer­ ing. Archetypes f o r the M eaning o f Sufferin g Meaning

Exam ple

Worldview/ G odview

I. Correction—

"I am being corrected of my wrong-doing or my wrongbeing”

An automobile driver who suf­ fers physical in­ ju ry , g rief and legal penalties for drunk d riv­ ing that has in­ ju re d h im s e lf and others

W orldview: RELIGION? science Godview: savior/ mediator o f life

Focus/ Orientation Focus: “ W e" Orientation: Negative

183

Jeffrey A. Watson

Meaning Affirmation—

"1 am being affirmed in my right-doing and my right-being"

Naturalism—

"I am experiencing general human destiny”

Altruism—

"1 am experi­ encing a loss that will have benefit to others"

Example

Worldview/ Godview

Focus/ Orientation

A prototype per­ son who suffers h a r d s h ip a n d loss because o f h is e x em p lary lif e o r v ie w points out the in­ con sisten cy o f others and o f­ fers a positive model for being

W orldview . R EL IG IO N / science G odview. savior/ m ediator o f life

Focus: “ M e’1 Orientation: Positive

A man w ho suf­ fers pain o f ex ­ h a u stio n from p h y sical w ork o r a woman who suffers the pain o f childbirth

W orldview: SC IE N C E / religion Godview: creato r/ nature o f life

Focus: " W e ’ Orientation: Negative

A soldier who su ffe rs in ju ry , g rief, o r death while fighting a a just w ar for th e p ro te c tio n o f others

W orldview: SC IE N C E / religion Godview: creator/ nature o f life

Focus: “ W e’ O rientation: Positive

Each o f these archetypes for the meaning o f suffering is confined by Biblical theology as well as other m ajor religious traditions. T here are Biblical characters, dialogues, and teachings that support these archetypes for suffering. F or instance, the m ajor Biblical characters who can illustrate these meanings are Jonah, Abraham , A dam /Eve, and Joseph.5 1. Correction

2. Affirmation

3. Naturalism

Jonah suffers hardship at sea because he refuses to preach to Nineveh when God com m ands him to do so (Jonah 1-4). Abraham suffers through a great test o f his faith in order for God to confirm his great character and faith (Genesis 22). Adam and Eve suffer pain in manual labor and childbirth labor because that is the nature o f life by G o d ’s decree (Genesis 3).

184

4. Altruism

SUFFERING

Joseph suffers antagonism from others because of his exemplary life and so that God can help others through him (Genesis 37-50).

These same archetypes are also found in the dialogues of the great sufferer Job.6 1. Correction

Job’s friends tell him that his suffering has come to punish or correct his wrong-doing or wrongbeing (Job 4:7). 2. Naturalism At the beginning, Job interprets his suffering as a part of the normal destiny for all people (Job 5:7). 3. Affirmation In the end Job grows in faith and humility, recog­ nizing that God is not accountable to give every sufferer an explanation of his suffering (Job 42:1-6 cp. 38:3). 4. Altruism Job is used by God to teach a special moral les­ son to Satan, Job’s friends, and Job’s wife (Job 1:8-12;42:7-10). These four archetypes for suffering are also included thematically in Biblical teachings on suffering. 1. Correction

The nation of Israel is temporarily disciplined by the Lord to restore her to her former religious purity (Lamentations 1-5). 2. Affirmation Believers are strengthened in their qualities of life and faith through the trials they undergo (James 1:2-4; Hebrews 12:1-13; 2 Corinthians 12:1- 10).

3. Naturalism

4. Altruism

Certain hardships are an inherent part of life in the natural order under God’s control (Luke 13:1-5; Ecclesiastes 1-12; Romans 1:24, 26, 28). Certain hardships are not intended to affect the sufferer as much as to effect change or benefit to others outside the suffering (John 9:1-3).

Even physical death can be viewed through this archetypal grid of meaning.

