La cronicità. Come prendersene cura, come viverla 8849006500, 9788849006506

Table of contents :
Foreword to the Italian Edition
Preface
Health, Like Nature, Is Imperfect
A Conversation About Chronicity
Contents
About the Author
1: Stories from a World Where Everyone Can Enter, and Where Many Already Reside
References
2: Chronic/Acute: Two Opposite Scenarios?
References
3: The Burden of Chronicity
Reference
4: The Strain of Being Chronically Ill
References
5: The Strain of Treating Chronic Patients
References
6: How to Treat the Sick and, Above All, Where?
References
7: The Rainbow of Places of Care Disrupted by the Covid-19 Pandemic
References
8: The Epidemiological Shift from Acute to Chronic in India
References
9: Asthma Can Be Lethal (But It is Also Possible to Live With It)
References
10: Education as Therapy: A History of Failure?
References
11: Primary Care, Incremental Care and Initiative Anticipatory Healthcare
References
12: Chronic Meets Chronic (When Doctors are Dangerous)
References
13: Chronic Seeks Chronic: The Opportunities of Web 2.0
References
14: The Decline of Chronic Illness Towards the End of Life
References
15: If Chronic Illness Works with Palliative Care
References
16: In the Spotlight or Behind the Scenes?
References
17: Conclusion
Reference
Index

Citation preview

Chronicity Treating and coping Dagmar Rinnenburger

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Chronicity

Ginkgo biloba This leaf from a tree in the East, Has been given to my garden. It reveals a certain secret, Which pleases me and thoughtful people. Does it represent One living creature Which has divided itself? Or are these Two, which have decided, That they should be as One? To reply to such a Question, I found the right answer: Do you notice in my songs and verses That I am One and Two? Johann Wolfgang Goethe (1749–1832)

Dagmar Rinnenburger

Chronicity Treating and coping

Dagmar Rinnenburger Specialist in Pulmonary Medicine and Allergology Hospital San Camillo Forlanini Private Praxis Rome Italy

Based on the translation from the Italian language edition: La cronicità. Come prendersene cura, come viverla by Dagmar Rinnenburger Copyright © Il Pensiero Scientifico Editore 2019. ISBN 9788849006506. The translation was done with the help of artificial intelligence (machine translation by the service DeepL.com). A subsequent human revision was done primarily in terms of content. Image on page ii: Ginkgo biloba © iStock by Getty Images ISBN 978-3-030-66872-3    ISBN 978-3-030-66873-0 (eBook) https://doi.org/10.1007/978-3-030-66873-0 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2019, 2021 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Foreword to the Italian Edition

Jane Ellen Brody was born in New York in May 1941 and is an established science journalist for the New York Times, where she has been editor of a weekly column entitled ‘Personal Health’ since 1976. I came across one of her articles (dated March 2, 2015) almost by chance, attracted by the difficulty I had in understanding the title: ‘Healthy in a Falling Apart Sort of Way’ [1]. I had to ask an English friend of mine who lives in Florence to help me understand the sense of the title. This is how the article begins: When asked on a medical form to evaluate my overall health, I invariably check “healthy”. But I sometimes wonder how accurate that is. After all, I do have arthritis that necessitated a double-knee replacement 10 years ago, and I find it increasingly difficult to open containers designed to thwart a 2-year-old. My spine is a mess, and my back hurts from time to time. I have tinnitus and some hearing loss in one ear. I was treated for breast cancer 16 years ago. I take a statin to lower a cholesterol level that defied conservative measures of diet and exercise. And I constantly have to practice remembering people’s names. So, at nearly 74, how healthy am I? Well, I also walk three miles and swim three-quarters of a mile nearly every day. I’ve taken over most of the chores my late husband once did. I shovel and sweep my walk, cook most of my meals, and care for an active Havanese puppy who’s walked four times a day and runs free in the park every morning. I have yet to retire and still work part time writing a weekly column, though I’ve resisted the temptation to write another book, choosing instead to enjoy more theatre, opera, concerts and grandchildren, and to train the puppy to be a therapy dog. This premise serves to get to the point: what exactly is health? When can we consider ourselves healthy? Brody recalls how in 1948 the World Health Organization (WHO) defined health as ‘a stage of complete physical, mental and social well-being’. She then added: ‘By that definition, I and millions of Americans like me across the age spectrum would flunk’ although ‘most people, like me, are aging with chronic ailments and disabilities, yet they continue to function independently’. At this point Brody quotes one of the most important articles on the definition of health: ‘How should we define

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health’, published by several (excellent) authors in BMJ in 2011 [2]. The article is the outcome of a conference held in the Netherlands in December 2009, titled ‘Is Health a State or an Ability? Towards a Dynamic Concept of Health’. The criticism of the WHO definition of health set out in the article mainly concerns the adjective ‘complete’. The term is, in fact, influenced by the epidemiological context and the ‘optimism’ for medicine of the period—at the time acute (mostly infectious) diseases prevailed, while some of the most important drugs (such as antibiotics), capable of delivering ‘complete’ recovery, were starting to appear in clinical practice. Seventy years after the mythical year of 1948, the world has profoundly changed, also from a demographic and epidemiological perspective. The article in BMJ states that the characteristics of diseases have changed also as a result of public health measures which have improved nutrition and hygiene conditions, and made healthcare services more effective. However, the number of people living with chronic diseases has increased worldwide over the decades. Today, ageing with a chronic disease has become the norm. It is for this reason that, according to the article, the WHO definition of health is counterproductive: it considers people with chronic diseases as permanently ill, thus weakening the ability to cope with the physical, emotional and social challenges that life presents. For this reason, the experts gathered at the Dutch conference supported the idea of formulating a new definition of health that would transform the static one prevailing at the time into a more dynamic one ‘based on the resilience or capacity to cope and maintain and restore one’s integrity, equilibrium and sense of well-being’. And so a new and preferred definition of health became: ‘the ability to adapt and to self-­ manage’: meaning the ability to adapt to the changes produced by ageing and by the physical, emotional and social challenges of life and to effectively manage a chronic condition. The key concept is, therefore, ‘ability to adapt’, made possible by resilience and capacity to cope. In the light of this updated definition of health, the journalist Jane Brody is certainly right to tick ‘healthy’ in questionnaires concerning her condition, despite the fact she suffers from chronicity. She is healthy because she has overcome several physical and emotional challenges (breast cancer, knee implants, the death of her husband)—which is indeed the meaning of ‘resilience’—and because she successfully copes with a number of difficult conditions (arthritis in her hands, back pain, hearing impairment and tinnitus, amnesia)—this is the meaning of ‘coping’—that do not prevent her from living a fulfilling and satisfactorily life. No doubt, Jane Brody has managed to ‘adapt’ brilliantly because she has substantial personal, social and environmental resources. In fact, the fate of a chronic patient without those resources is very different: we may imagine the case of a diabetic man who has no insurance and has to pay—if and when he can—for medical examinations, tests and drugs (this is the case of millions of people worldwide). Because of this, the inequalities that characterise the ‘static’ definition of health are actually the same, perhaps even worse, as those characterising the ‘dynamic’ one. However, it is also true that the notion of health conceived as adaptability is not entirely a new one. A 2009 The Lancet editorial, entitled ‘What Is Health?’ [3],

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quotes Georges Canguilhem, 1 a French doctor and philosopher, who published a book in 1943 entitled The Normal and the Pathological, where the concept of health is linked precisely to the ability to adapt to the environment. ‘Health is not a fixed entity. It varies for every individual, depending on their circumstances. Health is defined not by the doctor, but by the person, according to his or her functional needs. The role of the doctor is to help the individual adapt to their unique prevailing conditions’. According to The Lancet, the beauty of Canguilhem’s definition of health, of ‘normality’, is that it includes the animate and inanimate environment, as well as the physical, mental and social dimensions of human life. It puts the individual patient, not the doctor, in a position of self-determining authority to define his or her health needs. The doctor becomes a partner in delivering those needs. The Lancet concludes that: ‘Canguilhem’s definition also allows us to respond to disease globally, taking account of the context of conditions in a particular place, as well as time. (…) By replacing perfection with adaptation, we get closer to a more compassionate, comforting, and creative programme for medicine – one to which we can all contribute’. This book is about chronic diseases and coping. Coping does not refer only to patients but also to doctors and to healthcare systems, which have still not adapted to the profound demographic and epidemiological change that has taken place over the last few decades. In fact, as two well-known geriatricians observe, ‘despite living in a world dominated by chronic pathologies, in healthcare facilities the medical practise focuses almost exclusively on acute cases, and the model prevailing at the beginning of the twenty-first century is still the model of the past century’ [4]. However, it would be unfair to attribute the whole responsibility of this distortion to healthcare workers. At least as much responsibility must be attributed to policies that ignore chronicity—not only in Italy. Again, in 2005, an article in The Lancet spoke of a ‘neglected epidemic’ [5] with regard to chronic diseases, and 5 years later another article stated: ‘Global and national policies have failed to stop, and in many cases have contributed to, the chronic disease pandemic’ [6]. The Italian National Plan for Chronic Diseases [7], containing important changes to the organisation of treatment, was approved in 2016, almost 15 years after new international guidelines were published, and has not been implemented in a majority of places, also because of lack of specific funding. The author of the book, Dagmar Rinnenburger, a pneumologist and allergist, who moved (for marriage) from a clinic in the Black Forest to Italy, addresses chronicity with sensitivity and tact, and with the competence that comes from qualified clinical practice. She addresses the issue from various angles and perspectives, mostly from the patients’ point of view. There is one main question that is often raised, and that is ‘how can the quality of life of chronic patients be improved and, from the perspective of coping, what can the healthcare system do to help people to adapt to their new conditions?’ Answers to this question can be found in almost all chapters, in particular those dedicated to education in self-management and primary care (incremental medicine and initiative, anticipatory medicine). 1  Georges Canguilhem (1904-1995), medical doctor, philosopher and historian of science, taught History of Science at the Sorbonne in Paris. Among his most important works: Knowledge of Life, and The Normal and the Pathological.

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In an article titled ‘The Heroism of Incremental Care’, published in The New Yorker in 2017, Atul Gawande [8] questions the unassailable belief in the heroism of surgeons. He tells of a visit to a clinic located in a popular and multi-ethnic neighbourhood of Boston called Jamaica Plain. Here, three full-time physicians work, several part-timers, three physician assistants, three social workers, a nurse, a pharmacist, and a nutritionist. Talking to Asaf Bitton about the contrast between his work and mine I made the mistake of saying that I had more opportunities to make a clear difference in people’s lives. He was having none of it. Primary care, he countered, is the medical profession that has the greatest over-all impact, including lower mortality and better health, not to mention lower medical costs. Asaf is a recognised expert on the delivery of primary health care around the world, and, over the next few days, he sent me evidence for his claims. He showed me studies demonstrating that states with higher ratios of primary-care physicians have lower rates of general mortality, infant mortality, and mortality from specific conditions such as heart disease and stroke. The clinic in Jamaica Plain totals some 14,000 examinations a year. At any given moment, a physician or nurse might be assessing a geriatric patient, or stabilising a patient who’s had an asthma attack, suturing a laceration, lancing an abscess, aspirating a gouty joint, managing a bipolar-disorder crisis, biopsying a suspicious skin lesion, placing an intrauterine contraceptive device. They run a medical store. But, Asaf insisted, that’s not really how primarycare clinicians save lives. After all, for any given situation specialists are likely to have more skill and experience, and more apt to follow the evidence of what works. Generalists have no advantage over specialists in any particular case. Yet, somehow, having a primary-care clinician as your main source of care is better for you. Asaf tried to explain. ‘It’s no one thing we do. It’s all of it,’ he said. I found this unsatisfying. I pushed everyone I met at the clinic. How could seeing one of them for my—insert problem here—be better than going straight to a specialist? Invariably, the clinicians would circle around to the same conclusion. ‘It’s the relationship,’ they’d say. I began to understand only after I noticed that the doctors, the nurses, and the front-desk staff knew by name almost every patient who came through the door. Often, they had known the patient for years and would know him for years to come. In a single, isolated moment of care for, say, a man who came in with abdominal pain, Asaf looked like nothing special. But once I took in the fact that patient and doctor really knew each other—that the man had visited three months earlier, for back pain, and six months before that, for a flu—I started to realise the significance of their familiarity. For one thing, it made the man willing to seek medical attention for potentially serious symptoms far sooner, instead of putting it off until it was too late. There is solid evidence behind this. Studies have established that having a regular source of medical care, from a doctor who knows you, has a powerful effect on your willingness to seek care for severe symptoms. This alone appears to be a significant contributor to lower death rates. Observing the care, I began to grasp how the commitment to see-

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ing people over time leads primary-care clinicians to take an approach to problem-solving that is very different from that of doctors, like me, who provide mainly episodic care. (…) The generalists at Jamaica Plain are incrementalists. They focus on the course of a person’s health over time—even through a life. All understanding is provisional and subject to continual adjustment. They address a patient’s specific problem always considering his or her living situation, family history, nutrition, stress levels, and how these interrelate. ‘Success, therefore, is not about the episodic, momentary victories, though they do play a role. It is about the longer view of incremental steps that produce sustained progress’. In the chapter dedicated to the conclusions and proposals (‘If I were a powerful politician…’), Dagmar Rinnenburger writes: ‘The reflections I have developed are intended to help us take a glance at what happens behind the scenes of an imagined healthcare, and to serve as a provocation to start thinking seriously about human lives in which health is increasingly combined with chronicity’. She adds: ‘I would revolutionise general medicine, making it the pivot of change; I would set up teams of General Medicine composed of physicians, nurses, physiotherapists and perhaps also psychologists, I would create small centres in the neighbourhoods, accessible to all’. A proposal that I agree with completely. References 1 . Brody JA. Healthy in a falling apart sort of way. The New York Times. 2015. 2. Huber M, Knottnerus JA, Green L, et  al. How should we define health? BMJ. 2011;343:d4163. 3. Editorial. What is health? The ability to adapt. Lancet. 2009;373:781. 4. Rozzini R, Trabucchi M. Sanità e condizioni di salute delle persone affette da malattie croniche in tempo di crisi. In: Gensini GF, Nicelli AL, Trabucchi M, Vanara F (eds). Rapporto Sanita 2013. Bologna: Il Mulino; 2013. p. 197–212. 5. Horton R. The neglected epidemic of chronic disease. Lancet. 2005;366:1514. 6. Geneau R, Stuckler D, Stachenko S, et  al. Raising the priority of preventing chronic diseases: a political process. Lancet. 2010;376:1689–1698. 7. Ministero della Salute. Piano Nazionale della Cronicità, Accordo tra lo Stato, le Regioni e le Province Autonome di Trento e di Bolzano. 2016. http://www. salute.gov.it/imgs/C_17_pubblicazioni_2584_allegato.pdf. Accessed Apr 2019. 8. Gawande A. The heroism of incremental care. New Yorker. 2017. Florence, Italy Gavino Maciocco

Preface

Health, Like Nature, Is Imperfect Lose something every day. Accept the fluster of lost door keys, the hour badly spent. The art of losing isn’t hard to master. Elisabeth Bishop One Art

A Conversation About Chronicity A conversation between polite people starts with a presentation. And this conversation will be about chronicity. I am a doctor and I am from Germany. In my home country I specialised in respiratory and allergy diseases, and I treated asthma in ‘The Black Forest Clinic’, also working on phthisiology and pulmonary oncology. I moved to Italy in 1991, not because I was attracted by the light and beauty of the ‘land where the lemon-trees bloom’ as Goethe wrote in Wilhelm Meister’s Apprenticeship, but for love. I have lived in Italy ever since. It took me a few years to settle in professionally, I got a job first in a rehabilitation centre and then in a Roman hospital, where I still work. All my professional life has revolved around chronicity and the changes that await those who enter this ‘territory’. Not unlike what happens to us when we go abroad, also on entering the country of chronicity one may feel lost, and very often, while trying to get used to a new situation, we cling to preconceived ideas. I too have experienced this, and being German, I have at times felt I was being treated as a foreign ‘body’ (everybody knows that Germans never complain about the cold weather, because they’re used to it; they’re rigid, they dress badly and they eat even worse). However, I have also benefited from prejudice. Because, even though we are known to be rough and rigid, even though we dress badly, we can also be serious, timely, tidy, informed and reliable, and these positive aspects, prejudicially attributed to the Germans, are helpful when dealing with illness. I have also been the subject of unpleasant judgements that were meant to be positive, like when a person came into my office and exclaimed it was the office of a modern Nazi. It was a very wealthy American xi

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lady who lived between Rome and Germany; she said she liked me as a doctor because Italians, who excel at ruining their national treasures instead of preserving them, are Untermenschen, inferior human beings. Following this remark our relationship deteriorated. During subsequent visits I noticed the onset of cognitive impairment, which I like to think was the cause of her racist comment. Indeed, I cannot deny that in my medical career I have been chosen not only on the basis of my resume or because patients thought I was a good doctor, but also simply for being German. This prejudice goes hand in hand with another one, which perhaps is more similar to an expectation, or to magical thinking. Because people tend to think I am a serious person before they even get to know me, it is clear that I must solve their problems: like Harvey Keitel in the role of Mr. Wolf (also this is a German word that means ‘wolf’) in Quentin Tarantino’s Pulp Fiction, when he makes his entrance announcing: ‘I am Mr. Wolf, I solve problems’. Who remembers the film knows how these problems are solved: Mr. Wolf can make corpses disappear and bloodstained cars shine like new. What one expects of a medical doctor is decisive action, but this can be the case only with a limited number of problems, such as, for example, pneumonia: antibiotics, rest and checks are all is needed, before everything goes back to normal. But with asthma, chronic obstructive bronchopneumopathy, with respiratory failure and many other conditions, as a doctor all I can do is carefully accompany my patient and provide some necessary adjustment, adopt a series of measures to prevent aggravation or exacerbation. I can’t be a Mr. Wolf who solves everything, and those seeking my professional help with this kind of expectation will inevitably be disappointed. We all want to go back to the way we were before the onset of an illness and a ‘good’ doctor is supposed to be able to bring about what was once called restitutio ad integrum. Returning to the state that preceded illness is actually possible only in rare cases, in fact, generally what the majority of us must deal with is a chronic problem. I keep telling my patients that ‘chronic’ means learning how to live with that problem, that things will get better, that in some cases it will even be possible to suspend the therapy: but when a problem is chronic, it will inevitably represent itself. Aggravation can be avoided by increasing one’s awareness and by forming a solid relationship with those who are competent and know about the illness, avoiding ‘doctor shopping’, that is, doing the rounds of internationally renowned specialists or seeking those who offer alternative treatments. How much money would be saved if everyone understood and adopted the paradigm of chronicity? How many disappointments and how much suffering would be spared by seeking true competence? It makes no difference if a doctor is Italian, African, American or… German. In order to address the treatment of illnesses that cannot be simply wiped out, we must deal with our prejudices against chronicity. It is important for us doctors because every now and then we like to play the part of Mr. Wolf. It is also essential for patients because, when a health problem cannot be solved completely, a person’s identity is permanently affected. This does not mean that a person should consider him or herself as being an ‘asthmatic’ or ‘diabetic’, rather, it means a person should view him or herself as a person who must learn how to live with a problem, be it big or small.

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To summarise the different possible attitudes towards chronicity, we may think of two opposite approaches. The first one sounds like ‘let’s hope it’s chronic’. I heard a woman say this once, after an examination that she’d requested because she wanted a second opinion. She had already been to an oncologist and had doubts about the chemotherapy treatment she was receiving. After carefully examining all the documentation she presented, the expert she was consulting said, ‘I think your tumour may very well become chronic’. She was comforted, she told me about the examination and about her wish to enter the territory of chronicity. The episode came to mind while reading a book, an autobiography that sold quite well, in which the journalist Alessandro Milan describes his wife’s illness: Mi vivi dentro (You live inside me) [1]. She had a carcinoma which, following the first treatments, became metastasised. There is a scene that takes place in the doctor’s office, where, sadly, she learns about the metastasis and is told about the possibility of undergoing experimental therapy: ‘Look, doctor…’ The oncologist stopped typing and turned round. ‘Yes, I’m listening’ ‘If this treatment works, the metastases … Well, in short, could they disappear?’ ‘Unfortunately this is not possible. If things go well, we will be able to keep them under control. But we won’t be able to go back to how things were before they appeared, if that’s what you mean.’ This is exactly what Franci meant. And so, she could no longer recover from cancer. These were not the ‘pebbles’ that had been removed from her breast, again and again, with the hope, at some point, that they had been removed for good. Now the tumour was inside her. Forever. It had become widespread, and could no longer regress to its previous state. The best that could be done was, in technical jargon, render it chronic. Live with it. Keep it there, under control, respect it like an unwelcome guest inside her body, without becoming friendly, especially without ever giving it more room. I imagine the opposite of chronicity as a condition one has to live with as a very different conversation between two friends in their fifties. Paolo is slightly overweight, his father has just died of a heart attack. The other man, Pietro, is physically very fit, although a little stressed because of work; he runs eight kilometres a day. The two friends never talk about their health or their conditions. However, one day Paolo timidly asks Pietro: ‘Are you chronic? I mean, do you have any problem that forces you to take a tablet every day?’ Pietro hesitates: ‘Me? chronic? Not at all! I had gout a few years ago and I take something to lower my uric acids; I should also take a pill for my blood pressure, but I try to keep everything under control by jogging’. Paolo confesses that he takes a pill for his blood pressure, because he wants to prevent a heart attack like the one that killed his father. Eventually Paolo tries to enlist his reluctant friend among those who suffer from a chronic condition: ‘Come on, Pietro: just take the pill, it’ll help prevent bad things from happening, as much as possible’.

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When chronicity is also multimorbidity things are different. I remember Mr. Fernando, 48, he entered the clinic one afternoon, carrying a folder, not a very thick one; when I asked how I could be useful, he answered: ‘Well, I’m complicated’. He presented his clinical situation in a very concise way, an indication he had told his story many times: ‘I have been diabetic since the age of six; now I need to undergo dialysis because of my kidneys; I can’t see very well because I have retinopathy; I have polyneuropathy; I used to smoke—alas—and because of coronary problems I have two stents. Of course I am hypertensive, and smoking has left me with chronic bronchitis. A few years ago I had anxiety attacks at night, and it turned out I have sleep apnea: it’s severe, more than a hundred episodes per hour. I wasn’t able to cope with this, it was impossible for me to wear the mask at night. I lost weight and the apnea greatly improved. I also suffer from gastroesophageal reflux and for this reason I sleep with my back raised’. I asked whether he had decided to re-evaluate his respiratory situation and he replied that was the case, in fact, he was being tested to be put on the transplant waiting list, possibly kidney and pancreas in a single operation. I hesitated a little before asking whether he had a job, I was about to ask him if he had one in the past, because I found it difficult to believe that it was possible to work and manage all these problems at the same time. He replied rather abruptly: ‘Of course, doctor; that’s why I couldn’t be here before 5:00 pm’. After I’d tested his respiratory function, when the examination was over, he added: ‘I forgot to say that I am also celiac’. He realised that I was about to laugh, in disbelief; he also laughed: yes, fate had not been kind to him. Chronicity is a very varied world, it includes mild conditions and situations of unprecedented complexity. We all grow old and become ill: this is the human condition—unless a violent or premature death interrupts our life before that. But we struggle to accept this. Firstly, it is difficult to see and feel oneself ageing: we work on our appearance and hide the substance, because it is painful. Often the regular intake of a medicine is a metaphor that symbolises entry into the realm of ageing, the constant need for ‘adjustments’. It is hard to accept this transition, especially when we cannot come to terms with our being finite. People live longer lives, but the years of well-being have not grown longer: old age has been extended, together with its many chronic problems. Dino Buzzati spoke about this [2] in a poetic way using the metaphor of a regiment that leaves at dawn: Everyone is given notice, more or less in advance, which sometimes is hours, or days, sometimes months or even years: there are no exceptions. The fact is, hardly anyone realises it. In fact, in the majority of cases the announcement is not an explicit one, such as a call to arms, but consists in small signs that can be easily mistaken for random events that are have no meaning. But above all because men savagely loathe the idea of their fatal destiny, they are capable of formulating the most absurd thoughts to deny the premonitory evidence and live as if each one of them, by mysterious privilege, were spared the universal law.

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Here chronicity is the preparation made by the regiment that leaves at dawn, that leaves anyway. Chronicity involves both hope and doom, it has a thousand intermediate facets. It is a quest in search of the best attitude: it is a challenge for doctors, citizens and healthcare organisations. It will be the topic of our conversation. References 1 . Milan A. Mi vivi dentro. Milan: DeA Planeta; 2018. 2. Buzzati D. Il reggimento parte all’alba. Milan: Henry Beyle; 2018. Rome, Italy

Dagmar Rinnenburger

Contents

  1 Stories from a World Where Everyone Can Enter, and Where Many Already Reside������������������������������������������������������������   1 References����������������������������������������������������������������������������������������������������  10   2 Chronic/Acute: Two Opposite Scenarios? ����������������������������������������������  11 References����������������������������������������������������������������������������������������������������  16   3 The Burden of Chronicity ������������������������������������������������������������������������  17 Reference ����������������������������������������������������������������������������������������������������  20   4 The Strain of Being Chronically Ill����������������������������������������������������������  21 References����������������������������������������������������������������������������������������������������  24   5 The Strain of Treating Chronic Patients��������������������������������������������������  25 References����������������������������������������������������������������������������������������������������  31   6 How to Treat the Sick and, Above All, Where? ��������������������������������������  33 References����������������������������������������������������������������������������������������������������  37   7 The Rainbow of Places of Care Disrupted by the Covid-19 Pandemic������������������������������������������������������������������������  39 References����������������������������������������������������������������������������������������������������  49   8 The Epidemiological Shift from Acute to Chronic in India ������������������  51 References����������������������������������������������������������������������������������������������������  57   9 Asthma Can Be Lethal (But It is Also Possible to Live With It)������������  59 References����������������������������������������������������������������������������������������������������  65 10 Education as Therapy: A History of Failure? ����������������������������������������  67 References����������������������������������������������������������������������������������������������������  71 11 Primary Care, Incremental Care and Initiative Anticipatory Healthcare��������������������������������������������������������������������������������������������������  73 References����������������������������������������������������������������������������������������������������  79 12 Chronic Meets Chronic (When Doctors are Dangerous) ����������������������  81 References����������������������������������������������������������������������������������������������������  86

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13 Chronic Seeks Chronic: The Opportunities of Web 2.0 ����������������������   87 References��������������������������������������������������������������������������������������������������   92 14 The Decline of Chronic Illness Towards the End of Life����������������������   95 References��������������������������������������������������������������������������������������������������  100 15 If Chronic Illness Works with Palliative Care��������������������������������������  101 References��������������������������������������������������������������������������������������������������  107 16 In the Spotlight or Behind the Scenes?��������������������������������������������������  109 References��������������������������������������������������������������������������������������������������  113 17 Conclusion������������������������������������������������������������������������������������������������  115 Reference ��������������������������������������������������������������������������������������������������  118 Index�������������������������������������������������������������������������������������������������������������������� 119

About the Author

Dagmar  Rinnenburger  is a German physician, living in Rome since 30  years, specialised in pulmonary medicine and allergology  with a long experience in German and then Italian hospitals in the field of pulmonary medicine. She worked in respiratory rehabilitation and patient education and then in pulmonary intensive care in the San Camillo Hospital, one of the largest hospitals in Rome. In particular, she has treated patients with respiratory insufficiency caused by neuromuscular problems such as amyotrophic lateral sclerosis or end-stage COPD. Her particular attention  was given to shared decision-making in end-stage settings and she has always been interested in the improvement of communication between patient and doctor. She teaches as a guest professor in the Unicamillus Medical School and tries to focus on chronicity in the first years of medical education.

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Society ages and chronicity increases, but healthcare systems do not seem to have taken notice. Hospital beds are constantly being reduced; Italy, like other countries, faces a situation of emergency caused by the lack of nurses; territorial medicine is often in crisis; GPs cannot be reached outside surgery hours—in the evening, at night, at weekends. Also, families are increasingly smaller, and those made up of only one person are steadily increasing. Families cannot cope alone with the needs of their loved ones in difficulty, not in a world where years of non-self-sufficiency reach figures that would have been unthinkable in the past. In addition to chronic situations of disability, there is also ‘small’ chronicity: illnesses—or conditions, as we prefer to say today—such as hypertension, hyperlipidemia or diabetes caused by age and weight, which often do not cause any symptoms, but must be identified and treated to prevent more complex situations from arising. Mild bronchial asthma or chronic bronchitis can lead to real emergencies. These conditions and many others are now diagnosed better and earlier. From the moment they are diagnosed they need to be checked and require continuous adjustments; in fact, as they evolve they can become serious chronic conditions, leading to reduced autonomy. This is the case of respiratory failure, which requires long-term oxygen therapy, with or without mechanical ventilators, or the case of chronic heart failure. These pathologies are now beginning to be included in the therapeutic field of palliative care: an approach that should be intrinsic to all treatments. Sometimes the conditions we have mentioned are labelled as illnesses to be treated with drugs too early, and this favours so-called disease mongering. Healthcare systems and people are exploited, and medicines are prescribed also when they are not necessary. For example many guidelines suggest to treat cholesterol or blood pressure beyond an increasingly low threshold, so that a large part of the population is prescribed medicines to regulate blood lipids or blood pressure. Methodologically correct guidelines and dedicated professionals try to account for complexity, also looking at other risk factors and family history however, despite this, an anxious person will inevitably feel safer taking a pill. There is a lot of money to be made with healthy people if they are induced to act as if they were ill. This applies not © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_1

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only to pharmaceuticals but also to certain forms of screening that result in too many uncertain diagnoses. Writing in BMJ in 2002, Roy Moynihan warned that one becomes a chronically ill person without actually being ill [1]. One hypothesis is that this is also a market strategy: to increase the ability to deal with disease, chronicity and death, by attempting to make them disappear with medicine. This is one of the reasons that motivates me to write about chronicity: no one should be considered chronically ill when there is no need because this condition should be dealt with when it is really necessary. The evolution of chronicity is particularly evident in oncology. The paradigm has changed before our eyes: once the deadly disease par excellence, cancer has evolved to become a chronic disease. Sometimes it is incurable, but very often it can be cured, despite the fact it is a condition that requires frequent monitoring, treatment and therapeutic adjustments. It often causes a lot of anxiety, but fortunately in many cases today it is possible not only to survive but to continue living for a long time. Of course, there is still a long way to go to change the prevailing point of view on oncological pathologies and bring about a more serene attitude towards chronic situations. Personal attitudes differ greatly, and so do the ways of dealing with an oncological diagnosis. There are those who prepare as if they were going to war—‘I will win’—by deciding to radically change their lives: not only with regard to lifestyle or nutrition but also with radical psychological transformations, based on the belief that toxic relationships have also contributed to the onset of the illness. These are the kind of experiences that motivate people to write a book about them. There are also those who try to ‘not be present’ during treatment. I remember a man in his 40s who was diagnosed with small cell lung cancer that required chemotherapy. When he came to the hospital he had one request only: he wanted to sleep, he did not want to ‘be present’ during the infusion of chemotherapy; the treatment had a strong impact on him, he suffered from very strong nausea, and had an attitude of reject. In recent years, treatments used to combat the side effects of therapy have become more sophisticated. As doctors and nurses however we are very impressed when we enter a room where there are two patients with the same illness who are receiving the same treatment: one patient is very hungry and is eating fried chicken, the other one is sleeping, because we have granted his wish ‘not to be present’ and he has not eaten anything for 2 days. Healthcare workers have many stories about ill people and about the different ways these people cope with the awareness of their own end. It is interesting that the paradigmatic shift towards chronicity in oncology occurred because of the work carried out not only in hospitals but also at a ‘cellular’ level. ‘A new theory of cancer’ is an article by Paul Davies, a British physicist and lecturer at Arizona State University [2]. In 2008, the then director of the National Cancer Institute asked the scholar to provide another perspective on cancer research. War had been declared on cancer. In 1971, Nixon said the goal was to eradicate cancer by 1979. Today we know we are still a long way away. Survival has certainly increased, treatment is more sophisticated; however, it is not possible to speak of the eradication of cancer. Paul Davies, a physicist, responded to this invitation saying that he knew nothing about cancer, but this was the very reason why he had been

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invited to give his opinion: cancer required a completely different perspective compared to that of biologists. In short, the theory he developed argues that cancer is not the consequence of damage, but a way cells have of responding to a harmful environment. This is why the therapeutic approach needs to change its strategy and conception. His conclusion is that the search for an only treatment for cancer is not only expensive but also unnecessary. Since cancer is rooted in the very nature of multicellular life, the best way to manage and control it (not exterminate it) is to challenge it with physical conditions that are hostile to its atavistic lifestyle. It is indeed necessary to change the culture of cancer, abandoning the path of fierce war and accept it as a chronic disease. We must not destroy it, but simply prevent it from destroying us. Only by better understanding its place in the general context of evolutionary history can we truly have an impact on life expectancy. However, it seems that the national health systems are behind in taking note of the profound change taking place in the world of illness. The only indication that some attention is being given to the problem of chronicity in Italy is the National Chronicity Plan [3] drafted in 2016 and based on the Chronic care model [4] developed in the early 1990s in the United States. The plan provides for guidelines, a list of main critical issues in the area of assistance, the definition of general and specific objectives, proposals for intervention strategies and for the monitoring of some chronic illnesses. It is a healthcare model that intends to address the increase of chronicity, which therefore presents different requests to the national healthcare system compared to the past. The objectives of the Plan are explicitly formulated as follows: The National Chronicity Plan was born out of need to harmonise activities in this field at a national level, proposing a document, shared with the Regions, which, compatibly with the availability of economic, human and structural resources, identifies a common strategic plan intended to promote interventions based on a unitary approach, person-centred and oriented towards a better organisation of services and full responsibility of all actors involved in assistance. The aim is to contribute to improve protection for people affected by chronic diseases, reducing the burden on individuals, their family and the social context, improving the quality of life, making healthcare services more effective and efficient in terms of prevention and assistance and ensuring greater uniformity and equity of access to citizens. At the moment the Italian National Chronicity Plan includes the following illnesses: –– chronic kidney disease and kidney failure; –– chronic rheumatic diseases: rheumatoid arthritis and chronic arthritis in childhood and adolescence; –– chronic intestinal diseases: ulcerative rectocolitis and Crohn’s disease; –– chronic cardiovascular disease: heart failure; –– neurodegenerative diseases: Parkinson’s disease and Parkinsonisms; –– chronic respiratory diseases: COPD and insufficiency respiratory;

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respiratory failure in childhood and adolescence; asthma in childhood and adolescence; endocrine diseases in childhood and adolescence; chronic kidney diseases in childhood and adolescence.

Some have criticised the plan. So far only some Regions of the country have responded; no resources at all have been allocated: it is very hard to carry out a plan that entails a profound reorganisation of the healthcare system at a territorial level in times when resources are lacking everywhere and all projects are carried out with difficulty. If we move from healthcare policies and look at daily life, we realise that chronicity in the homes of people goes beyond the conditions mentioned in the plan, because it exceeds the list of pathologies accounted for. We may consider, for example what happens in the field of mental health. Most of the cases followed by psychiatrists are chronic conditions and psychiatric patients weigh almost exclusively on the shoulders of their families thus causing other chronic conditions to arise due to the psychological and physical effort required of caregivers, those taking care of people who will never regain their mental health. People suffering from a mental disorder often refuse help, they do not want to be treated in a mental health centre: either because they do not recognise the illness as such, or because they suffer from a form of addiction. Homes are often the only places where chronicity of this kind is dealt with. Furthermore, eating disorders play an increasingly important role in chronicity, starting with obesity, which has an impact on the bone structure which is often already compromised by ageing, especially in women. Excessive weight stresses the heart and lungs and may lead to night mechanical ventilation, necessary for both sleep apnea and hypoventilation syndrome, which are often complicated by chronic bronchitis. The reduction of obesity has been identified by the World Health Organisation as one of the strategies to prevent chronic diseases. What about anorexia? Today the anorexic patients of the 1970s are ageing, they are subject to early deterioration caused by years of lack of food and essential nutrients, such as vitamin B, indispensable for the nervous tissue. Progress in paediatrics has allowed premature babies that would certainly have died in the past to survive. Unfortunately, we cannot prevent these premature babies from growing up with a series of problems, particularly when their weight at birth is lower than 1500 g: about 10% of them will suffer later in life from conditions that will have to be followed, such as paralysis, bronchodysplasia, blindness or deafness. However, it is also true that many chronic diseases that arise in childhood today are diagnosable and treatable, even though often they cannot be healed: we may think of asthma, diabetes, infantile paralysis, cystic fibrosis, some forms of cancer, sickle cell anaemia or AIDS. In this regard, also among children, a change of scenario can be observed, as the prevalence of infectious diseases has given way to a prevalence of chronic conditions. Based on the definition of chronic illness, between 13 and 27% of children are affected, and often this condition continues into adulthood [5]. It is not uncommon today to see young adults with a cerebral palsy in the surgery of a pneumologist.

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• Paolo is 23 years old. He is brought to the clinic by his parents, helped by a caregiver. He is confined to a wheelchair, he is not able to sit up on his own. As far as it is possible to say, he is thin and very tall; he suffers from spastic tetraparesis caused by a traumatic birth and has suffered from various episodes of pneumonia. • His parents say they are desperate: they no longer know how to deal with Paolo’s continuous coughing, often accompanied by high fever. I ask them about his eating. As often happens with neurological diseases of this type, there is a swallowing disorder. Paolo has difficulty keeping his head upright, it is often tilted backwards; his cough reflex is reduced and food often goes sideways and into his airways, causing aspiration pneumonia. His parents know this. I have them talk to a speech therapist specialised in swallowing disorders who gives them some advice on his posture and on how to thicken food. However, they are aware that this is probably not enough. From a technical point of view, Paolo needs a percutaneous entrogastrotomy: a tube inserted directly into his stomach to feed him with artificial food; as for his respiratory insufficiency, caused by secretions he cannot manage, what would be needed, again from a technical point of view, is a tracheotomy. I tell his parents this and they answer that they are aware, but his mother adds: ‘You know doctor: I am very fond of my son, I know it might seem hard to believe, but he communicates with me: he makes sounds and I understand if he is happy or in pain. A tracheotomy would make this communication impossible. How would we manage him when he is agitated, with a tube in his stomach and one in his throat?’ She is absolutely right: the only solution would be heavy sedation. They know that aspiration pneumonia could be fatal; they love their son, they want him to live, they know what medicine can offer from a technical point of view, but during our conversation it becomes clear that they do not want to opt for invasive interventions—and neither do we ‘specialised technicians’—which would cause suffering and lead to sedation. We agree we must try as best we can to use conservative treatments: thickened food, a posture that is as correct as possible, a cough machine (a machine that allows to fluidify secretions), the help of a speech therapist and antibiotics when needed. The ‘problematic’ newborn babies of the past survived in intensive care; they became adults with the help of technology, thanks to ventilators and other prostheses. Paediatricians rightly claim they are no longer their responsibility. Some chronic scenarios present a high degree of complexity, often involving considerable technical difficulties, which would have been unthinkable just 20 years ago. All areas of specialisation have a list of chronic conditions. Alternatively, we can look at symptoms. People with pain or dyspnoea: this is the model proposed by modern palliative care, which goes beyond the classification of individual pathologies [6]. So what defines a chronic condition? Do we feel it, do others tell us or is it simply age? Most people over 60 take a pill to reduce blood pressure, levels of cholesterol or of sugar in the blood or to keep other ailments under control: should they all

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be considered chronically ill because of this? A large number of people have one or more pathologies to cope with. There is also talk of chronicity ‘clusters’, such as metabolic syndrome, characterised by hypertension, hyperlipidaemia, diabetes and increased abdominal fat, often complicated by diabetes and cardiovascular disease. Often people who have had a tumour or a myocardial infarction also have high blood pressure, chronic bronchitis and are depressed. Today, the prevailing approach to a person suffering—as we say—from polypathologies is the fragmentation of treatment in many different settings, which translates into a number of medical exams, which are often disconnected. ‘Old age is a massacre’, Philip Roth wrote in Everyman, [7] and the title of the book is a reminder of the fact that sooner or later we must all witness our physical decay and that of the ones closest to us. ‘Everyman’ means every and each one of us. Chronic diseases and conditions are part of our lives. Oliver Sacks, on the other hand, expressed himself in a more poetic way: he wrote of the ‘horror and wonder’ that are hidden, so to speak, behind the surface of health [8]. The meaning is the same: this is the place where every one of us will eventually arrive, even if we persist in not wanting to accept it—like Winston Churchill in the television series The crown (Fig. 1.1). Let us now ask ourselves concretely: in our everyday life, where can we meet the chronically ill, outside our circle of relatives, friends and acquaintances? When I find myself stuck in Roman traffic jams, in the winding line of cars that takes me to Fig. 1.1  In a scene of the English television series The crown, British MPs decide to commission a portrait of Winston Churchill for his 80th birthday, painted by a famous painter. When, during the celebration ceremony, the painting is unveiled, Churchill is scandalised: he does not recognise himself. He utters one word only: ‘Cruel.’ Later his wife orders the painting to be destroyed [9]. Credit: Portrait of Winston Churchill (1954) by Graham Sutherland

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the hospital—I keep saying to myself: ‘You are not in traffic, you are traffic’—while yet another bend slows down my journey to the ward, I look around and ask myself who are these people and where are they going. We tend to think that people in cars are going to work or to school. There are those on their way to work just like me, but there are also those on their way to the hospital as user-patients: someone is going for an examination, another person might be anxiously waiting for an appointment to perform a biopsy, others might be going for yet another cycle of chemotherapy, and there are those who are going in for pre-hospitalisation before surgery. Many cannot go alone, because they are no longer self-sufficient or because they are expected to take medications or sedatives. All people are accompanied by their sons or daughters who have asked for time off and are impatient to return to work; often they are helped by caregivers. They have travelled a long way, they got up early because of traffic. They struggle to find a parking space: the parking lot for the disabled is often already full. Everything is difficult in and around the place of care, which seems to be designed for healthy and athletic people who move with agility, run up and downstairs and can avoid long waits in front of the elevators—there is always one out of order... The great morning traffic: this is one of my favourite places to think about chronicity. If we continue to fantasise, we may imagine what these people are feeling, during this hectic journey that starts in the morning. For some, the typical smell of hospitals is enough to trigger anxiety. Others are afraid of what the results might indicate. Some are angry and disappointed, they feel they have not been paid enough attention. Others are impatient and feel they are wasting their time in absurd procedures. However, many also hope they will find a solution to their problems and are both grateful and relieved. Some are disappointed because the medical staff and nurses are tired and always seem to be saying: ‘What is it now?’, while they stare at the screen. There is also the opposite feeling, a sort of joyful tranquillity that comes when people feel they are being helped, when they feel warmth and are greeted with a smile that seems to say ‘Don’t worry, I’ll take care of you’. In the chaotic Roman traffic, I imagine the home care teams travelling to the homes of chronic patients. A flow bound to increase, because the place of chronicity is not the hospital. A friend told me about a nurse in the ER who, amid the confusion, exclaimed: ‘Your mother shouldn’t be here: her condition is chronic!’ My friend added: ‘What was I supposed do?’ Her mother had a high fever, and the GP could not be reached. The woman was not eating, or drinking, and was getting dehydrated. Where else could she go? However, even though the nurse was rude, she was right: the emergency room was not the right place for the old lady, for her chronicity. Her place is where many of these cars, which contribute to increase traffic, are headed: they are local health care units that provide home care, as well as palliative care: in fact, the right place for chronically ill patients is their home. Which is where almost everyone would like to be, with the support of functioning services. The ER is meant to treat emergencies, situation of polytrauma, heart attacks, strokes, etc. Today however the ER is overwhelmed, its task has become that of sorting people who should not be seeking the services of

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this impressive emergency machine. What they actually need is a quick test or someone who is able to listen to them, as in the case of panic attacks. So why is it that we always end up in the emergency room and are often disappointed? There are various reasons: in Italy, the ER is always open, available and completely free of charge; even though people complain about having to wait for hours, the tests carried out on the spot are usually quite a lot. Apart from practical reasons, for instance, the way territorial healthcare is organised, which often makes it difficult to have results in a short time, there are more complex reasons that have to do with the history of our glorious medicine, which in our memory has become mixed up with images from TV shows. We grew up watching the news and hearing about heroic medicine, listening to stories of unstoppable progress: from pharmacological breakthroughs, such as the invention of penicillin in 1922 by Alexander Fleming, to the first heart transplant carried out in 1967, which turned Christiaan Barnard, a South African surgeon, into a star. In that period, one of the first TV series with medical doctors as protagonists was broadcast in the United States: Dr. Kildare, which aired from 1960 to 1966, for a total of 190 episodes. The series ER made its debut in 1994. It is set in the County General Hospital Emergency Department of Chicago, which has since become a place of worship. Fifteen seasons were produced continuously, based on an idea by Michael Crichton and co-produced by Steven Spielberg. A worldwide success, expression of the need to see and understand emergencies, become familiar with astounding manoeuvres that save lives. Medicine has increasingly become a synonym of heroism and is conceived of as a series of amazing interventions. In 2004, the series that takes its name from the irritating but vulnerable Dr. House first appeared. He is an internist, not a surgeon, he himself is ill, he suffers from chronic pain and is addicted to painkillers: a brilliant mind, a real despot with trainees, he has no empathy at all, but is able to deliver astounding diagnoses and achieve impressive therapeutic results, apparently because of his being so detached. In 2005, Grey’s Anatomy started airing, and is still showing today. The story is based on the professional and sentimental life of the surgeon Meredith Grey, in an imaginary hospital in Seattle: one of the most successful series by Shonda Rhimes. Medicine is increasingly represented as a heroic enterprise. But surprisingly this representation of medicine has changed us, the viewers. The journalist Claudia Riconda ironically commented on Grey’s Anatomy saying it has changed our lives. Now we know what clamping the aorta means and we are perfectly able to perform a tracheotomy using our pen on a man run over by a truck in the street [10]. We also have European series: in Italy, for example Un medico in famiglia (A family doctor) has been broadcast since 1998, while Germany has The Black Forest clinic. Despite their differences, these TV series have played an important role in shaping the way we imagine caring relationships. They have represented them in the form of an expectation to be saved thanks to heroic and intelligent actions carried out by creative surgeons or brilliant doctors, such as Dr. House. Also, the American series 911 (the United States emergency number), which has been broadcast in Italy since January 2018, emphasises what doctors, nurses, firemen do. ‘Nine One one, what’s your emergency?’ is the operator’s question at the

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beginning of each episode. The professional figures who rush in and do their best to solve problems are fast and efficient. It is a metaphor of how medicine is viewed. These are important images, which depict a job that is often understood as normal administration, or worse, as a duty, as a series of tasks that, if not completed in the shortest time possible, cause these professional figures to be reprimanded, as they have disappointed the users. This attitude is indeed reflected in the attacks that take place in the ER and ICU wards, when results do not meet expectations (Fig. 1.2). Indeed the main narrative—in this sense, we can turn to TV series as important indicators—has altered our perception of chronicity as a health and social problem, to the advantage of the treatment of acute pathologies. I wish there were a series that took place in a residence for the elderly or in a general medicine clinic where

Fig. 1.2  The narratives of TV series have shaped our way of imagining medicine. Very often these series are fairy tales, they feed our desires: who better than George Clooney in the part of a paediatrician can save my child from a terrifying disease? In the event of an uncertain diagnosis, who better than Dr. House can finally find out what I am suffering from? And if I have to undergo surgery certainly I will feel safe in the hands of someone like Meredith Grey. (credit: Denis Makarenko, shutterstock.com)

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‘normal’ people are treated with small interventions. It would have all the necessary ingredients to make the story interesting: love affairs, gossip and deceptions and emergencies. One thing however is certain: TV series encourages blind faith in emergency interventions and the disappointment caused by the discovery of chronicity.

References 1. Moynihan R.  Selling sickness: the pharmaceutical industry and disease mongering. Commentary. Medicalisation of risk factors. BMJ. 2002;324:886. 2. Davies P. A new theory of cancer. Nov 1, 2018 (online). 3. Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A. Improving chronic illness care: translating evidence into action. Health Aff (Millwood). 2001;20(6):64–78. 4. Ministero della Sanità. Piano nazionale della cronicità. http://www.salute.gov.it/imgs/C_17_ pubblicazioni_2584_allegato.pdf. Accessed 22 Dec 2016. 5. Wijlaars LPM, Gilbert R, Hardelid P. Chronic conditions in children and young people: learning from administrative data. Arch Dis Child. 2016;101(10):881–5. 6. Costantini M. Sfide e opportunità delle cure palliative moderne. Asmepa ed.: Bologna; 2017. 7. Roth P. Everyman. Boston: Houghton Mifflin; 2006. 8. Sacks O. A leg to stand on. New York: Summit Books; 1984. 9. Purnell S. First lady: the life and wars of Clementine Churchill. London: Aurum Press; 2001. 10. Riconda C.  Grey’s Anatomy. Perché Grey’s Anatomy ci ha cambiato la vita. Feltrinelli: Milan; 2015.

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Chronic/Acute: Two Opposite Scenarios?

‘What does chronic mean?’ the patient asks with a discouraged and sometimes aggressive tone. ‘That I won’t ever get better and that there are only palliative treatments for my illness?’ If this reaction occurs in a paediatric context it is all the more disheartened. Bronchial asthma, for example one of the most common chronic conditions in children, forces parents to confront a situation that scares them. ‘My son is chronically ill, is that possible?’ So they change doctor: they are more willing to believe those who speak only of bronchitis. The reactions are different: there are those who refuse to believe what they are being told and pretend the problem does not exist, there are those who stop trusting a doctor and look for another one, those who rebel and those who surrender, patiently doing as they are told without putting up resistance. The distinction between chronic and acute is artificial and superficial: it does not account for many situations. However, the dichotomy as a model can be useful if we keep in mind the shades of grey. We may start with a fact: chronicity, or the condition of illness that accompanies a person for the rest of his or her life, or for a long part of it, is on the rise. The two main causes are an ageing population and the more advanced knowledge in the field of medicine. More diagnoses made earlier mean more people with a variety of illnesses. The era of patients walking around in their pyjamas in the cafeterias of hospitals is over. Today hospitals admit people for the shortest period possible, mainly for reasons of spending. Hospitals have become the place where only the surgery that cannot be done in day hospital regime is carried out, and where major emergencies are treated. Today patients often go home with a drain that will be removed later. In the past, in the case of chemotherapy, doctors waited for the nadir, the lowest count of white blood cells; when the levels began to come back up patients returned home, usually after 10 days, only to be hospitalised after a month and repeat the procedure again. Today the treatment is done in an armchair in an outpatient surgery centre, and patients go home the same day. All the side effects, certainly much less severe

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than 30 years ago, must be managed at home: a situation that is not always easy for those who do not have an able family unit to assist them at home or who are willing to do so. If we look at the figures, we understand how much things have changed—not surprisingly. In the heroic past infections that now seem trivial resulted in certain death; the increasingly complex surgery of today was once unimaginable; today it is also much less invasive. However, alongside this progress, there are many interventions or cases of healing that are only partially successful. Chronicity has entered intensive care, where we find situations that 70 years ago were unthinkable: patients receiving continuous ventilation, who are tracheostomised, tetraplegic patients with constant septic states treated with timely interventions, made possible by continuous monitoring. At a certain point, these patients must leave the ICU unit and face the outside world, a ‘normal’ ward and rehabilitation: the electrodes and the oximeter are removed. This moment is often accompanied by anxiety and the feeling that ‘nothing will ever be the same’. Regarding chronic disease in the strictest sense—so-called ‘non-communicable diseases’—at a global level the data provided by the Fact Sheet of the World Health Organization (WHO) [1] tell us that: –– in the world 40 million people die from chronic illnesses every year, i.e. 70% of the total of deaths; –– 15 million of the deceased were of an age between 15 and 69 and 80% of these premature deaths happen in countries whose populations have a low to medium salary; –– cardiovascular diseases are the most frequent (17.7 million per year), followed by cancer (8.8 million), respiratory diseases (3.9 million) and diabetes (1.6 million); –– these four categories are responsible for 80% of deaths from chronic illnesses; –– the use of tobacco, excessive consumption of alcohol and poor nutrition increase the risk of dying of chronic diseases; –– diagnosis, screening and treatment of chronic diseases, along with palliative care, are the key points in the response to chronic diseases. Eurostat data from 2015 confirm what is described by the WHO [2]. These are the facts we must start from. The WHO has also proposed a Global Action Plan [3] for the prevention and control of chronic diseases for the period 2013–20, with a vision of a world free from the avoidable burden of chronic diseases (Table 2.1). Is this a dream? Of course, it will never be possible to be completely get rid of chronic diseases, but we can at least try to lighten the burden of chronicity. According to the WHO the chronic diseases that must be contained are non-communicable diseases, that is non-infectious diseases. A broader definition will allow us to better understand why they are so complex both for those who suffer from them and for those who treat them. The most appropriate definition of chronicity not only stresses the difference between chronic and infectious diseases but also traces a clear distinction between

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Table 2.1  The objectives of the Global Action Plan for prevention and the control of non-­ communicable diseases 2013–20 of the WHO Voluntary goals worldwide – A 25% relative reduction in risk of premature mortality from cardiovascular diseases, cancer, diabetes, or chronic respiratory diseases – At least 10% relative reduction in the harmful use of alcohol, as appropriate, within the national context. – A 10% relative reduction in prevalence of insufficient physical activity. – A 30% relative reduction in mean population intake of salt/sodium. – A 30% relative reduction in prevalence of current tobacco use in persons aged 15+ years. – A 25% relative reduction in the prevalence of raised blood pressure or contain the prevalence of raised blood pressure, according to national circumstances. – Halt the rise in diabetes and obesity. – At least 50% of eligible people receive drug therapy and counselling (including glycaemic control) to prevent heart attacks and strokes. – An 80% availability of affordable basic technologies and essential medicines, including generics, is required to treat major non-communicable diseases in both public and private facilities.

chronicity and emergency medicine, the medical field that deals with acute problems, generally understood as problems that can be solved definitely. As the historian of medicine Franco Voltaggio noted, working with chronicity is often a Sisyphean task for medical doctors [4]. Chronicity is the prolonged course of an illness that today accompanies most people from a certain age onwards. The road is often long, difficult, painful, sometimes it is also boring, for patients and doctors as well. Also, healthcare professionals who have reached a certain age and are no longer driven by the enthusiasm that motivates them at the beginning of their career, often have a ‘chronic’ problem themselves, which does not help the relationship with patients, which is already complex. In this context, going in the opposite direction, today there is a growing request for lasting health and well-being that can be summarised in the neologism ‘wellness’. In the world of wellness an almost obsessive attention is given to what we eat. Excessive nutrition is alternated with special diets, based on the antioxidant and anti-everything properties of super-foods, which are supposed to prevent us from ageing: problems will cease to exist altogether, let alone chronic diseases. We eat ginger, turmeric and quinoa; some people feed on blueberries also in winter; we spend a fortune in food supplements, although data showing that tomatoes in pills actually work are hard to find. Products and diets, the colours used and the promises made, look like travel brochures: no problems, happiness, a form of wishful thinking that we go along with in some periods of our life. Moreover, pathologies often arise among the healthy when risky treatments are administered such as cosmetic surgery and pharmacological treatments based on vitamins, phytotherapy, growth hormones and other products that have side effects. There is no scientific evidence that these products are effective or safe. The demand for this type of performance is fuelled not so much by the fear of becoming ill, as by that of ageing, of no longer being able to maintain an image of ourselves which is that imposed by the market, an image of youth. Healthcare professionals who work in this sector love to call

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themselves ‘vitality doctors’. Every effort is made to enhance this vitality, to deny and delay the onset of chronicity as much as possible. This phenomenon should not be confused with the demands made by a large number of people with chronic diseases that are more or less disabling, and that require healthcare services—examinations, sometimes surgery and rehabilitation— that might not be able to restore health completely, that can however alleviate symptoms, increase self-sufficiency and prolong life. Projects of this kind require the active collaboration of patients, or rather compliance, which implies the commitment, shared with the doctor, to follow the right treatment. Compliance, or commitment to therapy, is high for acute diseases and very low for chronic diseases. It is believed that not even 50% of patients follow long-term treatment. Any attempt to remedy this situation requires a deeper understanding of chronicity. Many healthcare professionals complain about the lack of compliance on the part of their patients, about how the behaviour of patients is not what it should be, with regard to drugs, lifestyle and indications given by the doctor. Doctors tell of how despite their clear and understandable indications, patients claim they are unable to follow them. People with diabetes, for example often have difficulty following medical advice because of physical problems such as major osteoarthritis, which restricts movement, or because food plays a very important role in the patient’s life and gives it meaning. This, in fact, is the case of Marisa:

• Marisa was 79 years old and had been attending Day hospital for respiratory failure. She was a genuine Roman woman, 175 cm tall and weighed more than 120 kg. For several years she had suffered from diabetes, which initially was treated with metformin tablets, but since her last admission to hospital she had to start subcutaneous insulin injections. She was a great smoker; smoking caused chronic obstructive bronchitis, which causes respiratory distress. In the beginning, she was only administered oxygen therapy, but with the increase in weight she also started to suffer from sleep apnea, she complained about painful headaches in the morning and daytime sleepiness. Examinations showed hypoxia (lack of oxygen in the blood), but also an increase in carbon dioxide. For this reason, she had to start using a night ventilation mask. She suffered also from arterial hypertension, which led to hypertensive heart disease. Her heart condition sometimes decompensated causing significant edema and increased dyspnea. Her weight ruined her hips and knees, but she could not be operated because she was considered high risk. She had been admitted to hospital on several occasions for recrudescence and fevers, but also because of depression, she often stopped using the ventilator and neglected herself. Marisa lived alone, her three children came to visit occasionally for large family lunches. The day of our interview she was returning to the day hospital following a visit to check on her diabetes.

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• ‘The doctor told me off’ she said, plunging into a chair after having adjusted her walking support: ‘she said I’m fat, I’ve gained more weight, that I have to stick to my diet, that I can no longer eat sweet things, I have to walk’. ‘What did you say?’ I asked. ‘I didn’t say anything: she doesn’t know me, she can’t understand. You know, I did everything you told me: I quit smoking, I started the oxygen therapy, I also agreed to use the muzzle at night (meaning the mask for non-invasive ventilation); but now I’ve had enough. I will never give up food, I won’t stop eating maritozzi with cream, the amatriciana pasta and fried lamb with artichokes that I prepare for the whole family. I will not do that, that’s it. At least I’m honest’. We began to negotiate, to try and limit the damage, I suggest eating half a maritozzo, and only on a Sunday, I said she should take insulin regularly and never stop night ventilation. She returned to the hospital for a few more checks. Later I learned that one morning she was found dead in her bed. Marisa was an obese patient, she was complex and also typical: too much food and too much smoking, which were the cause of all her chronic problems. Compliance is difficult to achieve when a patient suffers from so many different simultaneous diseases, as is increasingly frequent today, and when treatment means changing the habits of a lifetime. In this case, what is needed is patience and the willingness to negotiate. A dialogue begins that is also made of compromises when a person is able to come to terms with chronicity and realises that by changing something life gets better, that the effort is worthwhile. A completely different scenario is that of a progressive and disabling disease such as amyotrophic lateral sclerosis (ALS) that leads to paralysis of all the muscles including the diaphragm thus making it impossible to breathe. Until a few years ago in Italy it was not customary to speak openly about the prognosis of a disease: it was considered unnecessarily cruel, especially when the disease could not be treated. The person affected by ALS was reassured and told it was a matter of time or that the disease would soon stop progressing. Obviously, this was not true. Patients arrived in the ER who did not know about their diagnosis and what it entailed. They came in with severe breathing difficulties and because of the emergency, even when it was not possible to ask for their consent, they were intubated, taken to the ICU and then tracheostomised. This is what happened to chronic patients who were unaware and had not been put in the position to make choices about their future: all they could do was endure the decisions made by others, or die if they did not get to the ER in time. This is the case of chronic patients with an acute problem threatening their life which forces both relatives and the medical doctors of the ER to make difficult and painful choices. We like to think that situations of this kind belong to the past: today people with this disease are aware and decisions, if all goes well, are made gradually together with the team that takes care of the person and the family. At this point, we are again faced with the artificial dichotomy between chronic and acute. If a health problem

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is seen as acute, therefore as potentially transitory, then it is not a case of accepting to follow a therapy that may last for years or for the rest of one’s life. For this reason, the attempts made will aim to reduce or even eliminate the treatment. But by doing so, the risk is a new acute situation that could have been avoided. Acute events occur in the area of chronicity: in the case of patients suffering from asthma who can no longer be treated at home; with diabetics who are in a coma caused by hypo- or hyperglycaemia; with chronic respiratory failure, with patients who are dazed and confused because they are in a state of hypercapnia; with pneumonia in neurological patient who has problems swallowing; with a cardiorespiratory problem in a person suffering from cardiopathy who does not take the required medication. This is only a small list of acute problems that can arise in chronic conditions. Hospitalisation solves the acute condition, but the chronic situation, which is complex, still has to be managed at home. A comparison of these two paradigms, chronic and acute, can be useful to understand expectations and disappointments: both on the part of doctors and nurses who believe they should have provided more effective and immediate care, and on the part of patients who hope to solve everything immediately. These scenarios present many variations. They reflect the everyday life of those who have entered the world of chronicity and must battle acute events.

References 1. http://www.who.int/mediacentre/factsheets/fs355/en. 2. http://ec.europa.eu/chafea/documents/health/hp-infosheets/chronic_diseases_informationsheet_ it.pdf. 3. https://apps.who.int/iris/bitstream/handle/10665/94384/9789241506236_eng.pdf;jsessioni d=0759A43DA3F4528421B460FAB3FD8A76?sequence=1. 4. Voltaggio F. Alla ricerca della verità. Janus. 2001;1:120–2.