Jeffrey A. Watson

185

1. Correction

Some people, like Ananias and Sapphira, suffer premature death to prevent their character flaws from influencing others (Acts 5:1-11 cp. 1 Cor­ inthians 11:28-32; 1 John 5:16; James 5:19-20). 2. Affirmation Some outstanding believers, like Enoch, Moses, and Elijah, are hastened into God’s presence as a gesture of approval by God (Genesis 5:22,24 cp. Hebrews 11:5; Deut, 34:5-7; 1 Kings 2:1, 11). 3. Naturalism Most people, like Abraham, Isaac, and Jacob, live out their full lives and die without any appa­ rent correction, affirmation, or altruism in the timing and circumstances o f their deaths (Gen­ esis 25:7-8; 35:28-29; 49:33). 4. Altruism Some people, like the martyr Stephen, suffer deaths that have broad positive influence on oth­ ers (Acts 6:1-8:4). IV. CONCLUSIONS AND APPLICATIONS TO THE PEOPLE-HELPING ROLE Human beings behave as if there is meaning in suffering. They reveal this conviction by their energetic quest for meaning in life and in suffering. In support of the idea of meaning in suffering, ob­ servers can at least conclude that individual personal meanings are, in fact, attached to suffering. Beyond these subjective personal meanings, higher purposes or effects in suffering can only be in­ ferred from major worldviews. The sacred and secular epistemologies that are most mutually exclusive tend also to be most rigid and closed. As such, their interpretations of suffering are the least helpful and most damaging to the therapy o f the suffering per­ son. Moderate and potentially holistic worldviews permit the ex­ pression of four generic archetypes to suffering. These archetypes, Correction, Affirmation, Naturalism, and Altruism, are the themes of meaning that people-helpers frequently hear, manage, modify and generate. One of the values of identifying archetypes of meaning to be used in holistic spiritual care is the potential for integration between Open Empiricism and Open Theology. Whether one has a scientific model of reality that is open to religion or vice versa, there is clear room for mutual enrichment between disciplines in the practice of helping

186

SUFFERING

people to cope with suffering. Although the archetypes have been il­ lustrated and described from a theological model, they can easily be supported with social science constructs.7 T here are limitations on the use o f archetypes in caring for suffer­ ing people. First there is the logical invalidity o f saying that one’s chosen higher meaning in suffering was the cause o f their suffering. This commits the fallacy o f post hoc—prompter hoc (i.e ., the fallacy says that if something follows an earlier event in time, it also follows that earlier event in causal relationship). The reality is that no one can know the mind o f God concerning a specific incident (thus divine intention) unless there has been persuasive revelation of meaning. Such is rarely the case. If a sufferer settles on a higher meaning to their suffering, this may in fact correlate to a divinely in­ tended higher meaning to their suffering. But there is no way to demonstrate when this is the case. The second limitation on the use o f archetypes in caring for suf­ fering people is over-simplification o f the counseling goal. The goal is not merely to get sufferers to grasp at an optional higher meaning of their experience. Leading them to do this and then disengaging from the counseling role may do more harm than good. The treat­ ment goal is to assist people in pain with their individual quests for higher meaning in suffering. If they can come to a steady, healthy, maintainable higher meaning in their suffering, a hurdle has been crossed. They have integrated their loss with their larger life con­ text. They have connected life before the loss with the crises, adjust­ ments, and reinvestments that form the bridge to a therapeutic future. The positive implications o f these ideas leave the professional or volunteer people-helper with several clear responsibilities. 1. Be a companion to sufferers —identify with the pain o f their losses —explore the circumstance and extent o f their losses —attend any early gropings for meaning in their losses 2. Listen for statements o f meaning from sufferers r-d o n ’t push the issue o f higher meaning on someone who is suffering —allow the person’s natural curiosity, instincts, and energy to surface the issue o f higher meaning