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The Burden of Chronicity

‘Doctor, I found an apartment close to the hospital. It’s in a rather expensive area of Rome, but I can get to the ER easily, several times a week. There, they put me on a drip and give me an aerosol, and I’m fine for a while’. This was when anti-­ inflammatory therapy was already available for counteracting asthmatic conditions with dosed aerosol. But for this patient the vicinity to the hospital provided a sense of safety within a state of chronicity. Chronicity, for her, could be split into a series of acute events. However, the scenario in which chronic illnesses, chronically ill patients and, finally, doctors treating chronic illnesses, all act, is different from that of acute events. The patients’ underlying attitude is different: for instance, they may request more advice from the same specialist, perhaps after having sought different opinions from other professionals; the doctors’ basic attitude is also different. In order to give a concrete idea of such a general statement, let us consider a common situation in everyday medical practice. • Giovanni is a 40-year-old man, he visits the doctor in the hope of curing his cough, which presents itself with wheezing and dyspnea. He tells the doctor he is allergic to dust mites and cats, and that he suffered from asthma as a child. Now, after catching the flu, the cough will not go away, and the wheezing leaves him breathless. He has tried a bronchodilator that he remembers using as a child. The doctor examines him, performs spirometry which shows a bronchial obstruction, then carries out the bronchodilation test administering metered-dose aerosol and after 10 min the lung function test is normal. With this, he confirms the diagnosis of asthma. He tells Giovanni that he suffers from bronchial asthma; the asthma, which has returned, is causing the cough, which wakes him up at night, and the wheezing. Bronchial asthma is a chronic inflammatory disease of the bronchi and

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lungs, and as such must be treated for the rest of his life. The patient looks at the doctor in disbelief while he writes out the prescription, prints it out and hands it to him. Giovanni reads the prescription and exclaims: ‘Doctor, you forgot to write down for how long I have to take the medication.’ The doctor, already a little impatient, tells him again that this is a chronic problem. If the doctor is very direct, he will make clear that chronic means that it will not go away and that the patient will have to live with it. He will speak with a stern tone of voice, or perhaps with a touch of compassion. At this point the patient will begin to be seriously concerned. The remark that usually follows is: ‘You don’t mean I have to take this stuff forever! It’s not healthy to take so much medicine!’ Ideally, at this point, there should be some negotiating, leading to a prescription which is acceptable for the patient as well. However, doctors often end the examination with comments such as: ‘Do as you wish, I’ve given you my opinion’. At this point the patient either does not reply, he or she takes the prescription and then, unsatisfied and unconvinced, seeks the opinions of another specialist, knocking on the doors of leading experts, reading more or less reliable websites online or choosing to take the path of alternative medicine. • The story of Matteo, a 9-year-old boy, asthmatic since early childhood, is a typical story that is useful to illustrate how the therapeutic relationship can develop negatively. The boy was brought to my studio for an emergency, his mother requested an after-hours appointment. She showed up with her son 2  h late, insisting, in an almost menacing tone, that he be visited immediately because his breathing was so bad. The young patient, frequently admitted to the ER, suffered from a serious asthmatic and allergic condition. Nonetheless, his mother had always, at some point, interrupted his treatment. This explained the emergency: the previous night the child’s breathing had been so bad that the mother had become alarmed. The child’s allergic condition and his frequent relapses were the effect of interruptions in his therapy. Tests of the respiratory function showed a severe obstructive defect reversible with a bronchodilator. I asked the mother: ‘Why don’t you stick to a regular therapy’? She replied: ‘That’s not necessary because after treatment he’ll be fine’. I tried to explain that asthma is a chronic disease and has the exact symptoms her son suffered from. The mother looked at me compassionately, as if to say ‘you have no idea, you are only useful to us now...’ She left the studio after I recommended a follow-­up visit, that she stay in touch, and that she continue the therapy. But she never showed up again. The studio secretary was curious, so she looked up the mother on Facebook and found out from a post that the following day little Matteo went horse riding: a young seriously asthmatic, allergic, child… We were incredulous: was it a matter of ignorance, or was his mother in complete denial? My attempt to make her understand what chronicity is certainly had not had any effect.

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Every patient’s dream is to emerge from the illness, also a serious one, and to return to the previous state of health with no defect, with no sacrifices to make or change in lifestyle. The dream of every doctor, on the other hand, is to lead the patient towards recovery and to see that the patient is satisfied and grateful. A model developed by Anne Lacroix and Philippe Assal [1], comparing chronicity and acuity, can help explain the divergence between these expectations and what actually happens in a chronic setting. An acute illness or an acute episode is a dangerous and life-threatening event, symptoms are evident and appear suddenly, they require a diagnosis and a timely therapeutic intervention. Doctors follow a reductionist approach that focuses only on the essential. This is the model doctors learn during training. These events account for less than 10% of all consultations. Doctors are prepared to deal with this type of context and are aware of their professional ability. They focus on specific aspects of the episode, determine the diagnostic approach, decide and monitor the therapy. Therapist is part of a team which is based on a biotechnological model and requires a passive patient who accepts the treatment. Healthcare professionals often forget or neglect the psychological dimension and do not know the patient. The therapy is codified and precise; it means hourly or daily checks, it may be short-term and is directly related to the crisis. Patients ask for help because they are suffering and seek rapid relief therefore they will easily cooperate and follow the prescribed treatment. Once the crisis is over patients forget about the painful event and are grateful and full of admiration for the medical team that saved their life. A chronic disease, on the other hand, is silent, often incurable and has an uncertain progressive course. Pain linked to chronic disease is mostly persistent, although sometimes intermittent. The disease is associated with a certain lifestyle and is often unrelated to biological factors. Doctors prescribe treatment, but can only indirectly control the disease: they must educate and share their knowledge with patients. Medical professionals are called upon to oversee the course of the disease, including its silent phases, and to treat acute attacks as emergencies; they must look for complications and provide psychological and social support. In other words, they must accept a change in their medical role. Therapy is crucial for survival and for day-to-day well-being. Patients are responsible for following a therapy that may require constant discipline and may come with costs that are not only physical but also psychological, professional, social and financial. Even when they cannot recover from the disease, patients must be able to deal with it and control its effects, managing them in accordance with or despite various factors related to their personal life; they must get used to regular treatment and know how to intervene quickly in case of acute episodes; they must be vigil at all times in order to prevent the disease from worsening. Patients must accept a reduction of those functions that we normally associate to good health. Because the roles of doctors and patients are so different in the ideal settings of acuity and chronicity, unsolvable conflicts can arise between them. Complaints are often the result of stereotypes activated on both sides. Acute patients often blame their doctors for a lack of immediate action and for not limiting the problem with a reductionist approach, for not understanding

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immediately, for not doing everything necessary at the right time. Chronic patients complain that doctors do not care and do not listen enough and that they are generally incompetent—because the disease never changes—that they do not share their knowledge or their doubts, or that they lack certainties. Patients end up blaming doctors for the disease itself. Doctors also blame their patients. They tell them they are not collaborative, not compliant, that they are not changing their lifestyle, that they do not follow the rules, that they are disobedient, that they do not accept the chronicity of the condition, that they do not understand the scientific approach when they resort to charlatans. The crucial point in these conflicts is that both patients and doctors must accept their new roles: the role of chronic or imperfectly healthy patients on the one hand, and of competent doctors on the other. Chronicity is a burden that both patients and caregivers must bear. Of course, doctors will be hasty, often not taking the time required by chronicity. They will not investigate properly, maybe they cannot or do not want to understand everything; but on the other hand, until patients accept the idea of being chronically ill, the patients’ work—which may very well be minimal, such as swallowing a pill or using a spray for asthma—is not carried out because patients themselves are not convinced, mature or psychologically ready. Doctors practicing in the field of acute cases may also find themselves negotiating the diagnostic treatment or the surgery required. And also here, patients may only partially or temporarily comply with the therapy prescribed. • A very learned and sensible 30-year-old asthmatic woman came to my studio and told me that she really needed my help. She had been suffering from asthma all her life, she called this her ‘asthmatic condition’. I was curious as to what she meant by this. Valeria, this is her name, explained that real asthma was what was happening now every night, with serious episodes, and that this was the reason she was consulting me. She would never have come to seek help for her ‘condition’, that she and all her cousins had lived with since early childhood. She would never have asked my opinion for the ‘asthma condition’, that is the minor events in which she could not breathe—she gave me an example: the smell of a steak on a grill. But asthma, real asthma, scared her. At this point, we began to negotiate...

Reference 1. Lacroix A, Assal P.  Therapeutic education of patients. New approaches to chronic illness. Editions Vigot: Ginevra; 1998.

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The Strain of Being Chronically Ill

It is difficult for patients to give up the image they have of themselves as young and healthy people, with no ailment or problem, who can trust their body and accept this new identity: that of a chronically ill person, that is a person who is healthy, but imperfect, who must live a life that includes problems caused by a disease. However, the strategy that each patient adopts to live with this disease, so-called coping, depends on his or her personality, on his or her personal relationships, on the level of acceptance and on various social and cultural factors. Accepting that one is affected by a chronic condition is difficult at any age, but for children and adolescents—and even more for their parents—it is even harder.

• I remember an examination in my office. A cheerful, noisy family came in to have their 12-year-old son Luigi looked at. When they walked in, the boy was arguing with his 7-year-old sister. Once seated, the mother scolded her son because he was wearing a woollen sweater and it was hot, then the daughter scolded her mother and told her this was not the moment to be saying such things. The father sighed. Then they seemed to take notice of me for the first time. The mother told me that the sports doctor has sent them, he recommended that their son be seen by a specialist. It was clear that she thought this was unnecessary. The sister immediately stepped in: she also wanted to be examined. I asked the boy what he thought and whether he had breathing problems. He told me that he felt something tight around his throat and could not breathe when he ran and played football: he was a talented player and liked the sport a lot. His mother gestured and made me understand she did not believe this; his father, on the other hand, told me that the boy had spoken of these problems several times. I proceed with the examination, everything seemed to be normal, but the spirometry showed a clear obstructive defect, reversible with salbutamol, a broncho-

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dilator. It was proof that the boy had asthma. I began to explain this. His mother said, ‘Oh, but this is only temporary, right?’ I tried to explain that generally asthma is a chronic problem, and chronic means it does not go away. At this point, the little sister of the boy started jumping up and down screaming: ‘So he will die!’. She kept repeating this and laughed. ‘He’s going to die’. I hesitated, I did not know whether to laugh or be serious, then I decided to look at her intensely and say: ‘We will all die one day’. She looked at me perplexed and calmed down. I am recounting this scene because it helps to take a glimpse of the wide range of feelings that emerge when we first talk about a chronic problem. There is a surprise, like: ‘I’m being kicked out of the land of the healthy: this isn’t possible!’. Surprise is mixed with fear—perhaps this chronic condition is what will put an end to our life, and cause a lot of suffering. I am aware all these emotions are at play when I diagnose chronicity, I try not to sound dramatic. I talk about the treatments that work and I say that people grow old with asthma, that a person with asthma may even become a great athlete, have children and do whatever they want. But, of course, the diagnosis weighs heavily. There are families that immediately say: ‘Okay, these things happen, we’ll deal with it’; others, on the contrary, give the impression they are being kicked out of paradise. The feelings associated with a diagnosis of chronicity change with age. Young adults often have a narcissistic reaction: ‘Me chronic? That’s not possible’. An athlete with orthorexia, who does everything he or she can to ward off illness and be perfectly fit, may experience a sense of defeat that may even lead to depression; others, feeling the burden is too heavy, may adopt an attitude of denial. Denial leads to not taking one’s medicine regularly, to use it only in an emergency. On the opposite side of denial, there is the joy of a cancer patient: ‘The oncologist told me that it might very well be chronic...’. In this case, ‘chronic’ means not fatal. For everyone however it is about embarking on a journey towards a new identity. The metaphor of a ‘new identity’ that chronic patients must acquire can be found in an international study coordinated by the Hastings Center (New York), which provides an important indication to this regard. At the end of the twentieth century, the study ‘The Goals of Medicine. Setting New Priorities’ [1] tried to identify what the profile of the medicine of the coming century should have been: In aging societies, where chronic disease is the most common cause of pain, suffering, and death – where, in other words, the illness will continue over time regardless of what is done medically  – caring becomes all the more important, coming back into its own after an era in which it always seemed a second-best choice. In cases of chronic illness patients must be helped to make personal sense of their condition, and helped to learn how to cope with it and live with it, perhaps permanently. By their sixties, most people will have at least one chronic condition, and by their eighties, three or more. For those

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over eighty-five, at least half will need some significant help in carrying out the ordinary activities of daily living. Because the chronically ill must learn to adapt to a new and altered self, much of the work of the medical professional must focus on the management, not the cure, of disease, this case “management” should mean the empathetic and continuing psychological care of a person who must, one way or another, come to terms with the reality of illness. It has indeed been noted that medicine may have to help the chronically ill person forge a new identity. The greatest burden of chronic illness for patients is precisely this struggle to build a new identity. The strategies adopted can be very different. Models have been developed to understand the relationship between the ill person and the disease based on the concept of ‘locus of control’. There are three types of ill people. When the control room is outside, people who are ill have the feeling that their life depends entirely on factors independent of them; for this reason, their attitude is one of constant dependence on doctors and hospital institutions. When, on the contrary, the place of control is internal, subjects have the impression they can master what is happening to them. This attitude is the one that generally allows to better control the disease and enhance self-management. With asthma, for instance, this approach is the most effective [2]. Finally, some patients have such a desire for independence they end up behaving irresponsibly, which increases the risk of hospitalisation. The most useful attitude is somewhere between these two extremes: patients are able to use their skills, but they are aware of their limitations and know they must seek medical advice under certain circumstances. The figure of caregiver and educator should help patients develop this type of approach. This is possible if caregivers are aware of the conflicts caused by different ‘loci of control’ and if they do not give in to the temptation of taking everything into their hands, with an attitude that is more or less: ‘I’ll take care of you’. Acceptance of chronic diseases has been compared by Lacroix and Assal [3] to the process of mourning, the psychodynamics of which were theorised by Freud and described in a systematic way by Elisabeth Kubler-Ross [4]. The path to acceptance can last months or years and involves the well known seven stages of grief: initial shock, denial, anger, bargaining, depression accompanied by hope and, finally, acceptance. This sequence does not necessarily occur in chronological order. It is easy to see how difficult an interview with a patient who is in denial or is angry can be; we expect this patient will not be very cooperative. Or, as we prefer to say today, ‘adherent’ to therapy. Transitional denial is a frequent phenomenon in the process of accepting a disease. However, also persistent denial is observed, especially among asthmatics—it is found also among diabetics—and it can be fatal. This is the case of people who think of treatment as the habit of taking medicine only when they need to, and do not take into account the drugs that are actually required; they do not follow the plan the way they should and often end up in the ER. Not even the intensive care unit, where doctors have just saved their life, makes them change their attitude. Persistent

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denial is a frequent phenomenon in near-fatal asthma, as revealed in a study by Yellowless et al. [5]. It should however be kept in mind that this is an unconscious strategy. In spite of the contribution of psychological models, which can help in understanding behaviour that seem difficult and sometimes bizarre, it is essential to bear in mind that these models are also somewhat reductionist: they try to fit a behaviour into a pattern. The singular experiences of patients present us with an infinite variety of ways to accept and cope with a chronic problem. All individuals should be respected in their own individual journey. Also, chronicity forces people to consider mortality, as the mischievous sister naively told her brother who had asthma in the scene recounted above. In fact, the book by Atul Gawande dedicated to mortality [6] ends with a warning: Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. In short, addressing chronicity means: to push back boundaries with treatment, but also to acknowledge them. This process can be a very difficult and painful one. It is easier to complete it accompanied by a caregiver, someone who can share the journey.

References 1. Hastings Center. The goals of medicine. Setting new priorities. Hastings Cent Rep. 1996. 2. Laforest L, El Hasnaoui A, Pribil C, et al. Asthma patients’ perception of their ability to influence disease control and management. Ann Allergy Asthma Immunol. 2009;102(5):378–84. 3. Lacroix A, Assal P.  Therapeutic education of patients. New approaches to cronic illness. Editions Vigot: Ginevra; 1998. 4. Kubler-Ross E. On death and dying. New York: Scribner; 1997. 5. Yellowless PM, Ruffin RE. Psychological defenses and coping styles in patients following a life-threatening attack of asthma. Chest. 1989;95:1298–303. 6. Gawande A. Being mortal. Medicine and what matters in the end. New Delhi: Penguin Random House India Private Limited; 2015.

5

The Strain of Treating Chronic Patients

Health professionals, not only physician but healthcare professionals in general, are trained in the field of acute medicine, a field in which they feel competent and gratified, respected in their roles and useful in restoring good health. In this area, the treatment of patients is fast and straightforward, solutions are clear and visible. In other words, this is the opposite of what happens with chronicity. Chronicity is exhausting, but what is worse, it is boring. Chronicity is always about the same problem, it presents no diagnostic or intellectual challenge, no emergency room chills, no need to test the brilliant intellect of a Dr. House and often no acknowledgement on the part of the patients saved and their families. Chronicity appears to have no scientific frontier to push forward with innovative know-how and therapeutic practice. The exhaustion that healthcare staff is subject to in this field is mainly due to monotony and the feeling one is giving more than what one is taking. Chronicity inevitably mortifies any aspiration of saving lives. In fact, a gradually weakening motivation presents an emotional cost: the momentum that leads healthcare professionals to embrace a therapeutic profession tends to fade. Although chronicity involves the majority of the requests made to medicine, the training that doctors receive seems to neglect this aspect. The training of nurses is no different. Medical schools—where also nurses are now trained—give no emphasis to the psychological, pedagogical and social skills required for dealing with this type of pathology. Practitioners working on the frontline of chronicity are confronted with situations for which they have not received training and preparation. Only a few naturally gifted professionals with an innate pedagogical talent are able to adjust and find satisfaction within a new professional context. But for most frustration is the norm, often coupled with an attitude of arrogance that sets in as a defence mechanism. There is a novel that may help us understand the fatigue that comes with treating the chronically ill: The House of God, [1] a book that has enjoyed considerable success in the United States and throughout the Anglo-Saxon world. According to the scientific journal The Lancet, the novel written by Samuel Shem, a pseudonym for the psychiatrist Stephen Bergman, is one of the two most important medical novels © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_5

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of the twentieth century—the other being Sinclair Lewis’ Arrowsmith, written in 1925. The House of God was published in 1978. The New York Times described it as vulgar, amusing and worrying. It initially caused a scandal but went on to become a cult. It focuses on the life of a group of young doctors during their 1-year internship in hospital. Written in an ironic and amusing style, the book describes the psychological damage and the progressive dehumanisation the main characters undergo. Some expressions from the novel, such as ‘gomer’—meaning ‘get out of my emergency room’—have become part of every-day medical slang. In the novel, chronic patients come and go from the Emergency Room. In the introduction, John Updike praises the novel for capturing an impression of life in its essence, narrating ‘an adventure in the valley of death and the truth of the flesh’ (Fig. 5.1). In The House of God, doctors call chronically ill patients ‘gomers’—meaning they should get out—because doctors working in the field of acute medicine cannot and will not take care of them. The main reason for this is that an intervention often means interfering with the patients’ unstable regime, which is hard to improve.

Fig. 5.1  The cover of the US edition of House of God. (Berkley Publishing Group; Reissue edition © 2010)

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Another reason is that hospitals fear they will become a parking lot for chronic patients. In Italy, 40 years on, the situation is not very different. Here the same scenario is described by doctors and nurses who deal with the elderly, chronic and non-self-sufficient patients, a burden that family members, who might need a break or a vacation, wish to be relieved of. A family, for example will park the chronically ill and elderly grandfather in an ER, where doctors will have a hard time discharging him because of his problems and will end up having to admit him. Without any feeling for the ill, The House of God portrays how a young doctor, who has only just graduated, has a hard time with the cruelty and coldness of his more experienced colleagues who, having already seen all there is to see, treat their medical practice as a kind of sport, or as a movie set for advancing their careers. When these two drives also fail, healthcare operators become burned out. Unmotivated and ineffective, the main character tries to conceal his mental state from his colleagues, but has to admit to the inner devastation that a year of daily confrontation with chronicity has led to: ‘Lethal, this becoming and being a doctor! Denying hope and fear, ritualised defences pulled up around ears like turtlenecks, these doctors, to survive, had become machines, sealed off from humans  – from wives, children, parents – from the warmth of compassion and the thrill of love’. Three of the eight rules that apply in The House of God deserve special attention: –– ‘With a cardiac arrest, take your own pulse’. This means: do not panic. –– ‘The patient is the one with the disease’. In other words: you are mortal as well, but get over it and treat the patients. –– ‘Watch out, they can always hurt you more’. That is: they (the ill) can hurt you; be careful and think positive. And here is a dialogue that illustrates the survival strategy adopted by medical doctors: ‘You’re white as a sheet’, said Cohen. ‘That guy really blasted you’. ‘I don’t know how I can take twenty-three more hours of this’. ‘The secret is to decathect. Withdraw your libidinal investment in what you’re doing. It’s like putting on a special helmet, and going around on autopilot. Emotionally, you withdraw, so that you’re not really there. Survival, eh?’ ‘Yeah, I wish I did have a space helmet. Decathexis is an inner space helmet. Almost all jobs are decathected, you know why?’ ‘Why?’ ‘Cause all jobs are boring, except this one. Try it’. I donned my imaginary space helmet, put myself on autopilot and decathected like crazy. I waded through gallons of urine and immersed myself in the steady stream of frightened men from 16 to 86… The novel’s strength lies in its ability to convey the difficulties that doctors face when dealing with chronically ill patients (without taking into account the patients’ perspective). It portrays the strain of long shifts during which doctors must stay

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awake; the degree of suffering that doctors are exposed to during training and the defence mechanisms they come up with—today we call this burnout. Interns have a self-mocking humour and often lack a sense of mercy. Perhaps today such a novel would not be well received, as it would pass as being politically incorrect. Burnout can occur in many situations, but it is most common in chronic contexts; it is characterised by emotional exhaustion that leads to the loss of energy. In extreme cases, it can develop into a state of depersonalisation, similar to the Freudian concept of decathesis referred to in The House of God, a disorder that manifests itself with the persistent or recurring sensation of being detached from oneself, from one’s body and mind. It is a dissociative disorder that can also occur in many other situations such as states of anxiety, panic or depression, and can be related to a defensive strategy that also leads to treating clients as objects and not as people. The psychiatrist Roberto Boccalon [2] defined this state as ‘a reduced sense of self-­ achievement in which the subject has the feeling that his or her competence is diminished in the relationship with others’. Boccalon carried out research on 271 doctors and 734 nurses working in hospitals in Ferrara. The findings were impressive: over 56% of doctors and 70% of nurses present symptoms of an average degree of burnout. As a coping strategy against increasing stress, doctors and nurses develop a detached and stereotypical attitude towards patients, as well as increasing degrees of cynicism, i.e. they put on their virtual space helmet. This phenomenon can contaminate an entire medical facility, which as a whole will do everything possible to deny the situation. Once triggered, this state of exhaustion is difficult to reverse, especially since doctors are often unaware that they need help. Furthermore, overwork and lack of gratification are not the only factors that can trigger burnout, a condition rooted in more complex dynamics of acceptance and coping. One of the problems is our general social context, one in which beauticians are held in higher regard than nurses, and in which illness, pain and death are constantly denied; we live in a society that increasingly considers health professionals more as enemies than allies because they are charged with the ungratifying task of communicating to a person that their health has deteriorated, which happens in almost everyone’s life and leads to an irreversible transformation. Of course, this does not mean that those working in the front line, in the ER, in cardiac and emergency surgery, cannot be exhausted, only because they are usually more gratified. A recent review [3] of 11 different articles, in a period that goes from 1997 to 2017, highlighted that out of 40,000 ER nurses, 40.5% showed symptoms of emotional exhaustion, 44.3% had a high rate of depersonalisation and 42.7% had low levels of self-accomplishment. These factors lead to high levels of absenteeism, depression and drug abuse, including alcohol abuse. The study concludes that burnout is harmful in the areas of high-tech medicine and that it reduces productivity. Above all, burnout causes distress. Those unfortunate enough to end up in an Emergency Room face exhausted, tired, disappointed, frustrated, poorly paid and often ill healthcare professionals. Nurses are also victims of this condition: those who started out inspired by Florence Nightingale years before, find themselves fighting against excessive workloads, exhausted colleagues and malfunctioning

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basic organisation, something they can only observe and complain about, having no power to change it. Not to mention the number of chronically ill who unduly accesses the Emergency Room: asthmatic or diabetic regular patients who refuse to take their medication, as well as the many hospitalised homeless people. Add domestic violence to this, and the increasingly frequent verbal and physical attacks by exasperated relatives. I can remember a dramatic event that took place in a hospital ward: following a respiratory arrest, an 82-year-old woman had had a tracheotomy; she was obese, hypertensive, she had a heart condition and suffered the consequences of a colectomy due to a colon tumour. She was presenting yet another complication after months of intensive care: a bronchopneumonia caused by multi-resistant bacteria, which even the various antibiotics prescribed by infectious disease specialists were unable to treat. One morning the patient died; her three children were on their way to visit. They had been warned several times about the seriousness and gravity of her condition. Upon receiving the news of her death the youngest son burst out in anger. Standing in the hallway he screamed at the doctors, telling them they were murderers and going up to them in a threatening manner; he became violent, banging his head against the elevator doors. The nurses called security and the son calmed down. But the staff present that Sunday—a doctor, two nurses and a helper— all felt violently attacked, even if only verbally. They felt that their work was unappreciated: they had worked hard for this ill woman, with kindness and patience. They were wounded and incredulous. The family members were no doubt exhausted after spending months visiting the mother in different intensive care units, but this could not justify their violence. Somehow the story came to a happy ending: the son apologised to the staff; it turned out he was in great financial difficulty because his only fixed income was his mother’s pension. Events like these leave scars. Some healthcare professionals react with cynical and defensive attitudes, others put up barriers against patients and their relatives, who are perceived as potentially dangerous (Fig. 5.2). Violence in hospitals, more frequent in Emergency Rooms than in wards, is a recurring theme in the media and blogs [4]. It is four times more frequent than in industrial workplaces and has recently spurred protests by healthcare professionals. The violence varies according to the cultural environment and the medical specialties; in chronicity, violence is not as frequent. Professionals who treat chronic diseases routinely, intervening with slight adjustments and unspectacular decisions, are subject to a different kind of exhaustion; violence in these settings is marginal compared to reactions that can be seen in the Emergency Room, but the fear of legal actions is just as bad. One source of anxiety is no doubt the staff’s basic expectations: a doctor whose desire it was to save lives will be frustrated in a context such as a diabetic clinic, where doctors visit the same patients over and over. This will cause constant frustration unless health professionals can redefine their vocation and motivation. Some dream of the kind of action that goes on in an ER but would not work there because of the stress and the responsibilities involved (which include the risk of legal actions!) as well as the exhausting shifts. Some organisations work differently, rotating their staff in different tasks and

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Fig. 5.2  French nurses protesting:‘Let us heal’. (Credit: Mathieu Fevry, shutterstock.com)

places. In this case, doctors may switch between roles and take turns acting and listening. Chronicity does not only affect health professionals. Family members who assist a chronic or no longer self-sufficient person are also at risk of burnout. According to a widespread idea, caregivers are at greater risk of becoming ill. It has often been noted that 70% of all caregivers over the age of 70 have a reduced life expectancy compared to the population that does not have to deal with this situation. This data, published by the media, has been spread by volunteers and caregiver organisations that demand more resources. The condition even has a name: caregiver syndrome. However, regardless of the legitimate demands for more resources for long-term assistance, the legitimacy of this definition, not found in medical literature, has been questioned. The first major study focusing on the burden of assisting family members was carried out by Schulz and published in JAMA in 1999 [5]. The research examines the work of approximately 1000 caregivers and non-caregivers between the age of 66 and 93. The 4-year prospective study was adjusted according to socio-­ demographic factors and diseases. The study finds that ageing caregivers exposed to physical and mental stress have an increased death risk of 63%. In a nutshell: from a certain age onwards caregivers die earlier. The study has been much cited and used. However, five different studies carried out since then find that caregivers have a longer life expectancy and a reduced mortality rate [6]. Another rather original scientific study focuses on measuring telomeres. This is the terminal region of a chromosome, composed of highly repeated DNA, which

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protects the end of the chromosome from deterioration or fusion with neighbouring chromosomes. A shorter telomere means accelerated cellular ageing. Out of the 209 cases examined, this process was found to take place in people who spend more time as caregivers and suffer greater stress due to efforts of caring for young adults or children. This finding is very interesting because it allows us to measure psychological and emotional data. The study is still open to interpretation because it shows that those with medium and high levels of stress have longer telomeres [7]. Caregiving certainly has a major impact on people’s lives, but for the most part this impact is not measurable. The fact that it is harder to assist a person in a cramped environment than in a villa with alternating staff seems pretty obvious. But in all contexts the relationship between the assisted persons and their families is crucial: people love and hate each other in all families, all the more so when assistance is involved. The burden of chronicity is considerable in terms of economic and social costs for society, health professionals and families, and should be approached with greater awareness and support for all. This is a major challenge for health policies, and cannot be dealt with on a voluntary basis. In short, a chronic condition is a complex situation, and it is also complex to treat people suffering not from a single disease but from many overlapping conditions. It is difficult to remain psychologically healthy, enthusiastic and empathic, also when attempting to understand this complexity. Labour laws in Europe have reduced work hours: this helps to avoid having to wear a ‘helmet’ as a means of dealing with tiredness and exhaustion when working with the sick. However, more staff, adequate spaces, pleasant and bright surroundings, along with preventive measures aimed at recognising the symptoms of those wearing defensive helmets, would obviously provide great help.

References 1. Shem S. The house of God. New York: Richard Marek Publishers; 1978. 2. Boccalon R. Chi cura rischia di bruciarsi. Il Sole 24 Ore-Sanità Management-37; 2001. 3. Li H, Cheng B, Zhu XP. Quantification of burnout in emergency nurses: a systematic review and meta-analysis. Int Emerg Nurs. 2018;39:46–54. 4. Hawkes B.  Workplace violence. A rising epidemic in nursing. https://www.nursingce.com/ blog/workplace-­violence-­a-­rising-­epidemic-­in-­nursing. 5. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282(23):2215–9. 6. Roth DL. Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist. 2015;55(2):309–19. 7. Litzelmann K, Witt WP, Gangnon RE, et al. Association between informal caregiving and cellular aging in the survey of the health of Wisconsin: the role of caregiving characteristics, stress, and strain. Am J Epidemiol. 2014;179(11):1340–52.

6

How to Treat the Sick and, Above All, Where?