Jeffrey A. Watson

187

—don’t prematurely criticize or applaud any early meaning statements 3. Value any self-disclosure on meaning a sufferer offers —analyze each meaning statement as a self-statement (what does this tell me about the sufferer’s view o f himself?) —analyze each meaning statement as an other-statement (what does this tell me about the sufferer’s view o f the w orld, o f God, o f his family, o f his people-helpers?) 4. Invite sufferers’ interpretation o f their own experience —solicit perceived parallels to other experiences and themes in their own lives o r in the lives o f others —give guidance to an unstructured seeker (casually discuss the archetypes o f meaning) —support a sufferer who is exploring healthy options for meaning (use theological or psychological material to facili­ tate exploration) 5. Validate sufferers’ interpretation of their own experience —clarify and restate the meaning option that has been dis­ cussed —seek further definition by the sufferer—explore the implica­ tions to self and other —offer alternatives for reframing the meaning (when the ex­ isting framework seems destructive or unsynchronized with the larger life message) —test the strength o f the epistemology (does the meaning con­ struct amplify the autobiographical life line to date? does it permit further growth and development in the future?) —identify supportive resources and hope for the sufferer to ex­ tend his identity and meaning in the future.8 ENDNOTES 1. Charles Sw indoll, For V io se That H u n (Portland: M ullonam ah, 1980). p. 4. 2. T h is paper is not try in g to raise the question o f suffering from a cosm ological view ­ point (“ w here did evil com e fro m ? ’’), from an ontological view point ( " d o e s evil have an in ­ dependent e x iste n ce ? " ), o r from a taxonom ical view point (" w h a l kinds o f suffering exist in the w orld and w hat kinds o f responses to suffering exist in the w o rld ? " ). R ather this paper is concerned w ith the teleology o f su fferin g — “ w hat kinds o f en d s, o r goals, o r perm anent e f­ fects m ight suffering be w orking out in the lives o f p erso n s?” T he p ap er is not concerncd pri-

188

SUFFERING

n ia rily w ith th e question o f w h e th er Ihc working out ofpermanent effects is acco m p lish ed by sim ple n atu re o r sp ecial s u p ra -n a tu rc . It is in stead c o n c e rn e d w ith the process through which sufferers go a s they q u e st fo r an d h o ld to m ean in g in su ffe rin g . 3 . E ven fo r th o se p e o p lc -h c lp crs w h o a rc p e rsu ad e d th at su ffe rin g is m eaningless and life is a b su rd , th e ir p e rsu asio n is a p h ilo so p h ical m ean in g . T h e ir c a rin g c o m p a n io n sh ip c an b e in an d o f itse lf th e ra p e u tic. 4 . T h e fam ily n am e h as b een ch an g ed fo r co n fid en tiality . 5. Som e th in k e rs m ay q u e stio n th e lite ra l u se o f B iblical tra d itio n s in a sse ssin g h ig h er m ean in g in s u ffe rin g . W h at is essen tial is not th e total th e ological ag re em en t a m o n g pcoplchclp crs but th e re c o g n itio n o f co m m o n th e m e s. T h e th e m e s o r a rc h ety p es a rc a lso p re sen t in a w id e v ariety o f lite ra tu re s, c u ltu re s , an d p h ilo so p h ies. 6 . T h e b o o k o f Jo b is a cla ssic a n cien t N e ar E a ste rn tre a tm e n t o f su ffe rin g . It has puzzled m any o f its re a d ers b y not p re sen tin g a sim p le e x p la n atio n o f s u ffe rin g . Instead o f p resen tin g o n e stereo ty p e o f s u ffe rin g , it c o n ta in s all fo u r o f th e b a sic a rc h ety p es in o n e fo rm o r a n o th er. 7. T h e arc h ety p es o f m e a n in g p ro v id e ro u g h c o rre la tio n s to som e self-co n cep t d e v e lo p ­ m en ts, to so m e p sy ch o d y n am ics o f g rie f, to so m e lev els o f M a s lo w 's H ie ra rc h y o f H um an N e ed s, to so m e sty le s o f co n flict m an ag em en t a n d g ro u p d y n a m ic s, a s w ell as to som e tra d i­ tio n al p sy ch o lo g ical th e o ry . 8. F ro m th e stan d p o in t o f s u p p o rtiv e re s o u rc e s , Ihc su ffe re r is m ost likely to find this ro le in a c o u n se lin g , fa m ily , o r co m m u n ity re la tio n sh ip . T h e essen tial in g re d ie n t is s u p p o r­ tiv e rc flc c tiv c d ia lo g u e . F o r Ihc s u ffe re r o r p co p lc -h c lp er w h o d e sire s re a d in g m ate ria l to c la rify so m e o f this ro le , se v e ra l tre a tm e n ts m ay b e h elp fu l. F o r Ihc su ffe re r en g ag ed in m ean in g fu l reflectio n : L cltcm an S trau ss, In Cod's Waiting Room-Learning through Suffer­ ing (G ran d K apids: R ad io B ible C la ss , 1984). F o r th e pc o p lc -h c lp er w ho is involved w ith d e ath , c h ro n ic p a in , o r reficctiv c d ialo g u e re sp ec tiv e ly : E d w ard D obihal and C h arle s S te w a rt, When a Friend is Dying (N ash v ille: A b in g d o n , 1984); Jo se p h F ic h le r, Religion & Pain (N ew Y ork: C ro s sro a d s , 1981); an d Ira P ro g o ff, At a Journal Workshop (N ew Y ork: D ialo g u e H o u se, 1975); W o lfg an g S c h rag e an d lirh a rd S. G c rstc n b e rg c r, Suffering tra n sla ted b y Jo h n E. S teely (N ash v ille: A b in g d o n . 1977).

“And Day Brought Back My Night” Elizabeth K. Hill

Milton’s last sonnet, the blind poet’s dream of his deceased wife, has long had widespread appeal. With acute psychological realism, it presents one aspect of a mourner’s suffering, the bereaved person’s dream. Perceived briefly, only to vanish as the dreamer wakes, the subject of this sonnet was indeed profoundly loved and deeply missed. This highly personal statement is as much a part of Milton’s own mourning as it is of general human experience. The poem reveals, in fact leads the reader into sharing the agony result­ ing from being bereaved of a beloved spouse. Although known to be Milton’s last sonnet, it probably is not his last poem. The date of its composition is not known, nor can it be determined with certainty which of the two wives who predeceased him is the subject of it.1 The references to “ child bed taint” and “ purification in the old law,” or Mosaic ordinance, indicate that the death was connected with childbirth. Milton’s first wife, Mary, died in May, 1652, a few days after giving birth to a daughter, Deborah. But his second wife, Katherine, could also be considered, and prob­ ably was, to have died in childbirth, even though her demise, along with that o f her infant daughter, occurred four months after the birth. Katherine had been tubercular, and although her disease was arrested during pregnancy, its progress was accelerated because of the delivery, and the family would surely have thought of her as having died in childbirth.2 Biographical information is thus of little use in dating the poem or identifying the subject. Milton’s second marriage is generally be­ lieved to have been a happy one and his first miserable. But far too little is actually known about either marriage to provide an adequate basis for speculation about this poem. But it is known that Milton re­ tained, throughout his life, an exalted view of matrimony,3 even a sacramental one. “ Dearer thyself than all,” says Adam to Eve (PL Elizabeth K. Hill, P h.D ., Independent Scholar, Brooklyn, New York (492 Stale Street, Brooklyn, NY 11217).