This chapter could easily be titled ‘The rise and decline of sanatoriums’. We are in fact living a major shift in how we deal with chronicity, now treated outside hospitals that have become places of high-intensity and high-tech medical care. To understand this context, it is useful to consider the transition that has taken place in our recent past in the treatment of tuberculosis, thanks to unprecedented developments in scientific knowledge. Until Koch’s discovery of the bacillus, tuberculosis was a chronic disease in the strictest sense: the disease led to consumption and death. Today this is no longer the case: tuberculosis is an infectious and transmissible disease, but not only can patients be cured they can also recover completely. The book Un villaggio straordinario (An extraordinary village) [1] by Stefano Rossattini is an excellent guide to understanding how a single disease can influence society, national healthcare systems and healthcare facilities. The book is a conceptual and iconographic journey that illustrates the history of the Morelli Village in Sondalo (Sondrio), the largest sanatorium in Europe (Fig. 6.1). Tuberculosis, like many other diseases that led to consumption, was treated in the Middle Ages with emetics, purgatives and bloodlettings. It was later treated with expectorant syrups, antipyretics and opiates. The turning point came in 1882 when in Berlin Robert Koch announced the discovery of the etiological agent causing the disease: Koch’s bacillus. In the same period Carlo Forlanini, in Milan, was promoting a physio-mechanical theory and the idea of an artificial pneumothorax for the treatment of unilateral pulmonary phthisis. The first sanatoriums for tuberculosis patients date to the beginning of the eighteenth century. Doctors had long been seeking the most suitable environment for treating tuberculosis; it was also believed that a certain altitude provided immunity from the disease. Following Koch’s discovery and knowing that tuberculosis is an infectious disease that can be treated with a specific therapy, although there was still no mention of antibiotics, the first treatment centres were opened. The imperative was to isolate the sick. Hence, sanatoriums were born. Some were truly splendid, such as the

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Fig. 6.1  The Morelli Village in Sondalo (Sondrio), the main sanatorium in Europe for the treatment of tuberculosis; until the discovery of antibiotics, treatment was based on the Italian ‘three Ls’, which were ‘Lana, letto, latte’ (wool, bed, milk) and prolonged stays in isolated facilities, often in mountain areas. (Credit: Simone Polattini, shutterstock.com)

sanatorium in Davos, Switzerland, which inspired Thomas Mann’s novel The Magic Mountain (1924). These facilities, partly equipped as hospitals and partly as residences, were suitable for the long-term hospitalisation of tuberculosis patients, during which they were subject to strict hygiene and dietary regimes, as well as total physical and mental rest. The time when tuberculosis institutions were considered as ‘a prelude to the cemetery’ was over. Elderly patients with fibrothorax caused by the disease and the treatments received such as therapeutic pneumothorax can still recount what life in a sanatorium was like. An 80-year-old woman who has been receiving treatment for years for respiratory insufficiency caused by tuberculosis in the 1940s, tells us about the world she lived in for 2 years. The food—she says—was wonderful, it was tasty and nutritious. During her long hospitalisation she fell in love with a man who was already married but was no longer accepted by his first family because he was suffering from ‘consumption’. He divorced, she married him and was in turn rejected by her own family for two reasons: her tuberculosis and her marrying a divorced man. Her story has a symbolic value: the time spent in the sanatorium allowed her to recover from the infectious disease and to go on to cope with chronicity in old age. Going back to the sanatorium in Sondalo, the mortality rate here, as in the rest of the world, continued to fall from 1945 onwards. In Sondalo research was carried out in spacious biochemical and histopathological laboratories, and a breeding farm for animal testing was set up.

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Meanwhile, welfare in the world and in Italy improved, malnutrition affected fewer people and homes became less damp and dark. All of these factors contributed significantly to the decrease in the number of sick people. Towards the end of the 1940s and then in the 1950s, antitubercular medication was produced and streptomycin, isoniazid and rifampicin became available to everyone. Pharmacotherapy became more effective over time, significantly reducing the need for surgery, artificial pneumothorax or pulmonary resection. At this point, the Morelli sanatorium in Sondalo had to change its destination, and a profound transformation of its judicial status as well as its management became necessary: from a single-specialist structure, the sanatorium became a general hospital aimed at providing citizens with high-quality healthcare. In 1970, finally, while the number of patients with tuberculosis decreased considerably and the number of those with respiratory deficiency increased, a new ward with 50 beds attached to the physiology clinic was opened. A specialised unit for diabetics and one for alcoholism followed. In 1971, the INPS (Italy’s National Social Security Institution) Villaggio Morelli sanatorium was transformed into a multizone Presidium operating under the Lombardy Region. The sanatorium’s history illustrates the social history of a once chronic disease, identified as an infectious disease thanks to advances in medical knowledge. The sanatorium went from being a hospital where chronic patients died to being a centre for treatment. The transformation undergone by tuberculosis stands out against the backdrop of the history of a single care facility: the disease went from being a chronic, often incurable and disabling disease with a strong cultural connotation, that of a disease that could not be cured, to being an infectious disease from which it is possible to recover thanks to pharmacological therapy. In the so-called developed world, the pharmacological treatment of tuberculosis is within everyone’s reach. Today its treatment has changed completely. If we consider the broader scenario we may observe what is happening in other parts of the world. One of the most revolutionary public health strategies to combat tuberculosis, described by the WHO as the most revolutionary in terms of lives saved, is the so-called DOTS (Directly Observed Treatment Short-course). In order to implement this type of therapy, health policies, guided by a political vision, must provide clinics with efficient microbiological equipment, where doctors and nursing staff—if possible from the local national health system—can administer medication directly. Medication should be swallowed before the medical staff. In this context, the availability of medication must be guaranteed. The World Bank has stated that this is one of the most cost-effective healthcare interventions ever implemented. The DOTS strategy is effective in 95% of cases and prevents multiresistant tuberculosis. Tuberculosis is still today a disease related to poverty and hunger in the world; very frequently it occurs as a complication of AIDS. Treatment has become complicated in some cases because of multiresistant strains that have emerged, and because the treatment is not always completed for several reasons: poverty, inability to access antibiotics, non-adherence to therapy due to drug abuse or homelessness, non-adherence due to lack of information or other reasons, the belief that medicines are harmful and that the human body heals itself. The DOTS strategy is an easy and

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inexpensive way out; it does not require any kind of hospitalisation—unthinkable in countries with few resources. The romantic idealisation of the disease during the nineteenth century, which has now changed, painted a very different picture. Sanatoriums were seen as enchanted places located in mysterious locations in the mountains. Crepuscular poetry helped to create an aura of sublimity around the disease, as witnessed by the verses of the poet Sergio Corazzini (1886–1906), who died of tuberculosis: Oh, I am, truly ill! And I am dying, a bit, each day. You see: like all things. I am not, therefore, a poet: I know that to be called: poet, it would be best to live a very different life! I know nothing, my God, but how to die. Amen. The idea of tuberculosis has left a deeply distressing mark on the cultural identity of so-called developed countries. There were many fantasies around tuberculosis that converged in describing it as the disease of death and consumption. Its menacing aura was replaced by that of cancer in the twentieth century. This is the evolution brilliantly described by Susan Sontag in her well-known essay, Illness as Metaphor [2]. What tuberculosis once represented can now be applied to cancer. The author warns us against metaphorical thinking: ‘The metaphors and myths, I was convinced, kill. (For instance, they make people irrationally fearful of effective measures such as chemotherapy, and foster credence in thoroughly useless remedies such as diets and psychotherapy)’. So she wrote in 1979. Yet still today we find ourselves battling with the idea that disease is a personal fault. Unfortunately, tuberculosis is still a threat to most of the world’s population. Sanatoriums have disappeared, having performed a valuable service to contain the disease. But the fight against this disease around the world is still on our agenda. In the meantime, many sanatoriums in our hemisphere have been transformed into clinics for respiratory diseases. This has happened in Switzerland, Germany and in other parts of Europe. The history of the Forlanini Hospital in Rome also has a symbolic value relevant to our story (Fig. 6.2). Today in Italy—as well as in Europe—it is very unlikely for any kind of chronic patient to be admitted to a public hospital without presenting an acute condition that requires hospitalisation. Even private clinics for the wealthy prefer to take in patients who require surgical treatment because it is more remunerative. Chronically ill patients must become intensive care patients, or require equipment or medicines that can only be found in hospitals. They may require a rehabilitation cycle provided it is high-intensity rehabilitation, that justifies hospitalisation. How often do patients dream of being able to rest, to be taken care of, to be relieved of the burden of having to think of everything themselves, of giving their families a break, perhaps in a room with a balcony and a view, just like in the old

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Fig. 6.2  The Forlanini Hospital in Rome is now in ruins and is used at most as a film location. It was one of the largest respiratory disease hospitals in Europe, with wards for infectious lung diseases such as tuberculosis and then wards for pulmonary oncology. Tuberculosis treatment was replaced by cancer treatment in some wards, almost following to the letter the metaphorical shift proposed by Susan Sontag. The wards that once opened onto balconies, where high-calorie diets and total rest for the mind and body were prescribed, became diagnostic and chemotherapy wards for lung cancer. In the 1980s and 1990s, chemotherapy still required hospitalisation that lasted about 10–15 days. That era is also over. So the Forlanini Hospital in Rome, once a structure with a beautiful theatre and six kitchens, was shut down definitively after 81 years, in 2015. Credit: Photo by Antonello Anappo. Reproduced from Arvaliastoria.it http://www.arvaliastoria.it/public/005045. jpg (Please share under conditions of Creative Commons BY-­NC-­SA Italia 3.0)

sanatoriums? How often do they dream of a beautiful place surrounded by nature where everyone knows each other? In the old days people used to be hospitalised for years, they fell in love and got married. Today we can appreciate the efficiency of modern medicine and the fact that no one with tuberculosis is secluded from the world for such a long period. However, there is some nostalgia for the slow, safe world of sanatoriums, now definitively lost.

References 1. Rossattini S. Un villaggio straordinario. Litostampa Istituto Grafico: Bergamo; 2002. 2. Sontag S. Illness as metaphor. New York: Farrar, Straus and Giroux; 1978.

7

The Rainbow of Places of Care Disrupted by the Covid-19 Pandemic

There are many questions surrounding care: to whom should it be addressed? Who should be providing it? The public—the National Health Service—or the private sector? What is quality care? When should care start and when should it stop? All these questions are intertwined and together they form a universe we may call the ethics of care. It also has to do with spirituality. The question regarding where care takes place may appear as secondary. Yet the different settings profoundly affect and condition these questions. Places determine whether and what kind of care is provided, its protagonists and the ways in which it is done. Care is unique, like light; but the places where it takes place break it down into a rainbow of different colours. Generally, the place of care is the city, that is our civil consortium. In fact, exclusion from coexistence is one of the most radical forms of deprivation of care. People are excluded for a variety of reasons: poverty—where the possibility of obtaining care is linked to income—racial discrimination, prejudice and ideology (‘Our people come first’, etc.). Deprived of social solidarity, the sick and frail are left to their fate. The story The Leper of the City of Aosta, by Francois-Xavier de Maistre [1] is a very strong symbolic representation of this. The narrative revolves around something that actually happened to de Maistre, at the time when he was an officer with the Napoleonic army. Passing through the city of Aosta, he noticed a well-kept garden with a tower at the centre: ‘The Tower of Fright’, it was called. As he was about to enter, he was stopped at the entrance by a man who warned him not to enter. The man was a leper: he lived in the tower, isolated, together with his sister before she died—she was also sick. The city regularly provided him with food; otherwise, he was kept in complete isolation. The leper says to the visitor: Sometimes even the children from the town appear at my garden gate, and climb up into my tower at once, lest I should frighten them or bring them harm. From my window, I watch them frolic about and make off with some of my flowers. As they leave, they look up at me: Good day, leper, they say to me laughing, and it cheers me up a little.

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He is utterly lonely. ‘We are in a city, and yet one would think we were in the wild’, the officer remarks. ‘Solitude is not always found in the middle of the forest or among the rocks. The unhappy man is everywhere alone’ the guest in the tower replies. The officer would like to shake his hand, but the sick man dissuades him: ‘It would have been the first time such a pleasure were granted me. I have never shaken hands with anyone’. Following this short dialogue, in which the leper confesses how lonely he feels, saying his only consolation is religious resignation, the two men say goodbye. The officer hopes they might remain in contact, perhaps they could write to each other. The leper—who never says his name, throughout the story he only uses the name of his illness—refuses. Why should I seek to deceive myself? I ought to have no society but my own, no friend but God. We shall meet again in Him. Good-by, generous stranger, may you find happiness... Good-by forever! The traveller left. The leper shut the gate and bolted it. It is a remarkable literary depiction of a sick person’s exclusion from the civil consortium, fully internalised by the sick person himself. It has left a trace in the real world: the tower in Aosta, renamed The Leper’s Tower, still exists. Another metaphor of social cohabitation that cuts someone off can be found in Dino Buzzati’s dystopian tale Cacciatori di vecchi (Hunters of old men) [2]. In this case, it is not concern about hygiene that determines exclusion from cohabitation, but the right to citizenship which is reserved only to the young. The city in the tale is inhabited only by people who are young, healthy and performing; the old have no place in this ideal society. Not only, they are hunted at night, by gangs of young people: At the time men over forty thought twice about showing their face around in the middle of the night. The new generations held the old in absolute contempt. Grandchildren harboured a dark resentment against their grandparents, children against their fathers. What’s more, they had formed something similar to clubs, companies, sects, dominated by a wild hatred for the elderly, as if the elderly were responsible for their dissatisfaction, melancholy, disappointment, unhappiness, so typical, everywhere, of youth. At night these gangs went wild, especially in the suburbs, chasing the old people. The old men, frightened by this upheaval, also participated, to provide an alibi for themselves, to let the young know – although it was useless – that although they were fifty or sixty years old, their spirit was still young, that they shared the aspirations and the anguish of the new recruits. It was an illusion: they could say what they liked, the young were still against them, the young felt they were the masters of the world, and they demanded, as was right, the lordship hitherto held by the patriarchs. ‘Age is a sin’ was their slogan. The nightmarish and violent society, which excludes those who are not considered deserving of care, is also at the centre of a visionary novel by Cormac Mc Carty, No

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Country for Old Men [3]. In the real world, exclusion from society is not as extreme as that which is depicted in these symbolic narratives. People thought to be undeserving of treatment are not locked up in towers; however, the solitude they are condemned to is no less real. At times they end up in the news: we hear of people who die in a state of abandonment, in their homes, and their bodies are found only some time later. Not to mention the homeless, who vegetate until the end of their life on sidewalks. The old, and the chronically ill: they are not hunted down, but they are nevertheless forced to live at the margins of a society that portrays itself as eternally young. The resentment these individuals inspire is very similar to what the authors of these terrible novels we mentioned above have imagined. Negative utopias disturb us. We should keep them in mind, working hard to ensure that they do not become reality. Our energies should be directed towards the places where care is provided, and we should commit to correcting what causes these people to be disqualified. There is one thing we were certain about, despite these imaginary scenarios: if a disease attacks us, we have a safe place to fight it. A place where the best therapeutic skills are concentrated: hospitals. They have become ‘fortified citadels of health’, following the birth of a clinically scientific approach, exemplarily described by Michel Foucault in The Birth of the Clinic [4]. Traditionally hospitals were places of charity for the poor and the marginalised, where medicine could do very little to restore people’s health. In modern times hospitals became factories of health, equipped to restore ‘normality’, treating people forced to deviate because of illness. The operation of this machine required rules. We may call the most important of these rules the principle of the revolving door: inside there are the sick, outside the healthy; and when a sick person is healed, the door turns and lets the person back into the world of the healthy. Who have, during this time, handed the person over to professional healers, visiting during the hours in which it is allowed. The sick person’s family is excluded (or enters very quietly). The space for treatment is strictly regulated; patients feel mostly confined to the hospital where they have been admitted. Some social changes have taken place, slightly improving this model. Consider the achievements of those who have battled for the rights of the sick, of the Charter of Citizens’ Rights, which applies to situations of illness. The first solemn proclamation took place in Rome, in the town hall, June 14, 1980, thanks to the initiative of the Court of Patients’ Rights. Since then, there has been an increasingly strong demand to transition away from the models of imprisonment of the past, adopted by the hospital ‘machine’. To the point of calling into question even the areas of the hospital characterised by the highest levels of closure, namely the intensive care units. The exclusion of family members and visitors supposedly takes place for reasons of hygiene and safety—and is therefore aimed at protecting the sick. These reasons however are inconsistent from an epidemiological point of view, at least they were before Covid-19 changed our lives. The outcome of these forms of isolation is the total deprivation of beneficial contacts for those who have to pass the test of treatment in intensive care, as well as frustration and anxiety for family members.

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A recent stance against hospitals organised as ‘healing machines’ can be found in a book by Salvatore Iaconesi, La Cura (Care) [5], in which the author recounts his own experience. The writer denounces a condition he describes as being that of a ‘hostage’: ‘I am patient XYZ waiting for my turn on the production line’. He tells his story and is very critical of this logic. He speaks to people on the internet and realises there is a greater objective that must be achieved than simply finding a technical cure for the pathology he suffers from: he wants to transform the role of patients, who tend to become depersonalised by the hospital routine. Symbolically, it is a question of going from care to Care (this is also the name of his website). His criticism of the processes of biological reductionism, expropriation of the body and depersonalisation, caused by how hospital care is organised, developed in the name of ‘humanisation’. Despite the ambiguities of many programmes that use this term to describe what they do, the fundamental intent is clear: even the most effective care, to be found in excellent hospital structures, is not such if it does not become Care. Indeed the main role of spirituality is to assign the role of protagonist in the healing process to the ill person. The revolving door of the hospital turns again and... who was inside is outside. Healed? Let us say half healed. Maybe that was the scenario in the past, in fact, today it is no longer the case. Hospitals are increasingly designed to solve acute problems. Once the critical moment has passed and the strategic intervention has been carried out, patients are discharged (even though their state of health is not what it was before...). In line with new epidemiological profiles, which record the absolute prevalence of chronic degenerative diseases, hospitals are no longer conceived as places where patients remain until their health is completely restored. Also the criteria of remuneration, no longer calculated on the basis of the number of days of hospitalisation but on the basis of the type of interventions provided, regardless of the resources employed—these are the criteria of the Diagnosis Related Groups, imported and adopted also by the Italian National Health System—encourage early discharge. This is why patients very quickly find themselves being cared for by their families. In welfare states, families are supposed to be somewhere in the background, with the public system taking charge of care and assistance. But when welfare states shrink, families—regardless of what their choice would be—are called upon to take care into their own hands. In a society made up of increasingly small families, with a demographic profile of people who are increasingly older, more fragile and who suffer from multiple illnesses, the burden of care can become excessive. It is no longer proportionate to the resources of our society, a structure that is benevolently considered as a ‘welfare state offered by nature itself’. The conditions of survival of those who are chronically ill, which can last for years—we should only think what it means to assist a person with Alzheimer’s or multiple sclerosis for many years—creates tension and conflict. Not to mention the economic burden, which often forces families into poverty. Even the most generous family members are overwhelmed by such a task, which exceeds their resources.

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In this scenario, inside the family, the figure of the caregiver has become pivotal. Often it is a woman. Also, it is linked to a phenomenon we may call ‘bedroom emigration’, described very effectively by Franco Arminio [6]. To grasp the negative effects that this care work imposes inside households, we will quote another novel: Orfani bianchi (White orphans) by Antonio Manzini [7]. The white orphans the title refers to are the children that immigrant caregivers are forced to let them remain in their country of origin: with grandmothers, when it is possible, or in institutions for children. The protagonist of the novel is a Romanian caregiver who assists an old lady in a rich neighbourhood of Rome. Writing to her son, who has been left home, she describes a very dismal picture: ‘Here in Italy people live on their own. They have everything but they hardly ever smile, they aren’t happy. That’s why I feel so sorry for Mrs. Olivia. They have left her here with me, a stranger from a faraway place. And when her time comes, perhaps I will be the only person present, a stranger who is by her side only because she is paid’. But things go badly, worse than we expected. One day the caregiver is summoned by the son of the lady, who tells her she is fired: ‘“We have to sell the house. We need the money.” “Where is Mrs Olivia going?” I asked him. “There’s a nursing home. We’ll put her there. Mum doesn’t understand anything anyway.”’ And so, when the time comes, there will not be anybody with the old lady, not even her caregiver. The accusation the novel makes, by blaming the family, cannot and must not be generalised. Families are not only selfishness and abandonment. They are also the place where admirable examples of dedication can be found. Should we put old people in nursing homes or should we keep them at home? This dilemma involves deep moral conflicts. Cultural reasons also play an important part. In some contexts, it would be unthinkable not to keep the person in need of care at home until the very last moment. However, care cannot be synonymous with heroism. Without resources, even the strongest are crushed. The emergency posed by chronicity requires a redistribution of social investment in care, and a change in the hospital-centred model of acute care. Territorial assistance must be rethought, favouring the effective presence of healthcare workers in homes. Spirituality must be innervated with social policies if it is not to be reduced to a series of empty words. Families must not be left alone, home care needs to be promoted because it is not enough to encourage families to take care of their weakest members. We have learned about yet another place of care in Orfani bianchi: at a certain point, the family members decide to take the elderly woman away from her caregiver and send her to a nursing home. For many people in our society this is an almost certain destination. The trajectory of care leads to this place for a variety of reasons: because the family is no longer able to provide for the person or because it is the choice of the elderly themselves. These nursing homes—in Italy they are called assisted healthcare residences and their acronym is RSA—have a history, and in the course of time different characteristics have prevailed. At the beginning, in the period of transition between the nineteenth to the twentieth century, their main function was to provide social hygiene.

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As was made explicit at the time of the creation of the Pio Albergo Trivulzio, in Milan, the aim was to ‘clear the streets of the poor and the old beggars’. The welfare system led to intervention in favour of an elderly population that was now unable to support itself autonomously. (The same structure became sadly famous during the Covid-19 pandemic in Milan and is accused of not having sufficiently protected its guests, many of whom died alone). As Paolo Mantegazza claims in Elogio della vecchiaia (In praise of old age) [8], written in 1895, the aim was to ensure that in all civilised countries there were ‘hospices for the poor old people unable to work, to whom we provide a bed and enough bread not to die of starvation’. The socially oriented painting of the time portrays what those structures were actually like. There is a memorable painting by Angelo Morbelli titled Giornata di festa al Pio Albergo Trivulzio (A day of celebrations at the Pio Albergo Trivulzio) (1895), housed in Paris at the Musée d’Orsay: four old men are sitting on squalid wooden benches, there is no exchange between them or with the environment, they vegetate, waiting for the day of celebrations which are taking place somewhere else to be over. By representing the underworld of the city, social painting denounced the marginality of the elderly, their exclusion from active life, the disengagement from family affections, the lack of motivation to stay alive. Except for some deplorable exceptions, today assisted healthcare residences are not like this. There has been a shift away from hospices, which is also reflected in their name, towards nursing homes. Their names are mostly reassuring: ‘Villa serena’ (serene villa), ‘Casa La Quiete’ (calm home) and so on. However, although these structures have a modern organisation, they are burdened by old problems. Even if the models of retirement homes or assisted living facilities can be very different: they go from the five-star facilities we have seen springing up in so many places in the United States and in Europe, to homes that guarantee the bare minimum. The essential aspect is that losing one’s home means much more than simply moving. It is more like an expatriation (we may think of the complex meaning of the German world Heimat, which conveys something more than the sense of ‘home’, it is a totalising emotional system of reference). Institutionalisation often involves a regression to humiliating behaviour. The fundamental commitment of carers should be to safeguard the self-esteem of their hosts. In a positive sense, the energies of care gravitate around the idea that the physiognomy of these structures has changed in the meantime: from ‘old people’s homes’, these structures have often become real hospitals for patients with multiple chronic pathologies, places where they must receive appropriate care that hospitals no longer offer. In fact, the elderly residing in these places often remain there for the rest of their life, and the structure acquires the role of a hospice. The aim of care must therefore be to customise the end of life. In Italian ospizio is a retirement home for the elderly. Today in Italian the English word ‘hospice’ is used to characterise the hospice in the sense proposed by Cecil Saunders, who developed a cultural and organisational model that has determined a real shift. In a short time hospices have become the place where the most ambitious project of care is tested: a project that does not abandon the ill when treatments made available by medical science have done all they can, but takes care of them and allows a dying person to end his or her life with a sense of fullness. Obviously,

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this means that a hospice is conceived not as a place to confine discarded existences, but as a good place to die. Care inside a hospice is always of a palliative type, management of pain is central, together with that of symptoms. Also, all necessary measures are taken to render the moment of passing away less traumatic. And so hospices value spirituality to the fullest. There are hospices that have highlighted the spiritual dimension so much that it has become their main characteristic. It is not only a matter of offering religious pastoral care, respectful of different religions and confessions. More in general, hospices privilege everything that can be defined as belonging to the sphere of spirituality, in a broad and inclusive sense. These places foster introspection. They promote the integration of the various elements that compose a life (it maybe a question of repairing cracked vases with gold, following, so to speak, the teachings of the ancient Japanese art of kintsugi). It is a matter of promoting the transformation that we can call fulfilment. There is one thing worth noting: in many hospices there are guest books in which residents, their friends and family can write down their impressions. Scrolling through those notes, what is striking is how many of these comments have one point in common: even people who have stayed in many different places where excellent medical care is provided admit that here they have finally found a place of Care. We had confidence and were comfortable in the places where treatment is provided, they were well organised and coordinated. We did complain a bit about how crowded ERs were, about beds being fewer than before, about the waiting lists for rehabilitation, and for diagnostics; but we knew that if something important happened, we would be assisted. We were in Italy, which ranks second in Public Health according to the World Health Organization. A country that has had a national health service for more than 40 years, which translates the right to health as a fundamental right, provided for by the Constitution, with universal coverage. A health service that could count on excellent surgeons and intensive care units equipped with state of the art technology, as well as prestigious research institutes. Everything was available to everyone, perhaps not right away, but it was. Of course, we also read about hospital infections—Italy has a sad record on this account. Too many antibiotics were prescribed and plans to decrease their use— strongly supported by the Slow Medicine movement, with projects that follow the ‘less is more’ principle—were difficult to translate into action. But on the whole we were satisfied. Among projects for improvement, there were also some aimed at opening up intensive care units to round-the-clock visits. We wanted to promote narrative medicine as a basic attitude of care: an ill person is not only a person to be treated, but also a person we must listen to, with listening as a priority in all therapeutic interventions. The latter being, in any case, customised. We were against biological reductionism and we talked about shared decisions and treatment plans drawn up in advance with regard to the end of life. And, at least in hospices, there was also room for multicultural spirituality. We were also confident inside our homes, where caregivers from far away countries, often professional immigrant carers, who had left their families behind, children and old people, took care of us so that we could continue a normal working

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life. And when it was no longer possible to provide care at home, the alternative was facilities such as Assisted Health Care Residences. We were assisted also when we neared the end: hospices were born that provide palliative care, psychological and religious assistance, music and poetry, with art hanging on the walls. In hospitals also there were those who dealt specifically with spirituality, i.e. priests—often African, due to the progressive decline in local vocations—who did the rounds of the wards blessing the ill. Often called at the last moment so as not to frighten them: nobody liked to talk about the end. Then came the tsunami, in the form of the coronavirus which causes the illness called Sars-Covid-19. From here we watched the Chinese catastrophe unfold in Wuhan, and we liked to believe that the epidemic would never reach us. But then a Chinese couple was admitted to the Spallanzani infectious disease hospital in Rome, and in February 2020 there was the first native Italian case in a hospital in Codogno, in the northern region of Veneto. The patient had been discharged. At home, he got worse and went back to the hospital. From the ER he was transferred to a medical ward; only after a few days did someone realise that it might be the same virus that had appeared in China. In the meantime, it had infected many other people and in a very short time Codogno was declared a red zone and circulation was halted. The first appeals were made asking people not to go to the hospital. But how was this possible? Can we no longer go to the hospital when we get sick!? People were told to phone an emergency number if they developed symptoms, and if someone needed to be admitted, then an ambulance had to be used. The Civil Protection set up triage tents: patients could enter hospitals only after a selection process. From that moment on, the sense of security that hospitals used to inspire in us was gone. At the same time, the tragedy was taking place in Val Seriana, in the territory of Bergamo. Ignoring the advice given by the Italian National Institute of Health, activities were not stopped with the first signs of the epidemic. The consequence is that today every family in the area is mourning at least one relative. The image that best represents this tragedy—one we all looked at with disbelief and fear—is that of military convoys transporting corpses to other cities, because Bergamo’s crematorium could no longer cope. This image took us back in time, in fact, these convoys reminded us of the wagons that during the plague stopped in front of every door to collect the corpses to be thrown into mass graves. The coffins lined up in front of the crematoriums spoke not only of how the health system, the one we designed and used, taking it for granted, had reached its breaking point but also of funeral homes and crematoriums operating beyond their capacities. The whole of Italy watched the news in tears—we had then reached the highest mortality rate in the world—while the healthcare system of the rich North collapsed, doctors and nurses cried, got sick and died, nurses showed the sores caused by their protective facemask. As to what happened in the places of care, we have many stories, while everything else, unfortunately, can be imagined. In the beginning, the sick people asked what was wrong with them, what treatment was being given to them, when would

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they be able to see their loved ones. But as they got worse, seeing the nurses struggle, they gradually stopped talking and stopped asking. For some, it was already something if they could manage to breathe. They gave up, and in the best of cases, they became completely reliant on doctors. It was the end of narrative medicine and shared care planning. Treatment meant giving in to clinicians’ decisions. Including the dramatic choices that resuscitation specialists were forced to make: faced with limited life-saving resources, they had to decide which patient could use them. A decision that was a matter of conscience, and was certainly not discussed with patients. The devastation of the epidemic also affected the facilities for the elderly and people who are not self-sufficient. What we euphemistically called ‘nursing homes’ became deadly places for too many guests. Operators were forced to work with bare hands, without protection; the elderly often died without a test revealing the infection, and did not even enter the statistics of Covid-19 victims. It is probably futile to discuss mortality with or caused by coronavirus: as if fragile people, with a dozen or so concomitant diseases, kept in a state of precarious balance thanks to certain amount of daily drugs, would not have died if there had not been the coronavirus. Chronicity, with its duration, the victorious achievement of our medicine, and a novel way of being healthy, was wiped out by a virus in the blink of an eye. Death triumphed: ‘and still the mode offends me’, as Francesca da Rimini said in Dante’s Commedy, meaning the way she was murdered was more offensive than death itself. When the epidemic became a socially accepted fact, facilities were closed to the outside, visits by family members were suspended. The result was that people died with no assistance: they were not assisted by the staff, which was overwhelmed by the emergency, or by their families. In many cases relatives were informed only after a dear one had passed away. In many hospices the situation was very similar. The very environments created to render death peaceful, far from hectic medical interventions that were no longer appropriate, became anterooms of the most desolate departures, where the ill had no contact with anyone at all. When the epidemic reached its peak, it was time to assess what was happening. So many dead, so many people dying in solitude, families going through terrible pain for not being able to be close to their loved ones while they passed away. Hospitals were closed: the days in which it was possible to dream accessible intensive care units were over. Coronavirus was in control. Non-Covid emergency rooms were evacuated, so as to prevent people from catching the virus in hospital; clinics were closed. Only obstetrics, oncology and a few other departments remained open, and even these only for urgent cases. Even obstetrics regressed: fathers, who had acquired the right to be next to a woman giving birth, had to wait in the parking lot during labour and childbirth. In retrospect, we say that never again can we be caught unprepared for a pandemic, as we obviously were. Preparedness—a system to prevent, protect, react and recover in the face of a health emergency—was once on the agenda, but sadly it was then dropped. This is what the Global Preparedness Monitoring Board, the body

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responsible for drafting the Global Risk Report, in September 2019, had already denounced. Top public health experts in various countries have been predicting for years that a virus could kill millions of people in a short period of time. There were clear signs of this, such as the past outbreaks of SARS and Ebola; however, we were under the illusion that nothing similar would happen. When Covid-19 came along, no-one was prepared, from an organisational and practical point of view. The unavailability of facemasks is the sad symbol of this situation. Of course, preparation has a cost and we preferred to spend money on other things. There are many aspects of public healthcare that we will have to reconsider: starting with hospital-­ centrism, the cuts to territorial health services and home care; the role of general practitioners; the regionalisation of healthcare systems, its consequences on the unity and coherence necessary in emergency situations; the progressive decrease in number and ageing of care professionals. When making an assessment we ask ourselves: how does spirituality fit into the new scenario we are forced to imagine? In addition to planning and prevention measures, we need other resources. Calamities and disasters alone are not enough to produce improvements in our way of life. That is why we turn to spirituality. If you look up ‘coronavirus and spirituality’ on the internet, more than 100 million entries come up, including narratives, films, interviews, advice. Some products can be certainly classified as the worst expression of spirituality: see the attempts to explain the epidemic as a divine punishment for our immoral behaviour. It seems that a certain form of self-proclaimed religious spirituality cannot help using its own interpretations of reality as a sharp weapon to blame people, as well as to improperly attribute shameful behaviour to divinity. In its highest meaning, spirituality takes us into very different territories. The coronavirus has left us feeling deeply insecure. It started when hospitals, perceived as being a place of care we were used to became a potentially dangerous place. Progressively the virus created a sense of suspicion towards every other potentially infected human being: it forces those who perhaps need distance to be close, and distances those who want to be close. It has made us question the relationships between young and old: beyond the emotional aspects, the behaviour of young people—exuberant, safe, confident of their immunity—has proved dangerous for people made fragile by age. It has also caused a lack of trust in the state, which reacts but never seems to do enough, being unprepared. Not to mention the economic insecurity, an unimaginable legacy of the virus. The spirituality developed around healing has also suffered: people have died in the wards, without being able to decide for themselves, in the worst state of ‘dis-­ empowerment’, without the comfort of family members and without any form of religious assistance. The impossibility of a dignified departure is a deep wound, which makes mourning all the more painful. We are faced with an immense task: we must recover what, with slow progress, was developed over the past decades. Someone called it humanisation, someone else simply good medicine or the right treatment. The dignity of death must also be recovered for the dying and for those who remain. The end and, when possible, the

References

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conscious participation of the sick person in shaping the last stretch of the road must once again be shaped by the biography and the vital project of individuals, in their individuality. Spirituality will look like what we were forced to leave aside, temporarily, in the raging of the epidemic, that which we must have the courage to proclaim as indispensable.