189

190

SUFFERING

4.412). And she replies, “ O thou for whom/ And from whom I was form ’d flesh o f thy flesh,/ And without whom am no end” (440-42). Adam’s statements a few lines later are even m ore unitive: ‘‘Part o f my soul I seek thee, and thee claim / My other half” (487-88). A prelapsarian m arriage, to be sure, but it is also M ilton’s vision o f possible conjugal happiness in this mortal life. His esteem for marriage and his expectations from it were great: and here perhaps lie some reasons for his disappointment with his first union. Here also may be the root o f some o f the intensity o f suffering in the sonnet. ‘‘Sorrow ,” said C .S. Lewis, “ is not a state but a process. . . . G rief is like a long valley, a winding valley where any bend may reveal a new landscape.” But, he adds, “ not every bend does. Sometimes you are presented with exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn’t a circular trench. But it isn’t. There are partial recurrences, but the sequence doesn’t repeat.” 4 The phases o f shock, recognition, reaction, and recovery, which thanatologists cite as normal stages o f mourning, may be successive o r simultaneous.5 And the cycle o f personal disorganization and reorganization, m oreover, may recur over a period o f several years. The sonnet could represent any or all o f these stages. If the fact that the mourner dream s is regarded as a denial o f reality, then it is a first stage event. But M ilton’s final line shows both an awareness of his loss and an expression o f great sorrow: his “ night,” far more than his blindness, is his realization that his “ saint” has truly fled. Thus, the poem could belong to stage two. But if his idealization o f his wife is interpreted as the image-splitting often involved in a m ourner’s ambivalence, o r even hostility, then perhaps the poem belongs to the reaction phase. O r perhaps the fact that Milton was able to write it all indicates recovery. The dream about the deceased may occur at any stage o f mourn­ ing. Although perhaps more frequent when the death has been re­ cent, it seems to be far more closely related to the m ourner’s rela­ tionship to the deceased than to the time elapsed since death. W hether regarded as a “ guardian o f sleep,” a “ garbage c an ,” or a m ere assortment o f random elements, the dream is a selection, em ­ bellishment, and distortion o f portions o f past experiences.6 But in a m ourner’s dream the deceased may well take on an intensity not manifested in life. Indeed, “ the intensity o f a whole train of thought,” as Freud put it, “ may be concentrated within . . . a single figure.” 7

Elizabeth K. Hill

191

In this way, the poem itself operates much like a dream . With its wealth o f allusion to classical, Hebraic, and Christian traditions, the sonnet actually concentrates them into the dream figure, the wife who is first called “ saint” and then likened to the legendary Alcestis. And it is the “ saint,” whom we perceive in terms o f the classical heroine, who becomes the cumulatively concentrated im­ age o f this wealth o f tradition and feeling. For this reason, it is useful to dwell a bit on the Alcestis legend as Milton understood it. Although there w ere, in his time, other ver­ sions o f the story, one that he certainly knew was the play by Euripides.8 The fifth century B.C. Greek poet begins the dramatic action on the day o f Alcestis’ death. H er husband, Admetos, king of Pherai, as we learn from the speeches o f other characters, had been doomed to an untimely death.9 But Apollo had made a bargain with the Fates to the effect that the king’s life would be extended if some­ one else would die in his place.10 The only person willing to do so was his wife. The queen dies but is restored, through the interven­ tion o f Herakles, to A dm etos.11 Such is the bare outline o f M ilton’s allusion. But he knew his Euripides well, well enough, surely, to remember specific scenes and lines clearly. The Greek text, in paring the onstage action to a minimum, presents and explores many aspects o f the suffering in­ volved in death and mourning. In fact, to anyone familiar with the ancient work, the very mention o f Alcestis’ name conjures up not only her return from the dead but also the very powerful scenes pre­ ceding her death, lines which virtually overshadow the rest o f the play. Near the beginning o f the Euripidean work, the chorus, asking whether Alcestis is still alive, is answered by a maidservant who de­ scribes the queen’s last day on earth. Much o f this speech and the choral ode following it praises the noble Alcestis in a manner pro­ phetic o f the way M ilton’s Satan addresses Eve: “ Happier thou mayest be, worthier canst not b e” (PL 5.76). Implicit, o f course, in the situation, is the enormity o f Admetos’ imminent loss, and here the lines o f the maid and the chorus become expressions o f anticipa­ tory mourning. “ You pierce my soul,” cry the latter, “ you pierce my mind” (line 108).12 By now the reader is also involved in the suffering in the play and is prepared for the entrance o f the two main characters. Although both Alcestis and Admetos are grieving here, it is the king who seems to be suffering the more intensely, uttering the onomatopoeic