References 1. De Maistre X. The leper of the city of Aaosta. Whitefish: Kessinger Publishing; 1973. 2. Buzzati D. Cacciatori di vecchi, in Il colombre. Mondadori: Milan; 1966. 3. McCarty C. No country for old men. New York: Alfred A. Knopf; 2005. 4. Foucault M.  The birth of the clinic: an archaeology of medical perception. London: Routledge; 1973. 5. Iaconesi S, Persico O. La cura. Turin: Codice ed.; 2016. 6. Arminio F. Oratorio bizantino. Faenza: Carta Bianca ed.; 2011. 7. Manzini A. Orfani bianchi. Milan: Chiarelettere; 2016. 8. Mantegazza P. Elogio della vecchiaia. Pontecorboli: Florence; 2017.

8

The Epidemiological Shift from Acute to Chronic in India

Reality is a question of perspective Salman Rushdie

Let us shift our attention from developed countries to emerging countries. This is the prevalent scenario at a global level, as it includes most of the world. Living conditions, epidemiology, health policies: everything here is different. In this context different situations have one element in common, that can be summarised in one sentence: in these countries, acute and infectious diseases coexist with chronic diseases. To exemplify this fact, we may focus our attention on India. A huge country, fascinating as much as it is contradictory, its growth rate is similar to that of China—its GDP increased by 8.2% in 2016 and by 6.1% in 2019; also, the gap between rich and poor seems to be widening. There is a rich India, similar to Western countries, where the ‘middle class’ is on the rise and poverty is dropping. However, the country still struggles with infectious diseases such as AIDS and malaria; it struggles to treat about 400,000 children who die of diarrhoea and hosts about a quarter of the world’s cases of tuberculosis. When we think of India in terms of health, infectious diseases and starvation come to the fore. Infectious diseases, although slowly decreasing, still absorb a considerable amount of resources. With a population of 1.34 billion, the burden of disease in India is closely monitored by scientists interested in health globally. India’s burden of disease is dominated by 2 apparently divergent clusters of disease—on the one hand, cardiovascular conditions that are classically associated with overnutrition and affluence; and on the other, diarrheal disease and lower respiratory tract infections that are classically associated with undernutrition and poverty. This paradoxical mix of diseases reflects an ongoing epidemiologic transition, which has emerged alongside the transition from a low-income to middle-income economy.

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_8

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India boasts one of the fastest growing economies in the world, but economic gains have been heterogeneously distributed across the population. Against this dynamic epidemiologic and economic backdrop, there is growing interest in disaggregating national health statistics by socioeconomic groups, in part to inform discussions on allocation of finite resources for health and health care.’ [1] At a closer look this context is even more complicated. According to the WHO [2], in 2015 5.8 million people in India died of NCDs (non-communicable diseases), i.e. chronic diseases: cardiovascular and lung diseases, cancer and diabetes. One in four people in India is at risk of dying of a chronic disease before reaching the age of 70. India is also a country with a huge number of diabetic patients. According to the WHO, in 2015 diabetics were 69.2 million and will be almost 100 million in 2030. The consequence is a large number of patients with kidney failure. In December 2017, The Lancet [3] published an epidemiological report on India titled: ‘Nations within a nation: variations in epidemiological transition across the states of India, 1990–2016 in the Global Burden of Disease Study’. Eighteen percent of the world’s population lives in India: 1.340 million people; here states are more similar to nations. The conclusion of the article is that in India in the past 25 years, NCDs (Non-communicable diseases), which are chronic diseases, have surpassed CMNNDs (communicable, maternal, neonatal and nutritional diseases), at a rate that varies greatly from state to state. Maternal diseases and perinatal deaths are a very important factor, although they appear to be constantly decreasing. According to the UNICEF website more than 60,000 children are born every day in India—that is one-sixth of global births. We may take a European country such as Italy to make a comparison: in 2018 about 1200 babies a day were born here. Perinatal mortality in India has dropped significantly in the last 25 years. In 2018, about 30 children died in India for every 1000 (in Italy 2.59), but in 1996 there were still 76 deaths for every 1000 births (WHO source). The reduction has been achieved by working on the safety of mothers and newborns, on the conditions that allow women to give birth in protected environments: most deaths of mothers and children occur in fact in the 48 h around delivery. Vast resources still go to infectious diseases, while the threat of chronicity is looming, and affects not only the elderly. As a tracer of epidemics we may take diabetes, as suggested by Gavino Maciocco in the book La salute globale (Global Health) [4]. The choice of diabetes is due to the fact that this disease occupies a middle position: towards the top of the curve we have risk factors and obesity in particular, towards the bottom there are cardiovascular diseases and a series of related conditions (from kidney failure to blindness), more frequent among diabetic patients than in the rest of the population. In India, type 2 diabetes is more frequent and is correlated with lower body weight than in other countries. The most striking fact is that the rapid increase in diabetes and insulin resistance in India is not only linked to an increase in obesity: both abundant nutrition and malnutrition of pregnant women are to blame. A real paradox. The fact that low birth weight is a risk factor for the development of type 2 diabetes, especially in women, was the subject of an article published in 2015 [5]. It means that in order to

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effectively prevent diabetes, it is necessary not only to improve people’s diet and enhance physical activity but also to improve nutrition for pregnant women. Diabetes in India starts earlier, at a younger age, and has less to do with obesity. ‘You have sugar’. Being diagnosed with diabetes in India [6]: is a lively story describing the ordeal of a young man, Siddarth Sharma, with type 1 diabetes. Also in India, it is thought that diabetes is caused by eating too much sugar; to combat it, herbs and Ayurvedic medicine are used. Erroneously, the protagonist of the story is first treated with metformin (a therapy for type 2 diabetes) and herbs; he does not get better, on the contrary he keeps getting worse. He finally goes to see an endocrinologist and after a couple of minutes leaves with an insulin-based therapy. The story sums up the prejudices against this disease in India: it is believed that diabetics die soon, that there is only one type of diabetes, that it is better not to ask too many questions, that it is the fault of diabetics if they have developed the disease, it is shocking to see someone injecting insulin; diabetics are not ‘marriable’; to refuse food being offered is offensive. The narrator struggles to understand how he, a rational person who knows how to organise himself, could have been so susceptible to alternative treatments that only made his condition worse. Ketoacidosis, retinopathy neuropathy, nephropathy and coronary heart disease and foot infections are the sad consequence of poorly managed diabetes, so the question is: can we afford to be ignorant and continue spreading false information about the disease? The poorer a country is, the less we can afford the price of ignorance. The conclusion is that prevention should begin in school. Siddartha is a young man and type 1 diabetes affects only 10% of Indian diabetics, but the difficulties in finding the right treatment and the prejudices related to the disease are similar in other cases. In fact, there is a strong prejudice against diabetes also outside India. In Italy, for example the disease is still considered as ‘a marker of diversity, associated with death, impotence, infertility, indicative of social class—a direct correlation between education, income and the evolution of diabetic complications has been demonstrated—and type of work, so much so that in many cases these prejudices force people to deny they have disease’. This is what we read on the Italian website dedicated to diabetes [7]. How can such a huge nation react to this challenge? The Kaiser Permanent Model (Kaiser Permanent is one of the largest non-profit Health Care Plans in the United States) clearly shows that 5% of the most severe cases absorb 70% of the resources. The challenge is: not to allow these cases to reach such an advanced stage, but act much earlier, with a model centred on prevention. In India, it is very difficult to access treatment, especially in rural areas, and in the enormous slums of big cities, because of the lack of infrastructure. The National Health Service is free and is used by the less well-off. The rich generally seek private healthcare. However, the figures in Fig.  8.1 show that the service is clearly unable to guarantee universal coverage. The guidelines that apply in the Western world are not always applicable throughout India. In particular, they do not apply to poor people, for whom access to care, from a logistical and economic point of view, is an insurmountable problem, especially in rural areas. Chronic diseases such as diabetes are not funded as much as AIDS, for example. The costs of treatment are an important factor and often push people to seek

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Tertiary care District hospitals Community health centers Primary health centers

sub-centers Village level Institutions

Fig. 8.1  In the rural public health system, primary health centers cater to a population of 30,000 (20,000 in tribal areas), and are envisaged as centers for “integrated curative and preventive health care”. These centers are the first contact point between a medical doctor and community in the public health system. A primary health center is to have 13–21 staff, depending on its outpatient load; at least one Allopathic doctor (who is the Medical Officer in Charge) and several support staff. As on 31.3.2017 there were 1,56,231 sub-centers; 25,650 primary health centers; 5624 community health centers; 1108 sub-divisional hospitals and 779 districts hospitals in the country. Source: Government of India, Ministry of Health and Family Welfare, Bulletin of Rural Health Statistics 2016–17. (*Variation among states in the exact structure of the tiered system exists)

alternative, non-validated herbal therapies. Also, not all general practitioners treat diabetes and patients are often sent to specialists who in many cases cannot be reached. There are many barriers [8], from efficacy and safety, convenience and lifestyle to education and possible solutions with regard to the treatment of diabetes in India, like in the rest of the world: Patients may fear hypoglycemia and find self-monitoring painful, they may travel often and find it complicated to do several injections a day or they maybe not aware of diabetes and its complications. There maybe religious sensitivities and requirements like fasting. So there should be multiple modes of communication to spread awareness and the therapeutic modalities should be sensitive to sociocultural factors, to make therapy and monitoring as easy as possible. Although adapted to the Indian context, many recommendations based on guidelines are difficult to implement in the context of rural and in particular urban poverty. Poverty in India means living in a slum. When the coronavirus pandemic struck in April 2020 the Financial Times noted that in India 101 million people live in slums, 24% of the population. The definition of slums given by the United Nations is: ‘highly populated urban residential area consisting mostly of closely packed, decrepit housing units inhabited primarily by impoverished persons.’ In Mumbai, 40% of the population lives in slums (Fig. 8.2). Of course, most of the inhabitants are poor. Personal conditions

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Fig. 8.2  A slum in India during the 2020 coronavirus pandemic. (Credit left panel: Jan S., shutterstock.com; Credit right panel: Manoej Paateel, shutterstock.com)

vary. Mumbai is an extremely expensive city and some workers actually choose to live in a slum to save on rent and utilities. Clearly, in this context, it is impossible to keep a safe distance and even wash one’s hands, as has become essential since the start of the coronavirus pandemic. In situations such as these, where does one locate chronic diseases, such as diabetes? An article published in 2018 [9] seeks to understand the main difficulties of slums and the way problems overlap, which contributes to the complexity of this scenario. It concludes that four main social factors impact the health of people living in poverty: dirty water, low education, physical inactivity and transportation. These elements cause situations to further deteriorate and chronic disease plays a complex role. The low level of education is linked to cardiovascular diseases. The lack of public transport leads to increased use of mopeds, which reduce physical activity: this leads to an increased risk of cardiovascular disease and diabetes. Standing in line for hours to collect water increases stress and blood pressure. The analysis of the complexity of these interactions could motivate politicians to change the situation. Socio-economic and epidemiological changes should not stop in the poorest part of society, where people live in slums and in poor rural areas. The risk factors of diabetes are the same everywhere: a sedentary life, a poor diet, excessive weight and heredity. To this one must add that there is no public healthcare system. In Dharavi, the largest slum in Mumbai, in India and in the world, there are reports [10] of many unregistered improvised healthcare services that operate in the field of diabetes. Here many have been diagnosed with diabetes, though at an advanced stage, and are given unregistered over-the-counter medicines. Poor diabetics pay for this delay with their lives. To apply the Kaiser Permanente Model would be unthinkable here, a model that dedicates 70% of resources to the top 5% of severe cases. Change can only happen through healthcare policies and government action. Jeremy Ang’s [9] article comes to the same conclusions as those reached by Julian Hart in England in the 1960s: ‘India will have to radically transform her model of healthcare delivery from one that is reactive to one that is anticipative, from a system that treats episodic illnesses to one that conducts periodic checkups. Policy will also have

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to be “health-centric” rather than healthcare-centric. For a country as large as India, the only way to bring this up to scale while improving efficiency and effectiveness is via a “Primary Health Care approach”. (…) A more proactive role in preventing the urban poor from falling ill is needed’. The complexity of interventions is linked to socio-economic conditions and, in particular, to access to education and drinking water. An image of the Dharavi slum illustrates the fact that encouraging physical activity in an environment where streets are often no wider than 70  cm and temperatures are very high makes no sense, especially in the case of women who very often never leave the slums. An epidemiological change has already taken place, and also in the post coronavirus phase the number of chronic diseases will be higher than acute and communicable ones. There are no easy solutions to this: India, which is both very rich and very poor, requires specific interventions aimed at different contexts, and it must be noted that a shift towards an anticipatory and proactive approach can be found both in rich and in poor countries. Julian Hart spoke of initiative anticipatory medicine, which requires a different organisational and conceptual model. And healthcare structure to intercept people who might not know they are ill. Today the coronavirus pandemic forces us to admit that everywhere the territorial dimension has been neglected. The much discussed triad applicable to infectious diseases—test, trace, treat—can only work with a functioning territory: for example the same network that tracks and follows diabetics can be used in cases of infectious emergencies. It requires organisational creativity outside hospitals. We have seen strong healthcare systems collapse, for instance in Italy, Spain, Great Britain and especially in the United States, where the focus was on the large hospital network because that is where the ill went for help. It would have been necessary to reinforce the system and implement prevention at a territorial level, to isolate new infections and flatten the curve which overwhelmed hospitals, and caused situations we thought were unthinkable—trucks carrying corpses in Bergamo, Italy, and refrigerator cells being used for bodies in New York. Territories and medicine for chronicity are intertwined with acuity, especially with infectious diseases, and it is wrong to focus on the various specialised branches inside public hospitals or private clinics of excellence. We now see that the lesson of chronicity also applies to an acute context, it is an opportunity for improvement. We will leave India and the arduous effort to find a balance between the battle against acute illness and chronicity with an image we borrow from Salman Rushdie’s novel Midnight’s children written in 1981 [11]. The book is dedicated to a thousand Indian citizens born on the night that marked Indian independence from the British Empire, proclaimed August 15, 1947. The biography of the protagonist also includes the story of his grandfather, who was a doctor at the beginning of the twentieth century. Aziz is a resourceful young man, he studied in England and knows the medical art well. He is summoned by a local landlord who wants to have his daughter examined. Since she is ‘a good girl’, she cannot show her body to strangers. The young doctor uses a trick to examine her without looking at her: a sheet with a hole

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in the middle, a rudimentary circle about 18 cm wide, held up by two maids. Each time the father instructs him about which part of his daughter must be inspected; the body segment will be placed in correspondence to the hole. The doctor will then be able to carry out his examination. In the course of the next 3 years Naseem Ghani, the landowner’s daughter, contracts an impressive number of minor illnesses. Aadam Aziz’s visits to the bedroom with the shaft of sunlight and the three lady wrestlers became weekly events; and on each occasion he was vouchsafed a glimpse, through the mutilated sheet, of a different seven-inch circle of the young woman’s body. […] So gradually Doctor Aziz came to have a picture of Naseem in his mind, a badly-fitting collage of her severally-inspected parts. This phantasm of a partitioned woman began to haunt him, and not only in his dreams. Glued together by his imagination, she accompanied him on all his rounds, she moved into the front room of his mind, so that waking and sleeping he could feel in his fingertips the softness of her ticklish skin or the perfect tiny wrists or the beauty of the ankles; he could smell her scent of lavender and chambeli; he could hear her voice and her helpless laughter of a little girl; but she was headless, because he had never seen her face. At this point, it is all too clear that illness was a pretext to conceal a desiring subject, and the perforated sheet was a trick to inspire a corresponding desire in the doctor. It is easy to imagine the rest of the story since it is about the grandfather and grandmother of the novel’s protagonist. The sheet with the hole is the image we want to take with us. We can apply it to a type of medical practice that focuses on a single part of the body, or on a specific acute pathology, leaving everything else in the dark. The human condition, be it healthy or ill, is one, it is not the sum of individual parts, analysed separately. Acuity and chronicity both accompany the trajectory of individuals, as well as that of entire countries. From midnight to noon; from noon to the following midnight, if and when it comes.

References 1. Patel SA, Cunningham SA, Tandon N, et al. Chronic diseases in India—ubiquitous across the socioeconomic spectrum. JAMA Netw Open. 2019;2(4):e190404. 2. https://www.who.int/chp/chronic_disease_report/media/INDIA.pdf. 3. Nations within a nation: variations in epidemiological transition across the states of India, 1990–2016 in the Global Burden of Disease Study. 2017; 390(10111):P2437–60. 4. Santomauro MG. La Salute Globale. Carocci Faber editore: Rome; 2017. 5. Song Y, Huang Y, Song Y, et  al. Birthweight, mediating biomarkers and the development of type 2 diabetes later in life: a prospective study of multi-ethnic women. Diabetologia. 2015;58:1220–30. https://doi.org/10.1007/s00125-­014-­3479-­2. 6. Sharma S. You have sugar, being diagnosed with diabetes in India. https://beyondtype1.org/ sugar-­diagnosed-­diabetes-­india/. 7. Portale diabete. https://www.portalediabete.org/pregiudizi-­diabetici/.

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8. Wangnoo SK, Maji D, Das AK, Rao PV, Moses A, Sethi B, Unnikrishnan AG, Kalra S, Balaji V, Bantwal G, Kesavadev J, Jain SM, Dharmalingam M.  Barriers and solutions to diabetes management: an Indian perspective. Indian J Endocrinol Metab. 2013;17(4):594–601. https:// doi.org/10.4103/2230-­8210.113749. PMID: 23961474; PMCID: PMC3743358. 9. Lumagbas LB, et  al. Non-communicable diseases in Indian slums: re-framing the Social Determinants of Health. Glob Health Action. 2018;11(1):1438840. Published online 2018 Mar 28. 10. Ang J.  Primary healthcare initiatives for Dharavi India. https://muhi.org.au/primary ­health-­care-­initiatives-­for-­dharavi-­india/. 11. Rushdie S. Midnight’s children. London: Jonathan Cape; 1981.

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Asthma Can Be Lethal (But It is Also Possible to Live With It)

Rome, an 11-year old died from an asthma attack while blocked in traffic on a highway. The boy was in the car with his mother and aunt, they were on their way to the hospital. Despite the intervention of a traffic patrol and emergency medical staff who arrived in two ambulances and one medical car, unfortunately the boy passed away. An investigation for manslaughter was opened. The boy didn’t make it, he stepped out of his mother’s car saying ‘I can’t breathe, I’m suffocating’. The woman, Ioana, and his aunt, tried to help the boy but saw him turn cyanotic and lose consciousness. Around them, cars were stuck in traffic like on any weekday on the Cristoforo Colombo (Corriere della Sera, April 19, 2019). An 8-year-old boy died of asthma. For 1 month the parents slept next to the boy’s body. The couple told the judge: ‘We thought he was asleep, we wanted to wake him with prayer.’ The couple is charged with negligent homicide. The parents, who didn’t believe in traditional medicine, allegedly treated their son with ‘Chinese remedies’ and homeopathic methods (Cronaca di Girona, December 1, 2017). An 11-year-old boy died after suffering an asthma attack. The town of Osio Sotto is mourning the death of an 11-year-old boy, Massimiliano Bassi, struck by a fatal asthma attack. Attempts to revive him at the Ospedali Riuniti in Bergamo, where Massimiliano was taken by his family on Saturday evening when he fell ill, failed. The 11-year-old boy, who had been suffering from breathing problems for a long time, lived in Osio Sotto with his father, his older brother and his grandmother. His mother passed away 4 years ago. The funeral will be held in the afternoon (L’Eco di Bergamo, 17 December 2008).

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_9

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We do not know the clinical details of these three unfortunate cases. The media reports point at faults such as the child being treated only with prayers, the parents not believing in scientific treatment and relying on Chinese herbs and homeopathy. Reality however is much more complex. Hardly any attention is ever given to the fact that treatment may not have been prescribed because the disease went undiagnosed, or that it may not have been followed, perhaps because the parents did not believe the prescribed medication would work. The fact remains: asthma continues to kill. A recent article by Mukherjee [1] estimates a mortality rate of 2.0–2.4/100,000 inhabitants in the United Kingdom, i.e. 1250 people a year. In Germany [2] the mortality rate is 1.4 for females and 1.0 for males every 100,000 inhabitants, a total of 1050 people per year: these are too many, often avoidable, deaths. The causes are multiple: one near-fatal phenotype of asthma is particularly feared because it rapidly degenerates into a serious condition within a few hours and sometimes only minutes, leading to intubation and/or hospitalisation in intensive care. It is estimated that each year about 5  in 100,000 asthmatics suffer an almost fatal attack [3]. Statistics are hard to compile because many people die at home, at work or on their way to the nearest Emergency Room. Particularly aggressive respiratory viruses or bacteria are also among the causes of death. In other cases, people simply looked for help too late. But many extreme emergencies and probably many deaths could be avoided if all people with asthma had an action plan, that is: simple instructions on what to do in case of an emergency. Special consideration should be given to people who ‘forget’ to take their medication because they are in denial, not to mention those who are embarrassed to admit having the disease. An episode of the TV series Lost is very instructive in this regard. Shannon, one of the survivors of the plane crash who lives on the island, has an asthma attack. Having lost her luggage Shannon does not have her asthma medication. However, her friend reminds her that she has always been ashamed of her condition, and she did not have the medication with her in the first place. He was the one who often had to carry it for her. Shannon starts to panic, and someone in the group tries to calm her down by telling her that the asthma is only in her head, that if she breathes slowly the attack will pass. Of course, often attacks do pass; but not always; and tachypnoea—fast breathing—and hyperventilation can bring on bronchospasms. On the whole, the episode of Lost is not very educational, it emphasises the idea that ‘asthma is only in your head’; it would have been enough to say: ‘asthma is also in your head’. By reducing the anxiety brought on by the fear of dying, the psychological component can be contained. The episode was watched by millions of people, and we know how important subliminal messages are. Anyway, the next day one of the survivors finds a herb in the jungle that can help: what a fortune this is for Shannon, who will not have to rely only on her head to breathe... Marcel Proust suffered from bronchial asthma at a time when there were no ERs, no emergency medication, let alone emergency specialists. Proust had to self-­ manage his condition. He did this by leaving notes to his faithful maid Celeste that illustrate how careful he was in avoiding what today we call trigger factors: I’m so hot, this incessant coughing is making me sweat. I’ll try to drink some hot herbal tea. Warm, but not heated. The fruit mustn’t be too ripe (perhaps

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some of your grapes)... I must have coughed three thousand times. I have no shoulders, no stomach, nothing left. It’s hard to believe. I need warm underwear and wool sweaters. See to it. The underwear has a pungent smell that makes me cough unnecessarily. I hope you’ll take my orders into account, otherwise you shall irritate me. During an asthmatic crisis, the subject is often unable to speak. What a relief emergency medicine is in this situation! It does not matter if doctors act hurriedly, they do so for the patient’s sake. We are all convinced of this because we have watched medical dramas on TV based on stories that preferably take place in hospitals and ERs. There is no need to have a conversation with a patient while doing an IV: the important thing is that it works. It works so well that most of the times the patient walks out of the hospital on his or her own feet. The critical event has passed. I think Proust would have appreciated the advantages that medicine can offer in an emergency (Fig. 9.1).

Fig. 9.1  Marcel Proust (1871–1922). While writing In Search of Lost Time, Proust spent almost every night in a freezing cold room wearing numerous coats: today we would call this a state of emergency. The writer had in fact given orders not to light the fireplace even in the coldest weather because he had understood that the pollution this produced (today we call this indoor pollution) worsened his condition. (Credit: Otto Wegener (1849–1924) derivative work: Morn, Public domain, via Wikimedia Commons)

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Proust’s times have passed, and also the pathology he suffered from has changed. Why is it necessary to recount dramatic facts to describe the function of educational therapy? Because asthma has two sides: there is the more dramatic and emotionally involving side, and the slow, boring, exasperating chronicity. Asthma is a double-­ sided disease, which reflects the dilemma faced by every healthcare professional— doctor or nurse—but also by the person suffering from it. On the one hand, in an emergency, healthcare professionals are required to be effective and efficient, they must show that they are able to solve the situation thanks to all the skills they have acquired. In this condition, the patient is truly ‘patient’, i.e. passive, and willingly so, because the medical staff’s competence will solve the problem and allow the patient to live. On the other hand, we also have the type of medical examination during which a doctor will repeat the same treatment over and over again, and the night-time minor crisis, the boring crisis that keeps one awake, overcome with a little bronchodilator; the medication is always the same and the family members get used to this routine. A frequent comment made by an asthmatic wife about her husband’s behaviour is: ‘He doesn’t even wake up and I’m suffocating!’. People suffering from a chronic disease face daily ordeals: they can barely tolerate any kind of effort, so they might for example avoid walking in the mountains despite the fresh air. On the other hand, doctors who treat the same chronic patients and clients countless times—patients who complain of the same old problem but have failed to take the prescribed medication regularly—may regret not having pursued a hospital career, the kind of fast paced, satisfactory work, often carried out with efficient teamwork in hospitals, instead of having to deal with the same problems every day. Very few doctors started out wanting to become health educators or rehabilitators. So, in their relationship with chronic patients, doctors often find themselves in situations they have not been trained for; some become frustrated and cynical. ‘Bronchial asthma is a chronic inflammatory airway disease characterised by reversible airflow obstruction of the bronchi in predisposed individuals. The clinical symptoms are persistent coughing, shortness of breath, chest tightness and wheezing (asthmatic crises)’ [4]. This essential definition describes a potentially fatal disease known to us since ancient times. The causes of the disease are still not fully understood and a radical therapy is yet to be found. Asthma was on the rise from the mid-1970s across the world, presenting a high social cost. The reason for this considerable increase, especially among children, were unknown. The increase appears to have stopped. Until a few years ago it was thought that this increase was due to higher levels of indoor (smoke) and outdoor pollution. After the fall of the Berlin Wall, several comparative studies were carried out, comparing East and West Germany. One well-known study, carried out by Erika von Mutius, found fewer cases of asthma in the eastern part of the country, despite higher levels of air pollution and a much poorer lifestyle [5]. This research was summarised as the so-called hygiene hypothesis, debated around the world, which led to simplifications such as dirt is healthy or, put the other way around, sterile is harmful. A review of this hypothesis in 2012 [6] concludes that lifestyle elements that determine the exposure of children and their immune systems to

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various microbes at various developmental stages may explain why certain microbes found in household dust can protect against atopy. In other words, those who are more exposed to microbes, such as children growing up with animals in rural areas, will suffer less from asthma and allergies in the future. But there is no evidence that neglecting personal hygiene will improve a future asthmatic condition. Other studies have emphasised the genetic role, for example studying twins of parents with asthma, as well as the environmental component, in twins with healthy parents [7]. The idea of asthma as a psychosomatic disease has been completely abandoned, especially since gaining a greater understanding of inflammatory mechanisms. This of course does not exclude the existence of many different coping styles and ways in which the disease is experienced, based on the patients’ personality and history, family and social background. A psychotherapeutic approach can often be helpful, but not because the causes of the disease are psychological: some psychological or psychodynamic conditions, such as not having medicines at hand, can cause the situation to worsen and may lead to serious consequences. All this highlights how difficult it is to explain the causes of asthma. When a linear explanation of an illness cannot be offered, it is hard to induce patients to adhere to the therapy. There is no cure to eliminate asthma definitely, but we have very effective therapies to control the disease. Controlled asthma means: having no attacks, a respiratory function as close to normal as possible with greater resistance to stress, and quiet nights. With the inhalation therapies available today these goals are in most cases easily achieved. The exception is near-fatal asthma, mentioned above, which has different characteristics. It is estimated that over half of patients (30–80% when taking into account all diseases) do not follow the doctor’s prescriptions. There are numerous interpretations of this phenomenon. One explanation has emerged from a Censis report focusing on the Italians’ healthcare habits. The report’s findings are still valid today, even though they date to about 20 years ago [8]. The report shows that subjects prefer medical specialists or technicians to solve their problems. While an empathic, open and negotiating approach is very slowly emerging in the medical field, patients seem to prefer an outdated healthcare model in which all their problems are solved by an authoritative doctor. Or maybe modern patients have evolved towards a new role in which they appreciate the highest technical expertise on the part of the doctor, who provides the appropriate information, while the final decision on how to manage the disease lies with the patient, who has the right to consult other specialists (including, as we know, practitioners of so-called complementary medicine). Patients starving for air do not care if their therapy is evidence-based (based on proof of efficacy). Indeed numerous patients turn to alternative medicine and expensive treatments. They expect these specialists to tell them that the illness is curable, not that the disease is chronic and will persist, with ups and downs, for the rest of their life. The causes of non-adherence to therapy are even more varied and complex. Several phenotypes of non-compliance to therapy have been identified [9]: patient

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are not aware of the importance of following medication prescriptions for their health and long-term well-being; the therapy is too complex; patient are not lucid or have a cognitive deficit (this can happen with dementia); patients have personal erroneous, irrational or conflicting beliefs about the medication, or they simply are not convinced the medication is effective. I would add that patients sometimes have not internalised the idea of suffering from the disease diagnosed by a doctor; even when they have experienced difficult and dangerous episodes, they attempt to deny reality. It is obvious that all phenotypes of non-adherence may have different solutions, but they are seldom thoroughly analysed. Another cause of non-adherence to treatment is the poor training that many family doctors and paediatricians have received in the area of asthma. Both doctors and patients tend to underestimate this disease, relying—when needed—on the ER. Also, the lack of collaboration between emergency departments and territorial medical facilities is telling with regard to the two faces of medicine: emergency and success on the one side, territorial medicine, chronicity and defeat on the other. It is true that today new therapies for severe asthma, not manageable with standard therapies, are available. These are antibodies that bind to immunoglobulin E or interleukin 5, depending on the type of asthma. They should be administered in specialised centres; this is a long-term treatment that should be combined with other basic therapies. We are still far from finding a therapy to cure asthma completely with a short treatment. The catastrophic data on compliance has not changed in 20 years: only one in three patients adheres to therapy. When studying the problem more in depth, inconsistencies emerge, as demonstrated by a systematic review of the literature, published in 2015 in the European Respiratory Journal [10]. Out of over 2000 studies, only 23 were accepted because they met the quality criteria. Gradual adjustments to the therapy, aimed at providing immediate relief and at controlling the inflammation, are important for reducing the chances of recrudescence. Adherence to therapy is essential to maximise its benefits. Good adherence is related to a reduction in symptoms, mortality, direct and indirect costs and quality of life. Adherence is less than 50% in children and between 30 and 70% in adults, varying by country, ethnicity, age and gender. The low rate of adherence has been attributed to safety concerns about corticosteroids and inhalers (steroid phobia), associated with a lower growth rate in children and an increased risk of pneumonia. Adhesion is higher when corticosteroids are administered only once a day. It should also be pointed out that not all studies have confirmed a reduction in exacerbations of the disease in cases of increased adherence. Some patients self-reduce their medication without symptoms getting worse, while others show uncontrolled symptoms despite good compliance to therapy. It is striking that the inhalation technique is generally not monitored in studies, as the literature review shows. Thanks to my practical experience, I can provide an example of an elderly patient who sprayed the medicine designed for chronic obstructive bronchitis into his ear, because he was also suffering from external otitis...

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The asthmatic disease is complex and perhaps it is not even one single disease. Several phenotypes can be identified and, even if research is still underway, it is becoming clear that therapy should take this fact into account [11]. It is reasonable to admit that people suffering from this complex disease have reason to self-reduce the medication when they feel it is not helping them when the fear of side effects is greater than the benefits. As with many other diseases, we are working towards a precision therapy or, metaphorically speaking, a tailor-made therapy. This disease certainly requires lifelong therapy, but it is good to keep in mind that therapy can be adjusted.

References 1. Mukherjee M, Gupta R, Strachan D, et al. Asthma mortality in the UK and member nations between 2001 and 2011. Eur Respir J. 2016;48(60):4584. 2. J Health Monit. 2017;2(3). https://doi.org/10.17886/RKI-GBE-2017–049. 3. Seale J. Asthma deaths: where are we now? Aust N Z J Med. 1991;21:678–9. 4. Chung KF, Wenzel SE, Brozek JL, et al. International ERS/ATS guidelines on definition, evaluation and treatment of severe asthma. Eur Respir J. 2014;43:343–73. 5. Von Mutius E, Martinez FD, Fritzsch C, et al. Prevalence of asthma and atopy in two areas of West and East Germany. Am J Respir Crit Care Med. 1994;149(2 Pt 1):358–64. 6. Fishbein AB, Fuleihan RL.  The hygiene hypothesis revisited: does exposure to infectious agents protect us from allergy? Curr Opin Pediatr. 2012;24(1):98–102. 7. Latinen T, Rasanen M, Kapiro J, Koskenvuo M, Laitinen LA.  Importance of genetic factors in adolescent asthma: a population-based twin-family study. Am J Crit Care Med. 1998;157(4):1073–8. 8. Censis. La domanda di salute negli anni Novanta. Comportamenti e valori dei pazienti italiani. Milano: Franco-Angeli; 1998. 9. Cartabellotta A.  La non-compliance alla terapia farmacologica: strategie diagnostico-­ terapeutiche. Evidence. 2013;5(7):e1000051. 10. Engelkes M, Janssens HM, de Jongste JC, et al. Medication adherence and the risk of severe asthma exacerbations: a systematic review. Eur Respir J. 2015;45:396–407. 11. Pembrey L, Barreto ML, Douwes J, et al. Understanding asthma phenotypes: the World Asthma Phenotypes (WASP) international collaboration. ERJ Open Res. 2018;4(3):00013–2018.

Education as Therapy: A History of Failure?

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During the last decade of the twentieth century ‘asthma schools’ were created. Their aim was to spread the culture of therapeutic education for developing the patients’ ability to self-manage the treatment of their disease. In Italy, these activities were based almost exclusively on the goodwill and idealism of very few doctors, who often had to fight hard to find suitable space and time for the education of patients otherwise dedicated to diagnostic and therapeutic activities. Local public healthcare systems do not provide this service, so problems of cost and time inevitably arise. Very few ‘asthma schools’ appeared in Italy only for a few years; in some cases, they have become something else, for example medical conventions open to patients’ participation. With much enthusiasm, together with a fellow doctor and two physiotherapist colleagues, I started an initiative of this kind in the 1990s in a rehabilitation clinic in Rome. For over 2 years we ran ‘asthma school’ courses for children and adults. These courses took place in four 2 h-long sessions, where we talked about asthma and did small respiratory exercises, and practiced using the metered dose aerosol for asthma together; one session was dedicated to managing emergencies. Afternoons with children of different age groups were cheerful and noisy: parents, grandparents, nannies came; the children rolled on the carpets doing breathing exercises with the physiotherapists. We were well aware that physiotherapy is not the first approach to asthma, but physical activity creates a bond between people, including children. There was a lively exchange of ideas between the parents. Of course, not all asthmatics came for all four afternoons: not everyone can fit in an afternoon a week for 4 weeks. Unfortunately, we did not do follow-ups and control studies, as we were too immersed in our daily routines. After a while the school closed because of the lack of resources: none of the teachers were paid and the doctors’ working situation had changed. No public institution was interested in the initiative. I was left with the feeling of having shared technical information, but also emotions and intimate stories about what we call coping with the disease. It is a nostalgic memory. Today this kind of educational and informative function can be found in short videos and

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_10

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eBooks, such as the one by the Clinical Pedagogical Laboratory and Biomedical Research Association (Fig. 10.1). In other parts of the world, outside our national scenario, we may find interesting experiences. In Canada, for example educational self-management therapy is carried out immediately after a medical examination, by a specialised nurse. The nurse has the task of explaining and demonstrating the prescribed inhalation therapy, listening to the patients’ problems, and checking adherence. In fact, this kind of organisation improves adherence to educational programmes. And quite interestingly, the patient who turns to the Emergency Room in case of a crisis must prove that he or she has attended a course in an asthma school, which is free of charge. If the patient has not, he or she must pay for the ER visit. Participation in asthma educational programmes is generally low for a variety of reasons. Courses are scarce and available only in few centres; the programme is too complex and time-consuming; doctors are not trained for this type of activity. It is hard to predict who will participate in the programme and who will not; in fact, neither age nor the severity of the pathology are determining factors. It is well-­ known that the majority of patients are non-smoking women. It is thought that patients who adhere to educational programmes also comply more with the therapy to begin with, i.e. are motivated to treat their condition. These findings are discouraging because they indicate that it is harder to reach those most in need, with higher adherence levels. Despite a lack of results, insisting on the path of educational therapy for self-management is important. This is a path of close collaboration between health professionals on the one hand and patients, family and teachers on the other. Making these activities easier and more accessible, and perhaps part of the practice of GPs, as Boulet explains [1], would improve the situation. Scarce participation in educational programmes is also a consequence of the shift away from paternalistic Fig. 10.1  An example of an eBook on asthma. Despite the advantages of therapeutic education courses, particularly evident in the case of diseases such as asthma, eBooks and educational films have recently become more popular. Reproduced with permission from Ambra Onlus www. ambraonlus.it

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medicine, which was often convenient for doctors and patients, but is considered to be anachronistic by the culture of our times. Some of the obstacles in the way of a new paradigm such as educational therapy are directly attributable to patients. Patients may not feel the need to be treated, let alone ‘undergo’ such educational programmes. Of course, we would prefer to treat adult and aware patients, but one of the problems is that adult patients ‘don’t want to go back to school’. Various attitudes of patients hinder an educational approach. Here are some examples: –– People are convinced they do not suffer from asthma. Despite frequent night-­ time attacks, they deny having a problem. They insist on having other problems with their doctor, such as bronchitis or laryngitis, diseases that are more common and accepted. Denial of a traumatic event—such as a violent asthma attack or a chronic illness—is a well-known strategy. As long as patients are in denial they are not willing to participate in educational programmes where they will have to confront reality. –– People are aware they suffer from asthma, but are ashamed and will not tell anyone. An asthmatic person rarely shows up in public with an inhaler, especially in a society that denies disease and death, and in which asthma has a reputation of being potentially fatal (the disease may remind people of tuberculosis). –– People know they have asthma but are convinced that they will not suffer from it forever: they believe that the disease will pass. Patients listen to what doctors tell them but skip the word ‘chronic’, and continue to seek a miracle cure. This attitude is emphasised by mass media, which promises impossible cures with captivating headlines about a ‘vaccine that cures asthma’, or triumphant claims such as: ‘At last a pill will replace inhalers’. This attitude is also reinforced by the natural course of the disease, which can present long silent phases. –– People act like old-fashioned patients: they are nostalgic of authoritarian paternalist doctors who determine what the patient should do. Patients are not prepared to make the mental effort themselves. –– People have an irrational approach to illness. There are various coping strategies in this category. The magic version: the disease is a spell that must be broken. The guilty version: ‘What has happened is my fault, so it’s only right that I should be out of breath; and if this is a just punishment, I can’t be treated because I have to suffer the punishment’. According to another version of this, the disease is someone else’s fault: for example, when asthma arises in the workplace (excluding, of course, labour-related asthma): ‘If I didn’t work, nothing would be causing my asthma’. These are just a few examples of coping strategies. They are often not so clear-cut and change over time. It is important to allow patients to manifest these attitudes, especially if therapeutic education is conducted in group sessions (being cautious however not to slip into psychotherapeutic sessions, for which doctors are not trained).

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It is essential that chronically ill patients express what the disease means to them. The advantage of self-management education in groups is that different forms of coping emerge that can be compared without the doctor interfering too much, but also without losing sight of the ultimate goal of self-management: maximum patient well-being with minimum essential medication. This is why the patient must adhere to the therapy, which is easy and available for nearly everybody, at least in Europe. However, given the patients’ lack of enthusiasm for teamwork and the waste of time in ‘converting’ those who are already converted, perhaps it is best to return to a one-to-one doctor-patient approach or to assign the task to a trained nurse. This situation could influence and relax the patients’ approach. Guidelines have been developed in the field of evidence-based medicine to facilitate the patient’s relationship with the specialist doctor and the GP. Unfortunately, there are considerable communication obstacles in this area as well. The problem has been sadly highlighted by a study, known as the Philadelphia Story, that analysed how appropriate asthma treatment was after the publication of the guidelines of the World Asthma Project, promoted by the WHO (Report 95–3659, 1995) in the Philadelphia area. Prescriptions seemed to be less appropriate at the end of the project. Perhaps this was because the guidelines were too complex; in any case, they were not being applied [2]. This was confirmed by a 2016 study by Barbara Yawn [3] which documents the low adherence of family doctors to asthma guidelines. The latest asthma guidelines were published in 2018: it is an even more complex, more differentiated report containing 133 pages of guidelines, supported by references to over 600 bibliographic entries [4]. In this voluminous report, only four pages are dedicated to Guided asthma self management education and skills training (PART C); another three pages are dedicated to managing a relapse of asthma with a written plan. The report states that research is important and that there is more need for it, but overall the focus on therapeutic education is scarce. In the first box the four C’s are described: –– –– –– ––

Choose, choose the right device; Check, check the inhalation technique each time; Correct, correct if necessary; Confirm, i.e. every doctor should be able to use what he prescribes and not give messages such as: ‘Ask the pharmacy to explain it’ (where there might be a long queue...).

The report suggests identifying poor adherence to therapy. For this purpose, doctors are encouraged to ask empathic questions such as: ‘I am aware that many patients don’t follow prescriptions; how about you? In the past month, how many days have you been unable to do so?’ Therapeutic education, which aims at promoting self-management of the disease, does not always satisfy the patients’ desires. Some patients prefer to be managed instead of having to learn how to manage themselves, and opt for a trusted doctor to tell them what to do. Education in self-management is time-consuming both for doctors (or nurses) and patients. Patients may not see the point in devoting

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time to the disease, particularly when they have not yet come to terms with the fact they have a chronic illness. This is one of the reasons why therapeutic education is hindered in the process of becoming part of our traditional medical culture. This applies to asthma as well as to diabetes and to many other chronic conditions. Fortunately, however, from 1990 to 2015 deaths caused by asthma have fallen by 26.2% (from 0.55 to 0.4 million deaths), although according to a study published in The Lancet in 2017 [5] prevalence increased by 12.6% (from 318.2 to 358.2 million) over the same period. We do not know what to attribute the fall in mortality to: certainly not to a spread of educational programmes across the world. Perhaps it is more about new and more effective medication and simpler devices; or we can assume that treatment is more accessible to a larger part of the world population, following better diagnosis. Neither the magic pill nor genetic engineering interventions to eradicate asthma are in sight. We are faced with the reality of a sharp increase in this disease among adults, while at the same time it seems to have stopped spreading among children. Children need self-management therapy, involving parents, grandparents, babysitters and, above all, teachers in schools. Even though we still do not know the causes of the phenomenon, let alone its future developments, we have good reason to believe that only the correct treatment of children today will prevent an army of serious asthmatic patients tomorrow. Asthma, like all chronic diseases, is a complex disease. Perhaps, as we are beginning to think, it is not even one single disease. The context in which patients experience chronicity is also complex. What we can do is enhance the dialogue between bronchopneumologists, asthma super-specialists, family doctors and paediatricians; between specialists and patients; between emergency departments and local healthcare departments. Educational therapy for self-management could be a key to this enhanced communication network. In addition to doctors trained also in educational therapy, the national healthcare system should acknowledge that this is not only cost-saving (as is amply demonstrated) but also the beginning of a deep cultural change, which is necessary to face a future characterised by the increasing numbers of patients suffering from chronic diseases. Educational therapy seems to be a fascinating solution, but so far it has not been sufficiently implemented, no funds have been allocated for this, and it is often based on the goodwill of doctors. The little attention paid to chronicity—something always regarded as someone else’s problem—does not help to increase healthcare initiatives in this area.

References 1. Boulet L-P.  Asthma education: an essential component in asthma management. Eur Respir J. 2015;46:1262–4. 2. Lang DM, Sherman MS, Polansky M. Guidelines and realities of asthma management. The Philadelphia story. Arch Intern Med. 1997;157:1193–200. 3. Yawn BP, Rank MA, Cabana MD, et al. Adherence to asthma guidelines in children, tweens, and adults in primary care settings. A practice-based network assessment. Mayo Clin Proc. 2016;91(4):411–21.

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4. https://ginasthma.org/gina-­reports/. 5. GBD. 2015 Chronic Respiratory Disease Collaborators. Global, regional, and national deaths, prevalence, disability-adjusted life years, and years lived with disability for chronic obstructive pulmonary disease and asthma, 1990–2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet Respir Med. 2017;5:691–706.

Primary Care, Incremental Care and Initiative Anticipatory Healthcare

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As far back as 1971 Julian Hart, a British doctor who worked as a general practitioner (GP), published an article in Lancet titled ‘The Inverse Care Law’ [1]. The article claimed that the availability of healthcare is inversely proportional to the needs of the population served. This law is more strongly perceived in societies where medical care is most exposed to market forces. Starting from this intuition, a model called ‘Anticipatory Healthcare’ was developed [2]. The main protagonist of this model is primary medical care, whereby time spent with one’s doctor is guaranteed, some roles are covered by trained nurses, and defaulters, that is patients who do not show up for checkups, are followed with direct solicitations. In the town of Glyncorrwg Julian Hart combined anticipatory care with the reactive care already implemented within the National Health Service. Twenty-five years after its first application, this model proved to be a remarkable success, based on the comparison with a similar village in nearby Wales: premature mortality had been reduced by 28%. This innovative approach is also explained in a Spanish article published in 2017, [3] which uses the tale of the owl and the lark. The two metaphors serve to describe the timeframe and methods employed to identify and treat a chronic disease. Mrs. Lark goes to the doctor and says: ‘I feel tired, I go to the bathroom often, I’ve lost weight and I’m always thirsty; sometimes my vision is blurred. It’s nothing serious, but I thought I should tell you’. Mr. Owl comes into the doctor’s office and puts the hospital discharge papers on the doctor’s desk, saying: ‘I’m sorry, I never came to see you but then I got sick and was taken to hospital’. The discharge papers mention diabetes, retinopathy, nephropathy, polyneuropathy and leg ulcer—all consequences of diabetes that was not treated in time. Continuing with the metaphor, we may say that a GP must behave as he does with the lark, that is treat chronicity at the onset. This type of medical care is not a spectacular one, but it does allow to achieve very significant results. Since the mid-1990s, the academic field has put forward numerous proposals on how to improve care for chronic patients. Edward H. Wagner, of the MacColl Institute for Healthcare Innovation, has published an article on how to improve © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_11

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treatment of chronic disease. Together with his collaborators, he developed the Chronic Care Model (CCM) [4]. It is a six-point model that includes community resources, the health system, self-management support, delivery system design, decision support and clinical information systems (Fig. 11.1). In this ideal world, an active and informed patient comes into contact with a prepared and trained team: a team that is proactive, meaning able to anticipate. The CCM has been adopted since the 1990s in various contexts. In the meantime however the field of healthcare has become more complex due to the increasingly frequent condition of multimorbidity. The problem posed by the coexistence and interaction of multiple chronic conditions (MCC) was first recognised in 2009: a condition that in the US affects three out of four people aged 65 and over [5]. This comes with the realisation that some patients are not able to carry out all the tasks they have been assigned in order to manage their problems, both logistically and financially [6]. A solution has been proposed by ‘Minimally disruptive Medicine’ (MdM). The slogan of the programme is ‘A care that fits’: its method is aimed at disrupting the patient’s life as little as possible, by identifying treatment priorities. Such an approach takes into account different problems and tries to help patients affected by multimorbidity to work on these priorities, providing support. Those with a relative who suffers from a chronic illness know intuitively what we are referring to. The 80-year-old lady who has had colon cancer, but is also diabetic,

Chronic Care Model Community

Health System Health Care Organization

Resources and Policies SelfManagement Support

Informed, Activated Patient

Delivery System Design

Productive Interactions

Decision Support

Clinical Information Systems

Prepared, Proactive Practice Team

Improved outcomes

Fig. 11.1  Chronic care model. ©Gee PM, Greenwood DA, Paterniti DA, Ward D, Miller LMS, The eHealth Enhanced Chronic Care Model: A Theory Derivation Approach, J Med Internet Res 2015;17 (4):e86, DOI: https://doi.org/10.2196/jmir.4067. [This figure is part of an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included]

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hypertensive and cardiopathic is not an infrequent case. If she is also somewhat depressed or begins to have cognitive problems, how is she supposed to cope with all this? In this sense, CCM is viewed as being outdated or has been integrated with the complexity model. With age, and because people in general live longer, chronicity is no longer singular, it is about various chronicities overlapping. The broad context in which today’s medicine must be rethought, in which the medicine of tomorrow, in particular, must be rethought, is constituted by the dichotomy of the medical practice that focuses on acuity and that which focuses on chronicity, which also involves a contraposition between hospital and territorial organisation. Chronicity and multimorbidity evoke complex scenarios, which will be even more complex in the future if we consider that people are increasingly alone and present important cognitive problems in old age. Who can cope with such a complex clinical condition? An article by the US surgeon Atul Gawande, which was published in 2017 and had a very wide circulation, attempts to provide an answer. Gawande is known as a brilliant disseminator of medical issues. Already the titles of his books constitute real programmes for medical reform: Better: A Surgeon’s Notes on Performance; The Checklist Manifesto: How to Get Things Right; Being Mortal: Medicine and What Matters in the End. The article we refer to here, originally published in the New Yorker, is titled ‘The heroism of incremental care’ [7]. His interest focuses on the medical care provided by general practitioners and its relationship with ‘heroic’ medicine. His observations are also very relevant to our topic. In the article, Atul Gawande recalls the great breakthroughs of medical science: the discovery of antibiotics, vaccines, which have eliminated diseases that once only God seemed able to cure, the first major surgical interventions. Doctors have became saviours, and the health care system seems to be organised like a fire brigade. Among the young people who chose the medical profession there are many who opted for this path precisely to be saviours, firemen who, instead of putting out fires, extinguish illnesses. However, we are invited to go beyond this ideal model: what makes the difference in the long run, in fact, is above all territorial medical care. Countries that have a greater number of general practitioners have a lower mortality rate, in particular infant mortality, fewer deaths from cardiovascular incidents linked to strokes and heart attacks. In Spain [2] a public health intervention has demonstrated that building more doctor’s offices, increasing visiting hours and free home visits, leads to halving the mortality rate over a period of 10 years. This is exactly what Julian Hart demonstrated at the time with anticipatory and reactive health care at Glyncorrwg. The data is solid. At this point we may ask ourselves: what do the interventions and the ability of a general practitioner consist in? It seems that the first reason behind lower mortality rates is that the patients know their physicians, who visit them regularly for various problems. There is familiarity and doctors are accessible. It is widely proven that patients are less hesitant to make an appointment, which means that a potentially serious illness is diagnosed earlier. The most important difference between first aid medicine and general practice is in waiting time. In the ER

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all tests can be requested on the spot and results are available almost immediately. With general medicine, on the other hand, it is necessary to wait, and this involves observation, it involves excluding one thing before moving on to the next one, so in this sense waiting is crucial. Also, many things fix themselves. Let us take one of the most common symptoms: a cough. It maybe caused by a trivial viral infection of the airways, what we call a cold; or it could be pneumonia, tuberculosis, or in these days Sars Covid 19, or what everyone is terrified of, what people always want to rule immediately: lung cancer. Anxious patients make an appointment with a specialist after 3  days of coughing to find out what is causing the problem; someone else, who pays less attention to his or her symptoms, can cough for months, lose weight, and finally be dragged to see the doctor—late—by a family member. Behind every cold there might be a potentially severe and perhaps even fatal pneumonia. But GPs cannot send everyone for an X-ray, a CT scan and blood tests during the winter months. The GP will examine a patient, and, based on the symptoms, if for example it does not seem like a common cold, might ask the patient to come back. It might be that patients themselves ask to come back because they are not feeling any better. If during the first visit there are no obvious signs or symptoms indicating something serious, the GP will wait before suggesting an X-ray, because he or she knows that—with or without medical assistance—the common cold will last a week. However, the GP will say so only after having examined and reassured the patient. A doctor can tell when something more serious is going on: a high fever with tachypnea and tachycardia, or a state of confusion caused by pneumonia, for example and will decide whether it is better to treat the patient at home or in a hospital. The ‘incremental’ medicine of Atul Gawande consists in checkups, evaluations, advise and reassurance, eventually also prescriptions. What patients want, obviously, is to get better right away. Nobody wants to miss work, indeed illness disrupts our daily routine and our family life. A GP knows how to explain to patients when things can be done quickly and when things need more time. As for the patients, on the other hand, they must be familiar with the GP, they must trust the GP and the evaluation being made and know how to wait, taking one step at a time. Above all, a GP must be accessible: visiting hours must be longer, perhaps even a reform is needed to set up more associated clinics or so-called health houses—in Italy ‘health houses’ are places where it is possible to access first aid for small problems, GPs and nurses are always available during the daytime. This is the opposite of the medical practice that focuses on first aid, also in the case of small emergencies: people go to the ER for small abscess, to have wax removed from their ears, or even for a cough, to know what is causing it. Because the ER is the place where everything can be diagnosed and treated. Plus, it is free. Perhaps a radical organisational change would benefit everyone. It is not easy to describe the kind of intervention that GPs carry out. Their practice is made up of a series of elements that go from knowing the name of a patient, who visits steadily over time, maybe for the whole of his or her life. There is more. Atul Gawande uses a powerful metaphor. He compares our body to the bridges of the United States. Many bridges in the United States are old, they were built for a

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different kind of traffic. After the well-known Silver Bridge accident in 1967, in which 49 people died, the federal government made an inventory of 600,000 public bridges, and discovered that about half of them were at risk of collapsing, mainly because of modern traffic. It was calculated that by investing adequately in maintenance, it was possible to extend the life of these old bridges for up to decades, which was less expensive than rebuilding them. Still today there are many dangerous bridges, because funds are constantly used to build new ones. Every year one bridge out of a thousand collapses and 4% of accidents result in people dying; but since there are no significant protests, the level of risk is considered acceptable. For a politician it is much more advantageous to build new bridges: a new bridge gives much more visibility than one that has not collapsed thanks to maintenance. These considerations have become extremely topical in Italy following the collapse of the Morandi Bridge in Genoa. The metaphor of bridges used to speak of the ‘cracks’ caused by age, by the ‘wear and tear’ of life, is a useful one. Today it is estimated that at a global level about a billion people suffer from hypertension and only 14% are adequately treated. The treatment of blood pressure, which requires years of checks and adjustments, allows to prevent dementia, strokes and heart attacks. In the past it was not clear what the risk of cardiovascular diseases was, we did not even know that smoking greatly increases the danger of developing cancer, not only lung cancer. Today we know these things and incremental medicine makes ‘maintenance’ possible. Adjusting blood pressure is one of these interventions. It can be very effective, but requires checkups at least once a year, visits to the cardiologist; perhaps even in summer, when the heat lowers one’s pressure so much one is tempted to do without medication. Blood lipids need to be checked. Of course, there is also much controversy about normal values, about the pharmaceutical industry that would like to have most of us on statins. The role of an informed general or incremental practitioner is to distinguish between those who need them and those who can do without. Then there are the levels of sugar in the blood: today diabetes is on the rise all over the world, especially in Asia and Africa, obesity is growing and the connection with various types of sugar is clear. It is hidden in snacks, packaged with corn syrup, in sweetened sodas and in juices; it is even added to ham. Paediatricians, who struggle to contain childhood obesity, and dentists have declared war on sugar. But the food industry is powerful. However, it is also true that this industry makes changes in response to those who are informed. We may think of the wide range of gluten-free products now available, purchased also by those who are not intolerant and who do not therefore really benefit from them. Incremental medicine may also mean visits with specialists. Let us take pneumology, which is my field of specialisation. Smokers, but also non-smoker, with chronic bronchitis are treated and controlled using spirometry, but also images. An anti-obstructive therapy is started, when needed: it reduces exacerbation and improves dyspnea. Exacerbations are treated with medication; if the condition worsens despite the measures taken, the specialist might start therapy with oxygen. Continuous contact with the specialist prevents hospitalisations for acute events. We

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may also take the case of second-generation pneumological patients: the case of someone who has inherited the genes from his asthmatic mother, and who is treated by the same specialist. The same may apply to the cardiologist who follows a person for high blood pressure. Sometimes a patient can remain stable for the rest of his or her life, and nothing serious happens. But if a patient is at high risk, the specialist will probably prescribe other tests, such as an echocardiogram, possibly a coronarography, or will consider replacing a valve. Following surgery the doctor will accompany the patient during rehabilitation. Of course, an ‘incremental specialist’ has a cost. This type of specialist is not always available in the public healthcare system; however, it might be possible to rely on a collaboration between the specialist and a general practitioner who will carry out ‘adjustments’ when possible, and ask for the specialist’s view only when needed. General incremental medicine can warn people whose sugar levels are just beginning to rise to avoid sweet food and too many simple carbohydrates and encourage them to exercise more. Small interventions can delay the onset of actual diabetes sometimes for years. Eating in a certain way and not smoking prevents acute events, and in certain cases the disease itself, as in the case of diabetes. In the case of cancer things are more complicated. Prevention is still important, people should not smoke, they should avoid consuming excessive quantities of alcohol, eat sugar and red meat moderately. In this context, incremental medicine might consist in a general practitioner phoning his patients and giving them a ‘gentle nudge’: encouraging them to undergo, for example screening for cancer of the colon, with a colonoscopy—a medical exam that is not frequently done—or suggesting a genetic test in the case various family members have the same kind of cancer. In short, a doctor who believes in incremental medicine promotes healthy behaviours and encourages precocious diagnoses. There are many things we still do not know, and we will never be able to predict everything. We imagine future medicine being able to detect very small parts of a tumour’s DNA analysing a drop of blood, making it possible to eliminate the tumour with non-invasive interventions. Perhaps we will all be connected to a healthcare centre thanks to a microchip under the skin, and our general practitioner will be a cyber-doctor who has access to huge databases. This future is still a long way off. Meanwhile we closely observe medical practice centred around the ‘one step at a time’ rule. It is true that at the moment it costs and gives no visibility to those who practice it; however, the cost presented by acute events—which require spectacular and lifesaving interventions—is even higher; also, the scope of these interventions is limited. An Incremental Doctor can save your life: not right away, but in time. We must discover the heroism of incremental medicine. I agree in any case with the reflection at the end of Atul Gawande’s article: We can give up an antiquated set of priorities and shift our focus from rescue medicine to lifelong incremental care. Or we can leave millions of people to suffer and die from conditions that, increasingly, can be predicted and managed. This isn’t a bloodless policy choice; it’s a medical emergency [7].

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We can only hope that future care will be an effective combination of anticipatory, reactive and incremental medicine; and that the healthcare system will make the most of models of treatment that apply chronicity and to complex scenarios.

References 1. Hart JT. The inverse care law. Lancet. 1971;297(7696):405–12. 2. Hart JT. A new kind of doctor. The general practitioner’s part in the health of the community. London: Merlin Press; 1988. 3. Turabian JL. Opportunistic prevention in family medicine: anticipatory care, case-finding and continuity of care. J Health Care Prev. 2017;1:101. 4. Wagner EH, Austin BT, Davis C, et al. Improving chronic illness care: translating evidence into action. Health Aff (Millwood). 2001;20(6):64–78. 5. Boehmer KR. Does the chronic care model meet the emerging needs of people living with multimorbidity? A systematic review and thematic synthesis. PLoS One. 2018;13(2):e0190852. 6. Leppin AL, Montori VM, Gionfriddo MR.  Minimally disruptive medicine: a pragmatically comprehensive model for delivering care to patients with multiple chronic conditions. Healthcare. 2015;3(1):50–63. 7. Gawande A. The heroism of Incremental Care, New Yorker; 2017.