192

SUFFERING

“ oimoi, ” a term far more expressive o f sorrow than the “ alas” by which it is so often translated. He agrees to her request that he not rem arry and vows to mourn her until he is buried next to her. In this context he makes a statement which Milton must surely have re­ membered. Wistfully, he says to Alcestis, “ Perhaps you might visit me in dream s and gladden me: sweet indeed it is to behold one’s love in the night, for however long it lasts” (354-56). Although the dream is fleeting, Admetos foresees some consolation in its momentary joy. Indeed, the dream statement might even seem to be the threatened Admetos’ initial numb denial o f his w ife’s death. In the same pas­ sage, he proposes commissioning a statue o f her to hold in bed and boasts that, had he the powers o f Orpheus, he would retrieve her from Hades. Furtherm ore, he urges the dying queen to live and is incredulous even when she is breathing her last. The chorus also finds the situation unreal. Admetos also expresses anger, wishing his own death before Alcestis actually dies as well as in the context of a later lamentation. And returning from the funeral, he reproaches a servant for not let­ ting him throw him self into the grave. Although Admetos here ex­ presses his desire for union with Alcestis as well as his grief, his words also indicate self-directed anger. He now feels very guilty in­ deed and indulges in almost paranoid self-punishment in wondering what people will say about him. One word that Admetos uses in begging Alcestis not to die, not to leave him—“ me pro d u s," he says, “ do not give up ” —carries very strong connotations o f treachery. Although the word prodidomi can mean simply to give up, it also had a very widespread signification o f “ to betray.” Thus, we find Euripides’ very choice o f words indi­ cating Admetos’ anger, his sense o f being cheated in a bargain to which he had him self agreed. The major outburst o f Admetos’ anger is directed, in a scene shortly after Alcestis’ death, towards the father who had refused to die for him. Even so, the hostility towards the living which is so often a part of the reaction stage occurs in Admetos’ speeches both before and after the queen’s demise when he states him self unable to bear the sight o f other women her age, either her friends or the wives o f his friends. Modern readers who have been bereaved o f someone close will find a good deal o f psychological realism in Euripides’ presentation o f Admetos’ attitudes and behavior. And one feels very strongly in­

Elizabeth K. Hill

193

clined to think that the mourning Milton also remembered the words which spoke to his own condition. Such a statement is, o f course, a highly subjective one, a speculation. But at least one modern mourner, awakening from a dream o f the deceased, has recalled the lines “ I wak’d, she fled, and day brought back my night.” Thus, the recollection o f the mourning Admetos, as well as o f the dead and restored Alcestis, makes this allusion an appropriate, even natural simile for M ilton’s dream. But the restoration scene, in which Herakles brings Admetos a veiled Alcestis whom the king does not at first recognize, is also prominent in the sonnet, and not only because M ilton’s “ saint” is veiled. Herakles asks the king to keep the putative stranger, whom he claims to have won in a wrestling match, until his return from his next labor. Grief-stricken and mindful o f his vow not to rem arry. Admetos refuses and resists his friend’s efforts at persuasion. But Herakles eventually forces him to reach out his hand to the woman and finally to look at her. “ Such a wonder unhoped-for!” (1123) exclaims the king, who fearfully hopes that this is not “ some phan­ tom from the underw orlds” (1127). It is only after Admetos has agreed, however reluctantly, to touch the woman that he can look at her and then recognize her. The legend, which could be termed an expression o f a collective human dream , tells of a m ourner’s reunion with the deceased. And attempts at such contact consistently recur in the dreams o f the bereaved. Unlike Admetos, however, dreaming mourners usually recognize the deceased immediately. “ I knew ,” wrote Dickens o f his dream of his beloved, "that it was poor M ary’s spirit.” 13 “ M ethought,” Milton begins. If we have forgotten that he was blind when he wrote this poem, the “ fancied sight” o f line 10 reminds us, and if there is a hint of uncertainty in the first line, it concerns the seeing and not the “ saint.” The identification is, after all, a modern scholarly problem: Milton knew his “ saint,” took her identity for granted, and chose to focus the sonnet on his experience and the feelings that it evoked. In the “ person” —a term that could indicate a play on w ords,14 re­ calling the persona, not only a character in a play but also the mask worn in the ancient theatre—the mourner finds “ love, sweetness, goodness.” Certainly the figure is idealized, and a waking mourner who perceives the deceased in this manner may be sublimating hostility by splitting the person’s im age.15 But this figure, this p er­ sona, the ritually purified Alcestis, appears as one beyond per­