Chronic Meets Chronic (When Doctors are Dangerous)

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Think of someone sleeping in the bottom of a row-boat tied to a mangrove root or the pile of a bridge; think of him as uninjured, barely disturbed. Elizabeth Bishop Little Exercise

The shoemaker’s children go barefoot. Doctors do not get treatment because they know what is coming. Psychiatrists are mad. A sad and sometimes dramatic truth lies behind these clichés. In June 2018 the British Medical Journal published an article on the case of Julien Warshafsky [1]. Julien was a 31-year-old anaesthesia registrar. He was under investigation for substance abuse at work. On 28 June 2016 he was found dead by his wife, a nurse, when she came home from work. He had been on sick leave since December of the previous year after he collapsed following a suspected overdose of fentanyl. His fentanyl abuse had come to light 3 years earlier when he’d been caught taking opioids from patients’ vials, but he had never been placed in an addiction programme. His urine was subsequently tested for opioids, but as fentanyl is a synthetic opioid it hadn’t come to light. He often expressed feelings of emptiness and inadequacy. People knew that Julien didn’t like his job; he had probably been depressed for some time and the fentanyl helped him feel better. In 2015 he went into respiratory arrest 5 min after putting a patient under anaesthetic; it happened again that same year during a coffee break. There were needle marks on his arm, but he had gone on sick leave for depression and alcohol abuse. He was resuscitated a further four times between March and May of 2016 by his father and girlfriend. On the day he died he was alone: there was no one there to help him breathe. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_12

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Julien’s was an all too predictable tragedy. The big question at the heart of the BMJ article is: could he have been treated? He had not been protected, and paid the highest price—but nor had the patients. He had gone to the General Medical Council (GMC) himself and continued to work under supervision. The programme in place was not enough. Following this episode, the GMC changed its programme for at-­ risk doctors. But Julien’s is not an isolated case. In 2007, the online edition of the German weekly Die Zeit described a similar case involving a Junior Doctor addicted to dolantin, which contains pethidine, another synthetic opioid. The doctor was overloaded with clinical work and research: only the drugs allowed him to keep up the pace. Generally, a hospital doctor barely manages to finish the routine tasks in working hours. Research has to be done in one’s spare time, which leaves no space for downtime, sport or a family. In the same year, the German medical journal Deutsches Ärzteblatt published an article by a surgeon who claimed that only those who worked a minimum of 60 h a week could hope to make it as a surgeon. The medical class itself feeds the image of doctors as people always ready to sacrifice themselves, giving up their own life for work as if it were a moral duty. These expectations are taken to their extreme in the television series, The Resident. ‘Resident’ is the term used for the young registrar doctors in the United States who are exposed to fast-paced, high-stress working conditions; only the toughest make it through. Another series, Grey’s Anatomy, had already shown this very convincingly: but by emphasising the struggles, television somehow justifies the sacrifice, because whoever overcomes the challenges without being crushed becomes a good doctor. This prompts the question: could not we achieve our aims without working people to the bone, and sacrificing a proportion of them? Lots of doctors struggle with the hospital environment. The everyday madness of these institutions was described by an Austrian doctor who retired from working in intensive care at the age of 50, on the verge of burnout. The title of his book puts things eloquently: Dauerfeuer or ‘a constant fire’ [2]. That is how he felt: as if constantly pursued by fire; and when he went home he would often argue with his wife, drank too much and had begun to withdraw from his friends. He later wrote a book on preventing burnout. In the meantime, fentanyl addiction has become so common as to justify its own blog on the site www.addictions.com/blog/doctors-­addicted-­to-­drugsfentanyl-­ abuse-­in-­the-­hospital/ [3] which aims to help doctors who are struggling (Fig. 12.1). This data reminds us that doctors are more prone to substance abuse than the rest of the population, and the rate of abuse among anaesthetists is double that of other physicians. The problem of fentanyl and other opiate addiction, such as oxycodone, is widespread in the United States. It began in the 1990s and caused 20,000 deaths in 2016. The Americans were also the first to experiment with fentanyl recreationally. Doctors have easier access to drugs: they can easily take them at work, they operate in a highly stressful environment with a high incidence of burnout, often working in critical situations on the edge of life and death. No routine work is done on the team: physicians are never asked how they feel when a resuscitation goes wrong, perhaps because it will be compensated by the euphoria when it goes well. Chronic dependence is a vitally important topic, given that it does not only concern doctors. Above all, it has repercussions for the relationship with patients and

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Fig. 12.1  United States National Observatory on the use of drugs, health and mortality 2016: a growing epidemic. The figure shows that in 2016 19,413 people died from an overdose of synthetic opioids such as fentanyl. [Credit: U.S. Department of Health and Human Services; Sources: 12016 National Survey on Drug Use and Health, 2 Mortality in the United States, 2016 NCHS Data Brief No. 293, December 2017, 3 CEA Report: The underestimated cost of the opioid crisis, 2017]

their safety, particularly in critical areas such as intensive care and emergency medicine. Who would go into an operating room knowing that the doctor putting them to sleep might pass out beside them, having potentially taken the drugs intended for the unfortunate patient, as happened in the case described in the BMJ article?

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But we should ask ourselves a further question: what causes health workers to get sick? Is it just the ‘toxic’ working conditions of the environment—lack of regular meals, sleep and rest—and the intense rivalry between colleagues? Or might there be other indicators that reveal whether a person—who may already have suffered from depression or other issues—can really sustain this work rate over the long term? Similarly is working this way, punishing ourselves and having no personal life, really necessary? Could the working conditions not be improved, and an ‘occupational health physician’ appointed—as per the denomination given to the doctor who carries out check-ups to ensure a person’s health and safety in the workplace, and contributes to the drawing up of risk assessments? And could this check­up not go further than screening for cardiovascular or infectious disease? • Alvaro was a 50-year-old doctor working at a large hospital in Rome. He died of a heart attack on Rome’s ring road, after a night shift at the hospital. His father had suffered the same fate at the same age. He was known among his colleagues for being remarkably resistant to any form of check-up; always reluctant to undergo the annual medical from the hospital’s occupational physician, he would only go after several reminders. As the nurses reported the following morning, he had not been feeling well on the last night of his life. He had had a strange pain in his stomach, and in retrospect we know this was a symptom of his having a heart attack. Why, everyone wondered after they had received the call from the police, had he not said anything to his colleagues? A simple ECG would have saved his life. • Michele was an excellent nurse of around 60, loved and admired by colleagues and patients: the kind that immediately made the patient feel at ease: ‘How lucky that he’s on duty!’. He suffered from slightly high blood pressure but refused to take any medication, saying that it was due to stress at home; his cholesterol was a little high, as he did not eat healthily and was always in a rush. He had had chest pain for several weeks which, as he said himself, was not acid reflux. We all know that chest pain has to be looked into because it can conceal acute coronary syndrome or a heart attack. Once he had even had his troponin levels tested (during working hours, obviously). Troponin is the indicator of myocardial ischemia, and his was a bit irregular; he had then had another couple of check-ups but put off looking into it any further. He never missed a day’s work on the ward. Early one morning he began to feel unwell while on a night shift, at around 5 am; when he got to the emergency room he went into ventricular fibrillation. Everything was done to resuscitate him, with all the passion and commitment one gives for a colleague. Nothing could be done: he died in the emergency room of the hospital he worked at, to which he had literally given his life. He left behind a wife and three children. His entire ward was grief-stricken, both incredulous and a little angry. So many of them had tried to convince him to see the cardiologist, to not put it off; he had

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even argued with people about it—but he did not want to, said it was not necessary, he would do it when he had time. His colleagues let it go: he was a grown man was not he? Many of them asked themselves whether they should have forced him to get treatment. Why did they give up? They could have avoided this premature death in a hospital with an extremely good coronary unit, where he would have received the right care. Of course, no one can be cured if they do not embark on the diagnostic process, and health workers often avoid the standard approach: they stray from the beaten path, do blood tests independently, consult a colleague friend or do everything themselves. This is how the denial of minor chronic conditions such as hypertension and hyperlipidemia can end in tragedy. The examples of Alvaro and Michele are not about addiction but about a death which seemed very sudden, and yet the events leading to the death provided clear signs. How can it be that those who work in the system do not get treatment, and do not seek help? Or if they do, they do so outside of the normal pathways. Is it because they want to avoid the stigma of passing over to the side? Or because of some sense of invincibility along the lines of: ‘it will never happen to me’. Or is it repression caused by deep anxiety? There are those who believe another theory: might those who choose to work in the medical profession actually suffer from a greater fear of falling ill than others? The British Medical Journal tackled the question of ‘sick doctors’ as early as 1994 with the case of a pathologist suffering from bipolar disorder [4]. The manic phase of his disease led to him giving only very superficial and cursory attention to the slides for which he needed to write a report. It is not hard to see how difficult it is to evaluate this situation. The man worked alone in a laboratory: who was there to assess him? And if he was off work sick, who could judge whether he could go back? The patients’ safety must be protected; colleagues are obliged to report another physician’s problem; there is a manager’s duty of care towards their staff. And then there are different kinds of sick: rheumatoid arthritis may be recognised as a serious condition and not subject to stigma, but a psychiatric issue or alcohol or drug addiction can more easily be kept quiet. As early as 1986 [5] there was talk of an increase in mortality among doctors, with a larger number of suicides and a higher incidence of self-harm, poisoning and cirrhosis of the liver. At that point the synthetic opioid problem did not exist; it would come later. A recent study by the American Psychiatric Association (APA) [6] suggests that in the United States the suicide rate for physicians is double that (28–40/100,000) of the normal population (12.3/100,000). This is the highest of any profession, and among all the specialists first place regrettably goes to psychiatrists. It is surprising that suicide among doctors should be more common than in the military, a profession deemed particularly stressful. Aside from the easy access to drugs, the cause often seems to be a mental health problem such as depression, which goes unrecognised or untreated because of the stigma attached to it. The reality of the European

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situation, which also applies to Italy, is different from that of the United States. Generally, the suicide rate is much lower in Italy, at 4.3/100,000—but a similar malaise is evident in hospital medicine. In Germany, the suicide risk is also double that of the normal working population. In essence: doctors die younger, commit suicide more and are more inclined to alcohol and substance abuse. They suffer more from stress, have greater performance anxiety, are more afraid of legal battles, take less preventive care of themselves, undergo less treatment and do not seek help because they are afraid of the stigma or of losing their job. Does this description match that of someone able to put the patient’s best interests first? Should not we be thinking of doctors and nurses as workers just like everyone else?

References 1. Warshafsky J.  How this doctor died and what it tells us about the system that failed him. BMJ. 2018;361:k2564. 2. Ratheiser K.  Dauerfeuer: das verborgene Drama im Krankenhaus. Berlin: Suhrkamp Verlag; 2006. 3. https://www.addictions.com/blog/doctors-­addicted-­todrugs-­fentanyl-­abuse-­in-­the-­hospital/. 4. Donaldson LJ. Sick doctors. BMJ. 1994;309(6954):557–8. 5. Office of Population Censuses and Surveys. Occupational mortality1979–1980, 1982-83. London: HSMO; 1986. 6. American Psychiatric Association (APA). Annual Meeting. Abstract 1–227, presented 5 May 2018.

Chronic Seeks Chronic: The Opportunities of Web 2.0

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Female friends will often ask each other: ‘Have you been to the gynaecologist? I know, it’s a pain, but it has to be done. Who did you go to?’ Then the list begins man or woman, young or old, nice or not; and perhaps as a last point, how competent they were: the ones who sorted out a problem, the ones who did not, the ones in high demand, where they are based... This is the most common form of everyday solidarity in the world of ‘seeking medical help’. Self-help groups originally started out as meetings between small numbers of people who had the same problem and lived in the same area: these groups would bring people together around a common interest, or because they were at a disadvantage compared to others—as was the case with the women’s liberation movement—or because they were affected by the same disease or the same issue, such as Alcoholics Anonymous. The next step was to look for information online. Today the internet has become our major source of information, in an era-defining shift comparable only to Gutenberg’s invention of the printing press. In 2004 the expression Web 2.0 came into use, distinguishing it from Web 1.0. The difference lies in the fact that users can continuously change the content, as in the case of social media platforms. One article investigating the use of social media in orthopaedic patients [1] comes to the conclusion that information relayed through social media offers a major opportunity to avoid people becoming mere ‘consumers’ as far as their health is concerned: they can be actively involved in their treatment. However, the problem of the sources referred to and their reliability remains—not to mention the potential bias which may arise from the economic interests of doctors, (private) healthcare institutions and, obviously, the pharmaceutical industry. Social media also encourages virtual personal relationships. I remember one patient who suffered from dwarfism as a result of a severely deformed back; because of her respiratory problems she was on oxygen and ventilation therapy at night. At one follow-up appointment, she seemed brighter than usual; she said that through Facebook she had become a source of advice for people who suffered from anxiety. She was so pleased to have this window onto the world: so often stuck at home

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because of her physical condition—her family were the only people she saw—but now, given her extensive experience of hospital and anxiety management she was able to be of use to other people and felt she had a purpose in life. The beneficial impact that contact with other patients via the internet can have is well documented in Gioia Di Biagio’s autobiographical account of the opportunities provided by Web 2.0, entitled: Come oro nelle crepe. Come ho imparato a rendere preziose le mie cicatrici (Like gold in the cracks: how I learned to make my scars precious) [2]. Gioia has Ehlers Danlos syndrome (Fig.  13.1), a rare condition affecting the body’s connective tissue that makes the skin extremely fragile, causes it to stretch and prevents wounds from healing properly, as well as making the ligaments hyperelastic and prone to frequent dislocations. Having been surrounded by doctors at the Meyer Paediatric hospital in Florence since the age of seven, she had long felt alone and isolated—until the day she published her first post on a website where people with the same disease could meet and talk: I’m 25 years old and a week ago I asked myself for the first time: ‘I wonder if there is any information on my syndrome online’. It warmed my heart. My friends have always affectionately called me, ‘the little alien’, and now I’ve finally found other aliens—other wonderful, individual life forms just like me! Hello people like me! Estimates suggest that there are currently somewhere between 70,000 and 100,000 self-help groups in Germany: this is no small number and reflects patients need for more information, their distrust of a single opinion and their emancipation from a somewhat paternalistic medical model, as well as the need to talk to those who experience the same suffering, stigma and social injustice. These groups have an influence on healthcare policy and the medical world, and help finance research. Once people would go to group meetings; nowadays the internet and social media have made communication between members much easier. The vast majority of these groups can be found on Facebook.

Fig. 13.1  Gioia di Biagio is affected by Ehlers Danlos Syndrome, characterised among other symptoms by stretchy fragile skin (© Ilaria di Biagio)

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Often these groups are not set up by patients but by experts in the field. To name only a few examples: the AIC (Associazione Italiana Cardiopatici; the Italian Heart Disease Association), which aims to educate people on the risks of cardiovascular problems and cites the improvement of communication between patients and doctors as one of its objectives. Similarly, FederAsma—now Federasma and AllergieOnlus— was founded by two specialists with the aim of promoting the rights of patients with respiratory and allergy diseases. Patients and professionals often join forces, as in the case of AISLA, the Italian Association for Amyotrophic Lateral Sclerosis, which has provided information and practical help to many people affected by this rare condition. These are just a few examples of the many help and self-help organisations that exist in Italy—and indeed in many other countries—which cover a wide range of diseases. When you type ‘self-help’ into Google, more than 92 million results come up; type in ‘self-help groups’ and it is over 11 million. Typing in ‘self-help’ and the name of the disease (for example ‘anxiety’) in Rome, the results are 595,000. A central concept in the world of patient associations and self-help groups is empowerment, in the sense of literally giving power to someone. In Julian Rappaport’s universally accepted definition, this is defined as ‘a process by which people, organizations and communities gain control over their affairs’ [3]. Patient-­Centered E-Health (PCEH) is the model that has made the Internet’s fundamental principle its own: the focus is on the patient, their active participation and empowerment. An Italian initiative called hmaps (www.h-­maps.com) is also interesting in this respect. It is a pilot project born out of a radiology student’s experience when she had to tackle the diagnosis of Hodgkin’s Lymphoma as part of her internship. Starting with a sketch on a piece of paper, she began to map out the entire treatment process. This is notoriously complex with oncological diseases, particularly those of the haematological variety. Her project is currently active only at the San Martino Research Hospital in Genoa (IRCCS AOU San Martino IST) for Hodgkin’s Lymphoma (first-line treatment), non-Hodgkin’s Lymphoma and myeloproliferative diseases. Access to the website is personal and password-protected, and through it patients can communicate both with medical personnel and other people undergoing the same course of treatment. It is an innovative approach and could be a good way of reducing the anxiety that precedes treatment. Not long ago, following the analysis of a questionnaire given to 601 health leaders on their role and how social networks can improve the health of patients, the New England Journal of Medicine Catalyst published a statement by a group of experts in clinical medicine [4]. The majority were convinced that social media could have a significant influence, first of all on the management of chronic diseases, as well as encouraging healthy lifestyle changes such as weight loss and quitting smoking. We are looking at an epochal change that is making the world even more complex, including in the healthcare sector. Just 50 years ago information was still gleaned from a medical encyclopaedia, if there was one in the house. Nowadays anyone can access a wide range of medical information from anywhere; they can read scientific articles which you once had to go and order at the library, where they would arrive weeks later; they can chat with people all over the world and contact the most advanced research centres. I wonder how the traditional means of seeking

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medical advice will stand up to this, when emotional comfort can also be sought online. Aside from our need for technical knowledge, and a key figure whose hand will guide the course of treatment, we might feel nostalgic for that almost magical, unfathomable connection which can emerge during a doctor’s appointment, which allows you to feel as though you are being taken care of and listened to. Another conspicuously novel element has also accompanied the growing voice of those people who enter life marked by disease: the need to tell their story and their search for a cure. This type of account has become a literary genre in its own right, in which painful stories are dubbed ‘misery reports’. Typing ‘living with cancer’ into Google gives us an idea of the consistency of this phenomenon: about four million results come up. Also ‘Living with chronic diseases’ yields 1.2 million results. These figures are enormous; it feels as though there is something for every situation: from the relapse of a tumour to a ‘teens cancer guide’ (Fig. 13.2). This narrative output reveals a desire or a need to tell one’s own story: whether on paper, in a blog or on YouTube. A ‘selfie with illness’, basically. This lack of privacy or discretion might shock us: everywhere people are talking about their experience, whether in poetic form—we may think of the song My cancer romance—or in more dramatic terms; through video, as in My cancer relapse story. Nor is there a shortage of stories full of humour: Cancer is a laughing matter. And there are just as many stories about chronic disease and its impact on daily life. Instructions on how to live with them also abound: there are many ways to describe, and manage, chronic disease. We thus find ourselves in a relatively new field of narrative medicine. It cannot be ascribed to the ‘selfie with illness’, nor is it yet another medical specialism. It cannot be summed up as merely the desire to ‘make the patient speak’. In fact, it has to do with the underlying attitude of doctors, as they attempt to establish a bridge between evidence-based medicine and the medical humanities [5]. While medical science tells us what we should do to fight disease, these narrative accounts allow us to get inside the human experience of treatment. But how might we define narrative medicine, now that it is increasingly populated by new specialists of all types and backgrounds? The 2015 consensus document born of a meeting of experts convened in 2014 by Italy’s Health Institute (Istituto Superiore di Sanità) provides a starting point [6]. The aim of the conference was precisely to provide a definition of narrative medicine, shedding light on the numerous misunderstandings that gravitate around this approach: The term ‘narrative medicine’ implies a clinical care methodology based on a specific type of communication. The narrative act is the fundamental tool to acquiring, understanding and integrating the different perspectives of those involved in the disease and the treatment process. The aim is the joint creation of a personalised course of treatment (the treatment narrative). Narrative medicine combines with evidence-based medicine and, taking into account the plurality of these perspectives, makes clinical care decisions more holistic, personalised, effective and appropriate. A narrative account by the patient and those who provide care is an essential element in contemporary medicine, centred on the active participation of those involved in the choices. Through their stories, people are able to play a central role in the treatment process.

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Fig. 13.2  A guide for teenagers produced by the USA National Cancer Institute, useful in the event that one of their parents falls ill. (Credit: U.S. Department of Health and Human Services; National Institutes of Health)

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There are lots of examples of how different perspectives might ideally be combined. Let us take the common cold: as common as can be for a doctor, but how often when we get one do we say to ourselves, ‘Well, it’s no surprise I got sick now’. Some people say it is because they cannot cope with their workload or a relationship; or they feel they have had a really bad run of luck and see getting sick as its inevitable consequence. If the patient is simply sent home with anti-inflammatories and some cough syrup they leave unhappy, but if they get to tell the story of why they have fallen ill they feel listened to, and go home comforted. The stories and meanings behind an organ transplant, such as the lungs, can be even more dramatic. From a clinical perspective, this takes place at the end of a longstanding chronic condition, when science says that respiratory failure is so advanced that without a transplant the patient is likely to die within a relatively short period of time. That is the technical view: but what does it mean for the patient to live with another person’s heart or lung? How will they see themselves with someone else’s organ? Is their identity under threat? How will they think of the person who died allowing them to live? And will they be able to stand the continuous check-ups immunosuppressive therapy demands? Will they be able to accept that they will never be free of this process? Or is their desire for independence so irrepressible that they will not be able to stand strict treatment for the rest of their life? As well as the appropriate psychological consultation, listening to personal stories can be a precious resource that gives voice to the patient’s individual values, their emotional and family history. Medicine ‘dressed up with narrative’ [7] how explained by Sandro Spinsanti may help us understand whether to accept and pay such a high price—in terms of the potential side effects and restrictions on our personal freedoms caused by continuous check-ups—or face up to the decision to reject further treatment in favour of a shorter life. Listening to these narratives and valuing them in clinical decision-making also helps physicians endow their work with greater richness and meaning. It can allow them to step outside of their usual routine. Even if they are not empathetic by nature they may want to experience their work differently, through the discovery of a patient’s inner world. Giving space to these narratives may also help avoid the onset of cynicism, boredom and burnout. Telling their story helps people live with disease. It can take the form of books, blogs, films and photos. While in shorter, sharper and more rapidly resolved experiences of illness the need for narrative may not arise (aside from in the action-packed form of a narrow escape), it is often vital in chronic conditions. A stronger command of narrative communication skills would therefore be desirable with chronic illness. It can be an effective coping mechanism, helping people to share their experiences and live with chronic conditions.

References 1. De Martino I, D’Apolito R, McLawhorn AS, et al. Social media for patients: benefits and drawbacks. Curr Rev Musculoskelet Med. 2017;10:141.

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2. Biagio G.  Come oro nelle crepe. Come ho imparato a rendere preziose le mie cicatrici. Mondadori: Milan; 2018. 3. Rappaport J.  In praise of paradox. A social policy of empowerment over prevention. Am J Community Psychol. 1981;1:1–22. 4. Volpp KG, Mohta NS. Patient engagement survey. Social networks to improve patient health. University of Pennsylvania, NEJM Catalyst, Insight Reports November 2017. 5. Bert G.  Medicina narrativa. Storie e parole nella relazione di cura. Rome: Il Pensiero Scientifico; 2007. 6. Conferenza di Consenso. Linee di indirizzo per l’utilizzo della Medicina Narrativa in ambito clinico-assistenziale per le malattie rare e cronico-degenerative. I Quaderni di Medicina de Il Sole 24 Ore Sanita; 2015. http://iss.it.cnmr/index.php?lang=1&tipo=82&view=0. 7. Spinsanti S. La medicina vestita di narrazione. Rome: Il Pensiero Scientifico; 2016.

The Decline of Chronic Illness Towards the End of Life

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… so we live, and are always taking leave (… so leben wir und nehmen immer Abschied) Rainer Maria Rilke Duino Elegies

With the end of the paternalistic medicine era the time when another person—i.e. a doctor—was allowed to make decisions for us is over. These are decisions on which our health and life itself depend, as well as the quality of that life, obviously. Self-­ determination is a central tenet of medical ethics today, even though it still happens that families place themselves in between patients and the bad news, with the aim of protecting them—and the doctor plays along, much as this goes against the profession’s code of practice. Broadly speaking, we have never had as much choice in healthcare as we do today: whether prevention or treatment we have the option to accept, adjust, seek compromise or refuse outright. This applies to the entire gamut of treatments, but is especially true towards the end of life. Particularly in intensive care, big questions start to emerge: what is most appropriate? What is futile? Very often the patient is unable to play an active role in these decisions and physicians frequently have to ask themselves how to proceed with invasive treatment in a largely desperate situation. This is not always a straightforward process. A single life involves many changes, even in those who have expressed an underlying attitude towards the end of their life, and their preferences for it. Yet when a disease appears, often unexpectedly, one’s feelings and view of life tend to change. We may realise that living with a chronic condition, or with health problems, is possible. This is one of the reasons why so-called living wills can be problematic. While they are young and in good health lots of people claim that they have absolutely no desire to end up in intensive care, in a wheelchair or on dialysis. And yet when the situation becomes a reality © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_14

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and the choice is between a life of compromise and no life at all, many change their mind. Changing a will—even in the form of a living will—is not always easy, particularly when a lawyer is involved. Advance Treatment Arrangements (or ATAs) are much more manageable, as is the advance planning of treatment generally, in which the patient agrees on the treatment with their physicians. However, there is one chronic condition which does not allow you to choose beyond a certain point: dementia. In 2015 there were 46.8 million people in the world living with dementia, a figure which will jump to close to 75 million by 2030 and 131 million by 2050 [1]. Dementia is generally connected to senility, i.e. it is age-related. Our brain is an organ like any other, it ages, and unfortunately this can lead to a lack of self-sufficiency. There are those who try to decide in advance, leaving their wishes to their loved ones in the event that they are no longer able to look after themselves. But most people do not want to think about it: whatever will be, will be! In doing so they allow others to decide for them in certain situations. The major practical and theoretical question is: once we succumb to dementia, are we the same people we were before, and are the choices of that previous person therefore valid—or are we someone else? If different, that person may have fewer inhibitions than before. This hypothesis comes from the so-called meatball story, which took place in Sweden; first reported by the Huffington Post, it was subsequently picked up by numerous publications. Oscar, a former vegan activist, suffered from Alzheimer’s Disease and noticed people eating meatballs in the canteen of the care home where he was being looked after. He tried the meatballs, liked them, and from that moment on wanted them too. His wife was shocked, insisting that he would never, ever have eaten meatballs! This poses a dilemma: who is Oscar? Is he the man of today, who wants the meatballs—or the one his wife knew, who had vowed never to eat them again? Oscar may have no power to make major decisions in life, and cannot sign official documents—but should not he at least have the right to eat meatballs? Who knows, he may only have asked for them because he does not want a different meal to other people; or perhaps they reminded him of his mother’s house when veganism was still unknown? Yet this is no trivial matter—in fact the UK Alzheimer’s Society has a whole chapter dedicated to the subject on its website [2]. Food is a very personal and important thing in family life. A person suffering from dementia may refuse food or spit it out; they may be trying to communicate that it is too hot, or they may simply no longer know what to do with it. They may become agitated and angry because of food and challenge those who live with them: they can feel frustrated by the difficulties they have eating, or if there is a time pressure; or they might not like where they are or who they are with, or what they have to eat. It is plausible that they might forget their decision to no longer eat meat, and instead remember a time in their life when they ate it; or they may want to eat meat because everyone is eating it. Or then again, perhaps the person has simply changed. Whose will is to be respected: that of the person that was, or that of the person in the here and now? Is it right to bind someone to an earlier choice? The scenario is different in a rare degenerative chronic disease like amyotrophic lateral sclerosis (ALS). In this instance it can also happen that the sufferer changes

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their mind during the course of the illness, which forces the patient to make a series of difficult decisions. This disease causes you to lose the ability to speak, to swallow, to walk and move, but normally does not affect your mind—apart from a rare form which can include dementia. There is no cure for ALS, only an inexorable decline. As medicine has no treatment for the cause, it outlines what can be done to keep living: using a wheelchair to move around, a computer to communicate, a PEG to ingest food (a tube in the stomach through which food passes), have a tracheotomy and making use of tailored machine ventilation. This is the technical part that is explained to the patient. The person to whom this tragedy befalls is often speechless, stunned at the prospect of a cruel and unimaginable future that seems to have struck them like a meteorite. They sometimes attempt to leave the doctor’s surgery because they do not want to talk about it anymore; they say they do not need anything and do not want to undergo any treatment. The significance of all of these support mechanisms for the patient goes well beyond their technical implications: the idea of being in a wheelchair or seeing themselves as handicapped is unbearable when they may still be relatively young. They would rather move around with a stick and often fall as a result. And what about speech, which means so much in life? Eventually one’s ability to communicate is reduced to the metallic voice of a computer. As for food, the patient has to face the loss of smells and flavours as the calories pass straight into the stomach through a tube. No more wonderful evenings around a dinner table with family and friends. And finally our breathing—that entirely autonomous activity that connects us to life—is replaced by a machine; initially it may involve only a few hours with a mask, and then by way of a tracheotomy. Each of these procedures requires the patient’s involvement and consent, which is painful for them and their loved ones. Years ago the severity of the disease was not talked about in Italy. Generally people would die of suffocation, either because of respiratory failure or by inhaling food. Nowadays people with ALS are the conscious actors of their lives and they need clarity and courage to face all of this. There are those who say no to any form of invasive treatment. I remember a very successful aeronautical engineer who fell ill at the age of 78. Having listened very carefully to his prognosis and his options, he immediately said that he might accept non-invasive therapies such as machine ventilation with a mask during night-time hours, and a coughing machine, but he categorically refused the PEG and tracheotomy. He was so lucid and conscious of what he was doing that he immediately gave his consent to being included in a palliative care programme. As such he was able to access immediate pain relief when his respiratory failure worsened. He died peacefully. His path was facilitated by the availability of information and the willingness to face up to things and make conscious decisions. There are also those who do not decide and then end up in ER in tragic circumstances. At that point it is the duty of anaesthetist who has to make the decision, without knowing anything about the person. This is what happened to a young man of 38, accompanied by his wife. The woman claimed that her husband, unconscious at the time, would never have wanted a tracheotomy. The anaesthetist was not convinced: she intubated the man, woke him up and asked him whether he would like

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to continue living with a tracheotomy. The sick man said yes: he had two small children and wanted to stay alive for them. He later separated from his wife and lived with his new partner, his first love, for many years. By the end he was confined to his bed and was only able to move his eyes. And yet he had made a conscious choice. This story also reveals how delicate the doctor’s position is, when they are called on to evaluate claims being made on behalf of the patient that is directly affected by them. But one can also regret saying ‘yes’. A 60-year old man, once a talented football player, fell ill with a very aggressive form of ALS. Before long he required 24-h ventilation. The time came for a decision on the tracheotomy. He wanted to say no to a tracheostomy, but struggled with the decision for religious reasons: he thought God would not forgive him were he to reject the life medicine could give him through ventilation and a tracheotomy. The hospital’s catholic chaplain was asked to provide advice, and locked himself in a room with the patient. No written transcription of the conversation was filed, but medical staff were told that the patient was given every reassurance: he had the right to choose; God would not force him. However, the patient was not ready to say goodbye to life just yet, and agreed to the tracheotomy that would prolong it. But following surgery he became severely depressed, irritable; he wanted to give up the tracheotomy immediately, then changed his mind. These second thoughts continued for months. One can also say ‘yes-and-no’, which leads to other decision-making scenarios. As we have seen, the impact of the initial diagnosis of a degenerative disease can be devastating. • An elderly woman named Rosa went to a lung clinic for an appointment on the respiratory failure connected to her ALS. When the doctor started talking about the consequences of her illness she cut her off, saying: ‘Doctor, please don’t tell me how it ends’. She said she was willing to undergo ventilation therapy. One day she was hospitalised because her respiratory problems had worsened. She could not stand the non-invasive ventilation and following a rather fraught consultation she refused a tracheotomy. Her decision was not a rejection of life, she explained: she attributed it to a consideration of her family situation. She described her two daughters, both of whom had small children and were very committed to them: looking after their mother would take time and attention away from the children. As for herself she said that she was over 70, there had been meaning to her life and she could accept its end. The two daughters—initially distressed and incredulous—accepted their mother’s choice, and recognised its maturity and moral courage. Nowadays lots of diseases involve delicate decisions: which treatment to undertake and which to avoid; when, in the case of cancerous diseases, to stop and start on a phase without treatment; when to rely on pain relief and palliative care; when to go into a hospice. These kinds of decisions are only possible when made

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consciously. Unfortunately, it still happens that terminally ill cancer patients end up in the emergency room, which is no place for a patient that cannot be ‘saved’. Sometimes this is a choice born out of desperation, because the family do not know what to do, or who to turn to. Behind this may lie a void in general medicine and the narrowness of oncological practice, notably when it is limited to anticancer treatment, when it does not combine a clinical approach with the palliative care model. But there are also cases of patients not knowing, or not wanting to, and the family not helping them understand the reality of the situation. There are also less dramatic choices, in simpler situations: for example being conscious and lucid in advanced old age. One example which attracted a lot of attention was that of astrophysicist Margherita Hack. At the age of 90, she decided not to go through with the heart operation she was offered; she died at home at the age of 91. In December 2012, she was interviewed by the Italian newspaper Il Corriere della Sera, and said: ‘I want to live the time I have left at home, with my husband Aldo, and my pets. I’m not afraid of death. I’ve decided not to have a double heart operation which I felt was too risky—but I remain committed to the things I’ve always fought for, both as an astrophysicist and as a citizen, and that will continue as far as possible’. What is the doctor’s role in the choices that present themselves in the twilight of our life? Above all their duty is to give the patient a full picture of possible treatments, along with their respective advantages and disadvantages. More often than not this cannot be done in one sitting. Sometimes, as in the hypothetical case we mentioned where a patient with ALS is rushed to the emergency room, decisions have to be made in a matter of minutes, which is far from ideal. It often takes time to process information calmly, whether alone or with one’s family. The significance of single choices comes in small waves: taking everything in at once is impossible. Without complete, exhaustive information being given again and again there is no ‘next step’. The physician has to try to understand the individual’s general feeling, fitting it into the arc of their life and personal history. A pacemaker has a different meaning for a 90-year old like Margarita Hack than it does for a 20-year old who has just been diagnosed with a heart problem. A single person may find it harder to choose a path which involves help from lots of caregivers. Someone over the age of 80 can make up their mind about a tracheotomy and must be told that they can undertake it; but they might also consider whether their life has run its course, and decide against a course of treatment that would be very demanding both for themselves and those called upon to support them. An elderly patient often has another elderly person by their side, and this can have a significant impact on the choices they make. Ideally, when communicating with a patient the specialist—whose armoury includes treatments that have a profound effect on a person’s life and their quality of life—should discuss matters with the individual, their families and potentially their General Practitioner, so as to reach a joint decision on treatment. Bearing everything in mind and taking individual requests into account (‘Doctor, you know me, what would you do in my shoes?’),

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one can also expect to have to give people a little ‘nudge’ [3], which is often vital to avoid people falling into irresolvable dilemmas. Making a choice in the world of chronic illness assumes one has all the information, which must lead to conscious choices. If this is not the case, things just happen. We find ourselves powerless in situations we would never have wanted, and we are denied things we would otherwise gladly have accepted. It is the difference between letting things happen and, as far as possible, giving shape to one’s life—including its end.