194

SUFFERING

sonality and even recalls and suggests “ Bright effluence o f bright essence increate” (PL 3 .6 ).16 The veil, not worn by W estern brides in M ilton’s day, wraps the face in mystery and ties the later lines o f the poem back into the Alcestis allusion. And yet, perhaps because it hides the physical characteristics, it reveals spiritual ones to that sight which is “ fan­ cied” both because o f the poet’s blindness and because o f its belong­ ing to the eye o f fancy, or imagination. Because veiled figures do appear frequently in dream s, Jungians find in them a manifestation o f the collective unconscious, terming them Animae/Animi.17 For Milton and his contemporaries, however, “ Anima” meant the human soul, which a long-standing devotional tradition, based on the Biblical Song o f Solomon, had called the Bride o f C hrist.18 To Renaissance humanists, the veiled woman was the Rational Soul. The painter and engraver Nicolas Poussin had included a similar figure in his frontispiece for a 1642 Bible, and here the image represents mystical understanding o f Scripture. H ere, then, are ad­ ditional associations “ condensed” along with the Alcestis figure and the purified woman into the dream vision. The poetic image is, o f course, both a bride and a rational soul, and Milton certainly con­ nects it with the understanding o f Scripture. But these are background elements, associations conjured up by the veiled woman. The poet recounts his dream-vision, offers us his grief and sorrow, and permits, even invites, us to participate in it with him. This is a poem about the loss o f a flesh-and-blood wife, about genuine human bereavement. This is no place for allegory, and if such associations as Anima come to our minds, they are en­ richments rather than hidden meanings. No “ system” is required to make comprehensible this statement about human love, loss, and longing. And perhaps it is embarrassment at this fact that has led many commentators to emphasize philosophical and theological elements in this sonnet at the expense o f the human ones.19 M ourners’ attempts at contact with the dream figure are seldom successful, as a typical statement indicates: “ 1 dreamt he was run­ ning away and 1 wanted to catch him .” “ I never get any contact,” reports another m ourner.20 M ilton’s wife also flees from him, actu­ ally because he awakens, but only after she has bent to embrace him. Such an attempt is usually the culmination o f the m ourner’s dream , followed by sudden waking and a sense o f dismay, a feeling that gives Admetos’ “ for sweet it is” a stabbing dose o f irony. The

Elizabeth K. H ill

195

king’s clasping o f the hand o f the returned Alcestis is both prere­ quisite to and earnest o f her actual restoration to him. But for the dreamer, the angst of awakening, the realization that it was just a dream, can bring back an excruciating night. Solace, is it not More sad and mournful than the grief it soothes? One that by mitigating aggravates And by recalling ever and again The memory o f my anguish, needs must cause My closing wounds to rend and bleed anew?21 Milton might also have recalled these lines, although in their orig­ inal Latin, by the sixteenth century Scottish poet George BUchannan. Indeed, perhaps they sum up the painful irony o f his own use of the Alcestis legend, which consoles him in his dream only to cause him additional suffering upon awakening. The Greek tale is rather like the vista within an Easter egg, a world within the sonnet which expands the one o f the poem. The illusion painfully underlines a uni­ versal aspect o f human suffering, the loss after believed attainment, the joy that is illusion. The simile is much like the White Rabbit’s hole, a small opening leading into another universe, one o f the mo­ tions of the soul longing for one dearly beloved but never again to be seen in this mortal life.

REFERENCE NOTES 1. This dispute, as well as other points of critical controversy, is well sum m arized, with relevant bibliography, in A .S .P . W oodhousc and D ouglas Bush, A Variorum Com mentary on the Poems o f John M ilton (N ew Y ork: C olum bia, 1972), 2 , 486-99. 2. Fitzroy Pyle, "M ilto n ’s Last Sonnet A g ain ," Review o f English Studies, ns. 2 (1951), 152. 3. it is not feasible to give a com plete discussion o f M ilton's views on and experiences with m arriage here. An excellent rcccnt discussion o f the subject is Edw ard Le Com te's M ilton an d Sex (N ew Y ork: C olum bia, 1978). 4. A G rie f O bserved (London:Faber and F aber, 1961), 47. 5. John Bowlby, Attachm ent an d Loss, 3, Loss, Sadness, an d D epression (New York: Basic Books, 198), 85-96. 6. Daniel C. D ennct, " A rc D ream s Experiences?" in Philosophical Essays on D ream ­ ing, cd. E.M . Dunlop (Ithaca: C ornell, 1977), 233. Rcccnt w ork by Francis C rick , G raem e M itchison, and the late Christopher Evans, as reported by Daniel G olem an, “ Do D ream s Really Contain Important Secret M eaning?” N ew York Tim es, 10 July, 1984, sec. 3 , p. 1, cols 3 ,4 , p. 12, cols 3-6, appears to challenge traditional views o f the significance o f dream s rather than the m echanics o f the proccss. As this article goes to press, E v an 's posthumously

196

SUFFERING

published Landscapes o f the Night: How and Why We Dream (New York: Viking, 1984) has not yei been available 10 me. 7. The Interpretation o f Dreams, trans. and cd. James Strachey (New York: Basic Books, 1955), 505. 8. In 1634 Milton had purchased the Geneva, 1602, Greek text, published by Paulus Stephanus, of Euripides' works. 9.- Euripides does not give the reason for Admetos' doom. Apollodorus the Mythographer, writing during the first century, B.C., states that he had incurred the wrath of Artemis by his failure to sacrifice to her on his wedding day. The Library o f Greek Mythology, trans. with notes and indices by Keith Aldrich (Lawrence, Ka.: Coronado Press, 1975), 19-20. 10. This bargain may be an expression of a widespread primitive belief that a person’s life can be lengthened by the addition of time taken from someone else’s life. 11. "Herakles” is a more accurate transliteration than the more familiar "Hercules." 12. Translations from the Greek are my own. 13. Quoted by Edward Le Comte, "The Veiled Face of Milton’s Wife,” Notes and Queries 199 (1954), 245. 14. Le Comte, A Dictionary o f Puns in Milton's English Poetry, restricts his remarks on this term to Paradise Lost. 15. Karl Stern, Gwendolyn Williams, and Miguel Prados, “ Grief Reactions in Later Life," in Death-. Interpretations, ed. Hendrick M. Ritenbeck (New York: Dell, 1969), 284-84. 16. This apostrophe is actually addressed to holy Light. 17. Carl G. Jung, “ Individual Dream Symbolism in Relation to Alchemy,” in Collected Works, trans. R.F.C. Hull, 2nd ed. (New York: Bollingen-Pantheon, 1968), 12, sec 65. 18. Elizabeth K. Hill, “ The Sacred Epithalamion: the Song of Songs in Seventeenth Century English Poetry,” Diss. Columbia 1966 discusses the background of this poetic tradi­ tion and its use. 19. An outstanding example of this tendency is John S. Colaccio's "A Death Like Sleep: the Christology of Milton's Twenty-Third Sonnet," Milton Studies 6 (1974), 181-97. 20. Geoffrey Gorer, Death, Grief, and Mourning (Garden City; NY: Doubleday, 1957), 55. 21. Translated by Martin Mueller in The Children o f Oedipus and Other Essays on the Imitation o f Greek Tragedy (Buffalo, NY: Univ. of Toronto Press, 1980), 171.