References 1. World Alzheimer Report 2015. The global impact of dementia. An analysis of prevalence, incidence, cost and trends. 2. https://www.alzheimers.org.uk/get-­support/daily-­living/eating-­behaviour-­challenges. 3. Sunstein C, Nudge TR. Improving decisions about health, wealth, and happiness. Cambridge: Harvard University Press; 2008.

If Chronic Illness Works with Palliative Care

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We’ll do everything we can to help you die, but we’ll also help you live until you die Cecily Saunders

We cannot talk about end-of-life choices without considering palliative care—or rather, without adopting a fundamentally palliative approach. Before I start, I should say that up until recently clinical thinking was pretty formulaic: a serious issue would mean you ended up in intensive care or a hospital ward, and then go to rehabilitation; when nothing more could be done the case was passed on to palliative care, or perhaps a hospice as a last port of call. This formulaic approach is now being reconsidered. We now know that rehabilitation has to start in intensive care or there can be painful consequences: ankylosis, and weeks of shortened tendons after months spent lying in a bed, possibly under sedation. The side effects of intensive care and being confined to bed for long periods can require not only rehabilitation but sometimes even surgery. We now know that such problems can be avoided by involving physiotherapists in good time. The same applies when thinking about palliative care. Its function overlaps with the ancient principles of Hippocratic medicine: ‘First, do no harm; second, relieve pain’. Someone with a chronic illness who is faced with a difficult decision has to know that doctors will always do everything they can to alleviate their suffering, irrespective of the decision they take. This underlying commitment must be absolutely clear. If the aim is to keep pain under control the patient must know that their doctor is prepared to call someone with greater palliative expertise, with the aim of providing 24-h care, including at home. A pat on the back saying everything will be fine is not enough. Palliative thinking should be a part of the decision-making process when considering whether to undergo a tracheotomy, for example. The patient that has to make decisions of this kind must be informed of what can be done in the event they do not © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_15

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accept invasive treatment. This applies to so many situations, but two obvious examples are: whether to undergo risky surgery at an elderly age in the event of heart failure, or whether to go through with an organ transplant. Particularly in the latter, it is worth knowing that many patients may still die despite being on the transplant list, as there is always a shortage of organs. Knowing that when one leaves the hospital and goes home there will be another group of nurses and doctors who are trained to provide support and work with specialists is hugely comforting for the patient and their family. Let us think back to the elderly Rosa: after months of yes-and-no, she decided on a firm ‘no’—she felt that she had lived her life, and did not want the burden of her survival to fall on her daughters and grandchildren. Her decision was helped by the knowledge that she would be entirely supported in this choice. Doctors explained to her how the non-invasive ventilation would feel, if she could bear it; if she could not, pain relief could be adopted, using morphine to counter the anxiety and dyspnoea. Her weakening muscles would lead to respiratory failure and thus cause her to experience dyspnoea, but the morphine would relieve this feeling. An increase in carbon dioxide would lead first to drowsiness and then a coma, allowing her to pass away in her sleep. And that is what happened: because she was in the hands of respiratory specialists in intensive care that used palliative tools as an intrinsic part of its work. If the aircraft construction engineer we mentioned previously before did not want to have a tracheotomy, he had to know what would happen in the event of breathlessness and unmanageable secretions. People who suffer from this degenerative neuromuscular disease are terrified of dying by slow suffocation. The idea of working on two fronts at the same time—both intensive and palliative care—is vital, and the combination of the two creates what is known as simultaneous care. In this particular case, the engineer had no desire for a tracheotomy and a long life on a ventilator—but he was happy to have non-invasive ventilation therapy with a mask that provided hours of relief, which he also had the option of removing whenever he wanted so that he could talk. He also happily agreed to the coughing machine, which helped him remove the accumulation of dense and viscous secretions. The palliative care team came on board while he used this equipment, whereas they would previously have limited themselves to relieving the pain and dyspnoea with morphine. Palliative medicine can therefore support the management of terminally ill patients alongside specialist medicine, without aiming to save life at all costs. There is also a ‘high tech’ form of palliation, which does not go against the spirit of the palliative approach. Simultaneous care is a concept that comes from oncology, the area in which it was first understood that a combination of oncological and palliative treatment had to happen early. A study published in the 2010 in New England Journal of Medicine [1]) found that this approach improved both the patient’s quality of life and mood; it also showed that a group that received oncological and palliative care early on lived longer, and required less intensive types of treatment at the end of life. In medicine, we always give the most weight to what is proven to be effective— what is based on evidence, in other words—and it is absolutely ‘evident’ that those who are given full support, from both a pharmacological and psychological point of

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view, who knows what they are facing and who they can rely on, enjoy better quality of life. The anxiety of not knowing how the end will come is reduced by the knowledge that everything will be done to minimise their suffering. It has taken time for palliative care to make headway in diseases outside of oncology: it was first used in AIDS, then in amyotrophic lateral sclerosis. This fact often has less to do with a particular underlying philosophy than a series of practical problems, such as the complexity of supporting patients at home. With the improvements to treatment in all organ-related diseases chronic conditions have become more widespread, and the day these conditions reach their final stages they require palliative care. This is the case in pneumology, cardiology, nephrology, neurology and in many other specialisms. An ER department cannot be a safe haven for patients that have become too difficult to care for at home; nor should hospices become the place where chronic patients end up because they cannot be managed elsewhere. The vast terrain of chronic disease is set to become palliative care’s major field of expansion. • Mauro was 82-years old. He had been on oxygen therapy for 15 years for chronic obstructive bronchitis and hospitalised more and more frequently as his condition deteriorated. Having had tuberculosis at a young age he also suffered from thoracic fibrosis and heart disease. The last time he had been in the ICU he had improved very little. The medical team then spoke to him and his family, clarifying that further hospitalisation may not be beneficial, but that they could begin palliative treatment. He was discharged. While at home he experienced exertional dyspnoea, which led him to cry out: ‘Help me, I’m suffocating’, which proved extremely traumatic for him and his family. The palliative team intervened and began to administer small doses of morphine. Mauro felt better, had no further screaming episodes; he was alert, he could move around and communicate with his family. The palliative team went to the house every day, and the morphine and guarantee of ongoing support reassured him. He then made the choice to go into a hospice to give his family a break. That is one example of how intensive care respiratory therapy can work alongside support from a palliative care team. The priority is for Mauro to be able to feel better, and know that support is available to him and his whole family. This avoids further trips to the ER in search of a bed in intensive care—which often is not available—and where you would not be as comfortable in the final days of your life as you would be at home or in a hospice, which have different priorities to a hospital. Even in a hospital environment palliative thinking must be given its place— including in ER—and thus counteract the tendency to want to do everything, all the time, for everyone. Tensions in ERs are often as high as people’s expectations, with family members demanding everything immediately. Those who tend to the sick in these types of institutions tend to develop a defensive attitude because it is not uncommon for family members to threaten them, saying they know people in high

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places—or they are themselves journalists, politicians, lawyers or judges—and they will go to the press or sue them if things are not done immediately—and above all the way they want. The logistical and organisational problems in an emergency room are real: communication between those anxiously waiting and those looking after the sick is often poor. Time is in short supply, but the greatest culprit is poor organisation; people are right to complain. Nevertheless, the underlying problem remains: when is organ failure ‘end-stage’? At what point is it no longer worth insisting? At what point are we creating ICU patients that have no hope of leaving, and thus impeding access to beds for those with better chances? • One particular case springs to mind: it concerns Maria, a lady well into her 80s who suffered from amyotrophic lateral sclerosis in its form with advanced dementia. She was brought to the ER for respiratory failure. The anaesthetist was unsure whether to intubate her, given that the patient could not decide because of her weakened cognitive capacities. Maria’s husband, a lawyer, put pressure on the resuscitation team leader, saying that his wife had the right to everything, right away. She explained that it was difficult enough for a cognitively healthy person to bear life as a tetraplegic on a ventilator with a tracheotomy, let alone those who could not understand; her attempts proved futile. The threats became verbally aggressive. The colleague eventually intubated the patient, who was then transferred to intensive care in the respiratory department. It became apparent that sedation would be necessary. The son was remarkably surprised that this state can go on for a long time, even years. Did the relatives not understand? Were they unable to, or did they not want to? This is an extreme case of course, but there are so many stories of sons and daughters not being able to let go of their beloved parents. After I had just given one son the news that his mother—who was well into her 90s—was not going to make it, he said to me: ‘That’s not possible; she’s my mother!’ It can also happen that the dying parent’s pension is the family’s only source of income, and their despair takes on an economic dimension. Deciding whether one should continue treatment or start more invasive procedures in the final stages of organ failure is a complex issue. Given the enormous professional and moral responsibility required, no one should have to take the decision alone. This is partly what led to the creation of the 2013 Shared document on planning care for patients affected by chronic, ‘end-stage’ organ failure [2]. This is how anesthesiologist Giuseppe Gristina introduces the document: Identifying the beginning of the ‘end stage’ in periods of deterioration in advanced, chronic organ failure constitutes a new and complex area of clinical practice, one which involves intensive care and emergency doctors as well as organ specialists in the construction of clinical care pathways that differ from ICU.  The approach should be proportionate to the prognosis, with a

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greater focus on the patient’s comfort and the support of their loved ones than on stabilisation. This modern approach to critical patients with chronic conditions represents a major challenge. Decisions need to be made in a variety of environments, in a short space of time, with limited information; they therefore presuppose an ability to summarise and reflect in the face of a considerable number of biological variables—as well as limited scientific proof, which would help to distinguish between the different treatment options. However, by virtue of an ageing population and a consequent increase in chronic degenerative diseases, doctors will find themselves increasingly involved in situations of this kind. While medicine has been faced with an ‘epidemic’ of chronic degenerative conditions, the biomedical industry has provided a constant flow of pharmacological and technological innovations designed to support organ failure—and will continue to do so. When these innovations translate into critical procedures that pay little heed to the biological limits of human life, there is neither a reduction in mortality nor improvement in the quality of the life that remains. Thus, scientific innovation only serves a paradoxical situation in which costs go up and resources decrease, exasperating the problem of fair distribution without contributing to the genuine advancement of medicine. Clearly, the task of prognosis is a difficult one. This document—the result of a collaboration between resuscitation and organ specialists—provides a resource that can help when debating matters with patients and their families. Naturally, it also demands conscious decisions and a willingness to face the difficulties at hand, both on the part of the patients, their families and doctors, but also policymakers. Aside from the potential futility of certain treatments, the notion that you cannot always do everything for everyone is central. First of all so as not to prolong unnecessary suffering, in which sedated patients are confined to intensive care with no hope— but also to make the best use of already limited resources. But there is more than that: a person at the end of their life has other needs, which we might term biographical or spiritual. In a highly influential book we have already mentioned [3], Atul Gawande sums up the human aspect of mortality as follows: A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives. The necessary prerequisite to living the last part of our lives to the full is being conscious of our decisions. If I cannot accept that I have a given problem and deny its chronic nature, if I look admiringly at physicians in the hope for a new cure and

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do not sharpen my critical capacities—stepping away from the problem and pushing my family forward—the likelihood is that I will come to the end in a way I do not want to. Even today people still hesitate to involve palliative care teams because it sounds like a death sentence. As I write this I am reminded of a situation involving a former colleague, Dr. Paolo. He was 95 when his daughter called me for a consultation at home: her father was not breathing. I found a man much younger than his years, confined to his bed and very short of breath. He had been a GP, and up until 2 years before had kept going to the surgery, by then managed by a much younger colleague. He went there on a voluntary basis, he said, to help out. He had continued to read medical journals. He was in bed when I came in, with a CT scan and a scientific journal for me. Using the CT scan he had self-diagnosed fibrosis of the lungs, and the journal featured a conference at one of Italy’s major study centres for the condition. I could not do any more than confirm his diagnosis: advanced fibrosis of the lungs. He had not looked into it before because he had thought the dyspnoea was caused by his age and heart. His blood oxygen levels were extremely low; he had a small oxygen tank that he was using sparingly. I said that I could prescribe him liquid oxygen, cortisone and some antibiotics for what could also have been a bacterial exacerbation. He asked me about the disease and I said that it got progressively worse; admittedly there were new pharmacological therapies that combated the fibrosis, but that in his case it was very advanced. However, starting palliative care was also a possibility, as this would limit his dyspnoea and meant that he would not die feeling as though he was suffocating. After the above treatment, he felt a lot better: he would get up, he would read. I stayed in touch with his daughter and asked how things were going with the palliative care centre I had suggested. ‘I didn’t call them’, she replied, ‘because I would have had to tell Dad it was palliative care. He doesn’t want to die and won’t hear of it. What he took from the conversation with you, Doctor, was that he shouldn’t die of suffocation’. When I suggested his GP colleague could give him the news the answer was the same: they were too close. I offered to go back to speak to him myself, emphasising the fact that if one did not start with a course of palliative care straightaway there was a very high chance that the service would not be available in time, that an ambulance would have to be called and he would end up dying on a stretcher in the ER. A lack of conscious decisions makes a painful death more likely, one which is extremely difficult both for the individual and their family. But acknowledging that one’s life is coming to an end is not for everyone, not even a former doctor in his 90s. This reluctance to discuss the end-of-life scenario is not only true of patients and their families, but of doctors themselves. I was once called to a consultation on a different ward. The patient in question was confused, suffering from severe dyspnoea and pains all over his body because of the metastases induced by a renal carcinoma. My elderly colleague did not want to administer morphine, fearing that the respiratory failure would worsen. Again, the conviction prevailed that moving on to morphine implied that one had entered into death territory: he did not want to scare the family, even though the end was clearly at hand. I recognise that my

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subsequent comment—to the effect that morphine is not much use under the cypress trees (synonymous with a cemetery in Italy)—was not very constructive, but unfortunately there is still widespread reluctance to adopt pain relief therapies outside of palliative environments. Of course, pain relief therapy and palliative care will never be able to eliminate suffering entirely, at the end; but without even the potential control we have, how can we hope to give any structure to our life and its end? If we are writhing in breathless pain, desperately trying to snatch a bit of air at every gasp, we will think of little else than our body suffering. We will be deprived of the conversations that allow both those departing and those left behind to put their hearts at rest. I am reminded of the mysterious words of John Keats in a letter to his brother: ‘Call the world, if you please, “the vale of soul-making”, then you will find out the use of the world’ [4]. Keats’ words are compared with a vision of the world as a ‘vale of tears’. They imply that the wounds, hurt and grief of a lifetime are not to be ignored; to these, I would add sickness and our own finite nature. All this helps to ‘make a soul’—and it may grant us the consciousness we need for the last stage of our life.

References 1. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-­ small-­cell lung cancer. N Engl J Med. 2010;363:733–42. 2. Documento condiviso per una pianificazione delle scelte di cura nel paziente affetto da insufficienza cronica d’organo ‘end stage’. Documento approvato dal Consiglio Direttivo SIAARTI, 22 April 2013. 3. Gawande A. Being mortal. Medicine and what matters in the end. New Delhi: Penguin Random House India Private Limited; 2015. 4. Keats J.  Letter dated 19 March 1829. In: The letters of John Keats. London: HB Forman. p. 1991.

In the Spotlight or Behind the Scenes?

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We stand there in disappointment and look in consternation at the closed stage curtain that leaves all questions open (Wir stehen selbst enttäuscht und sehn betroffen Den Vorhang zu und alle Fragen offen) Bertolt Brecht The Good Person of Szechwan

I wonder if a chronic condition can better prepare us for the inevitable fact of death. Perhaps it should because chronicity renders our fragility more tangible. On the other hand, many chronic subjects deal so well with their condition that they believe they are invincible. Others, after a lifetime, spent coping with one chronic illness unexpectedly find themselves dealing with another one. In whichever way the end presents itself, with slow signs or suddenly, there are various ways of dealing with it. They all begin with one choice: to make the fact public, or to withdraw from the world and hide behind the scenes? Being in the spotlight has always appealed to narcissists. Something of an anthropological transition is now taking place, distinctly marked by the rise of the selfie. The word appeared in the Oxford dictionary only in 2013; the practice spread during the following years. A selfie is posted on social media: on Facebook, Twitter, Instagram or WhatsApp; then the author waits for comments and likes. There is nothing wrong with this; but when it becomes a prevalent activity impairing concentration at school or at work, when self-esteem begins to depend on likes, it turns into an illness. It is no joke: ‘selfitis’, or selfie addiction syndrome, is a chronic psychiatric disorder. It is the new disease of a new era [1] and it risks taking over not only the sphere of life but also the sphere of death. Many people live their entire life trying to appear and be protagonists. Now the final part of one’s life can also be staged, anyone can see the videos and the photos © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_16

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posted online and express their opinion with a like. Selfies by ill people express this mode of seeing things, of existing and living life to new extremes. The first ‘modern’ story based on illness dates to about 50 years ago: Love story by Erich Segal (1970) is a book that was made into a film, that brought audiences to tears. It is one of the first fiction works in which the sequence illness-hospital-­ therapy-­death is publicly displayed. It was the beginning of autobiographical narration of terminal illness. Without trying to establish which work inaugurated this genre, we may simply consider Mars, a novel by Fritz Zorn published in 1977 [2]. The author introduces himself, on stage, in the opening lines: ‘I am young, rich and cultured, and I am unhappy, neurotic and lonely’; he goes on to say that his family is degenerate, and for this reason he also has cancer. Zorn came from a very wealthy family from the ‘golden shores’ of Zurich, and suffered from depression throughout his life. At the age of 30, he became ill with lymphoma. In the book, he blames his disease on the bourgeois degeneration and offers a psychosomatic explanation for his oncological condition. Zorn died in 1976 at the age of 32. His testimony as a terminally ill patient, who bitterly criticised the wrong ideals of the bourgeoisie, gained worldwide resonance: at that time there was a widespread tendency to provide psychosomatic explanations for diseases. The book was published in a period that is very different from the present one. The link between the end of life and personal self-achievement is well represented by Ken Wilber’s Grace and Grit [3]. In it, Wilber—a psychotherapist, philosopher and writer—makes public his diary along with that of Treya, his wife. The book is not only a detailed account of Treya’s breast cancer and of the treatment she underwent, which culminated with her death, it also describes their shared experience: their feelings, the spirituality they developed, the burden that the disease imposed on their relationship. It is a moving essay, a love story in death and beyond. And then... the internet was born. 2005 marked the beginning of the era of YouTube, the second most visited website in the world after Google. YouTube allows to share videos on the internet, to vote—thumbs up, thumbs down—without having a social media account, for example on Facebook. Today any illness can be looked up on YouTube, together with the information on how to live with it, how to use certain medical devices. There are videos about miracle cures: on YouTube, there are all sorts of unfiltered videos. YouTube is generous. There is one video in particular that became viral. It starred Randolph Frederick (known as Randy Pausch), an IT professor at the Carnegie Mellon University in Pittsburgh. In September 2006 Pausch was diagnosed with pancreatic cancer with metastasis and underwent palliative surgery and chemotherapy. In September 2007 he gave his last lecture—titled The last Lecture. It was part of a series of lectures by renowned academics who were asked to give a hypothetical final talk in answer to the question: ‘What wisdom would you impart to the world if you knew it was your last chance?’ The title of Pausch’s lecture was Really Achieving Your Childhood Dreams. The talk, uploaded to YouTube, then became a book translated into many languages. Pausch was invited to The Oprah Winfrey Show. So why did his lecture attract so much attention? (Fig. 16.1).

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Fig. 16.1  In September 2007, Randy Pausch’s lecture Really Achieving Your Childhood Dreams was uploaded to YouTube and was viewed by millions of people over the next few months. Today it has been watched by 20 million viewers. The lecture also became a book, translated into many languages. Pausch was invited to the Oprah Winfrey Show, a sure springboard for editorial success in the States. (Book cover, Hachette Book edition© 2008)

It is a moving story: a man in the prime of life—47-years old—with three young children—1-, 3- and 5-years old respectively—learns he is about to die of pancreatic cancer, like 37,000 other Americans each year (so he informs us during the lecture). He does not wish to be pitied, he wants to offer a last lesson about life, which also gives the title to his book, The Last Lecture [4]. Pausch talks about his childhood dreams, about the importance of dreaming and of fulfilling one’s wishes. ‘We cannot change the cards we are dealt, just how we play the hand’ is the famous line he used to explain to the youth in the audience that one should never give up on life. The speech was optimistic and full of humour. The filming of this last lecture then uploaded to YouTube represented a completely new way of communicating, different from other more common ways of making one’s voice heard, such as writing a book. In the video, we see Pausch, an attractive man, his home and his family. We even see him doing push-ups; but he is about to die, and he knows it. He has always done his best in life and wants to end life in the same ambitious way. He offers a lot of advice, allowing us to share his personal philosophy: a mix of Calvinistic rigour and esoteric-Buddhist awareness. His tone is always victorious. Much of what he says has already been said, nevertheless, this last lecture quickly became one of the most viewed videos on the internet because of its frank serenity.

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In short, we are all about to die; but Randy Pausch is more aware of this than others and speaks of this as an advantage. In 2008, if one searched for ‘last words before death’ 1370 videos came up. At the time this seemed like an enormous amount of videos. Ten years later, in 2018, there were 5,010,000 videos in English, over 7000 in Italian, 15,000 in German, 11,000 in French and I do not know how many in Chinese, Arabic or Hindu, for the same entry. There are all kinds of videos on the subject. A good Italian example is a video by Marina Ripa di Meana, who spoke to listeners about deep sedation. When life becomes unbearable, it is not necessary to go to Switzerland. This has become a commonplace idea. People repeatedly say things like: ‘when it gets to that point, I don’t want to suffer: I’ll go to Switzerland where euthanasia is legal’, ignoring the fact that a painless death at the end of a terminal illness is also possible in Italy, at home, not with an injection that brings about death in a matter of moments, but with palliative sedation. Who could reach such a vast audience before the invention of the Internet? Goethe, of course. His famous last word, ‘mehr Licht!’ (more light!) seem mysteriously profound, although he was actually only asking to open the other shutter and let more light in: in context, this sounds much less profound and less apt to spiritual interpretations. We are curious about famous people’s last words, but in the past only important people or writers with a publisher were able to leave a trace. Today the possibility of being heard and seen is much more democratic. Anyone can use the stage provided by the internet. Those who choose discretion and a religious, the meditative or spiritual path, behave differently, sharing their condition only with a few intimate people. Others no longer feel the need to communicate at the very end of life. The Hungarian writer Peter Nadas is a good example of this attitude. His book Own Death [5] is peculiar: the text is accompanied by photographs taken by the author, depicting the same tree, a wild pear tree, in more than a 100 images. Nadas describes the event of his heart attack and the cardiac arrest that lasted three and a half minutes: an acute event, a primordial experience that deeply changed him. In the language of transpersonal psychology, it was a peak experience. The text describing the clinical event and the author’s reaction is accompanied on each page by an image of the tree. In the book’s conclusion, the author states that those who have been brought back to life violently go on to live as if nothing—things, people or feelings—really concerned them anymore. When stung, they feel the pain, but it is as if it is someone else’s pain. They struggle to identify what is true. Perhaps this can happen when we feel death is imminent. Others choose different paths: there are those who withdraw and simply defend their own privacy. The death of the well-known Italian entrepreneur Sergio Marchionne came as a surprise to the world: it seems that no one except his family knew about his condition. He was being treated for cancer in Switzerland and kept the information secret. We do not know if he believed he was going to get better, or if he had other reasons for not making the illness public. Another phenomenon called kodokushi, solitary death, has emerged in Japan. Often single men around at age of 50 lose their jobs and let themselves die alone in

References

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their apartments, rather than asking for help. Their corpses are usually found after a long time. This is almost a re-enactment of the ancient Japanese custom that is the subject of a book and of a film based on this book: The Ballad of Nayarama. In very poor mountainous regions, people who turned 60 used to be carried off by their children to the mountain, where they were left to die. It was the price to pay in exchange for the survival of the community—this way it had enough resources to get through the winter. Solitary death is not something that happens only in Japan... A very different attitude is that of people who decide not to speak, write, publish or film, not to communicate this experience, but search for a more discrete way to near the end, sharing the journey with only a few intimate friends and relatives. This is the spirit of the invocation by Rainer Maria Rilke: [6]. God, give us each our own death the dying that proceeds from each of our lives the way we loved, the meanings we made, our need. For we are only the rind and the leaf. The great death, that each of us carries inside, is the fruit, everything enfolds it.

References 1. Sai KG, Komal KT.  Selfie syndrome: a disease of new era. Res Pharm Health Sci. 2016;2(2):118–21. 2. Zorn F. Mars. New York: Alfred A Knopf; 1982. 3. Wilber K. Grace and grit. Berkeley: Shambala; 2001. 4. Pausch R, Zaslow J. The last lecture. Hyperion Books; 2008. 5. Nadas P. Own death. Göttingen: Stiedl Verlag; 2004. 6. Rilke RM. Book of hours. New York: Riverhead Books; 2005.

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‘When you think you have all the answers, life changes the questions’: this is the wisdom offered by Charlie Brown. I am aware that I have barely introduced the issue of chronicity, and that many questions have been left unanswered, perhaps different from the ones we considered here. If we think about what will be possible when, in the near future, robots will be assigned the care work that nurses presently carry out, it is evident that we will have to radically rethink the idea of ‘humanisation’ being invoked today. In The Industries of the Future [1] Alec Ross describes possible future robotic scenarios. Japan seems to be very confident that robotics will provide the answer to the increasing need for assistance for the elderly, in a world in which birth rates are rapidly declining. Japan has made major investments in this area. It is fair to imagine that this is the path that will be taken by wealthy countries and people. It could lead to a world where nurses manage robots, but also tend to the needs of the sick and elderly. In short, it could help shape a better world. We cannot help but think that this may not be the case, that robots could well replace human staff deemed too expensive, leading to a further deterioration of ‘real’ relationships, which are increasingly reduced to being timed performances (Fig. 17.1). Or should we settle for verbal contact with humanoids? Or perhaps a digital relationship with smart speakers such as Alexa? Such a scenario is well depicted in Spike Jonze’s 2013 dystopian film, Her, in which the main character falls in love with an artificial voice. AI systems are increasingly developed and better programmed, also based on feelings; these systems can execute orders when connected to household devices. If I put myself in the shoes of a tetraplegic person who is confined to his or her bed, I ask myself what would I prefer: a human assistant who becomes impatient, having been called already 10 times, and tells me to wait, or an unemotional humanoid, whose batteries, and this is the worst thing that could happen, might run out? Of course, I would prefer the robot to see to trivial things, ideally in combination with a patient and understanding nurse, with whom I could have a real conversation about possibilities, about the future and about therapies. Hence, we have two scenarios: the end of humanised assistance, because of the prevalence © The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0_17

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Fig. 17.1  In 2015 the Japanese designed Robear, a bear-like robot capable of lifting people with physical disabilities; in the meantime, Honda has developed Asimo (an acronym for Advanced step in innovative mobility). Toyota is working on the humanoid Robina, a nurse helper, a 6 feet tall and 60-pound robot than can communicate using words and gestures. Robina is a female robot, with helmet-shaped hair and a flowing metal skirt; one version can play the trumpet while another can play the violin. (credit: catwalker, Shutterstock.com)

of robots; or, on the contrary, robots freeing up resources for truly human relationships in care work. All this is, of course, science fiction, at least for the time being. In any case, the path we take will depend on the choices we make. The reflections I have developed are intended to help us take a glance at what happens behind the scenes of an imagined healthcare and to serve as a provocation to start thinking seriously about human lives in which health is increasingly combined with chronicity. This is the condition we will all have to face unless what is in store for us is a sudden (and in this sense lucky) death. And even though we might not be involved directly, chronicity will still be part of the life of a family member or a friend. Or, it will involve us as healthcare workers. In short, chronicity is something we will be forced to deal with at a certain point. If I were a powerful politician, capable of changing things drastically, what would I do? Sometimes I fantasise naively like this. Here is what I would do: I would try to change the current healthcare system on the basis of a realistic acceptance of the great changes taking place in our society. I would start by renovating hospitals, not only cutting beds and staff, but transforming them, I would maintain the centres of excellence for major acuity, but at the same time I would open wards for functional long-term care, promote assisted living projects, structures where people can live autonomously but where they would also be able to

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request nursing and medical help. I would also employ humanoid robots for assistance in lifting people, turning them over and taking care of them, relieving nurses’ backs. I would revolutionise general medicine, making it the pivot of change; I would set up teams of general medicine composed of physicians, nurses, physiotherapists and perhaps also psychologists, I would create small centres in the neighbourhoods, accessible to all. I would promote facilities that would be beautiful from an architectural point of view, with the help of visionary architects: residences where light streams in, with functioning car parks and lifts, with works of art in the wards and in the waiting rooms (Fig. 17.2). I would render schools and hospitals the cities’ business card. I would promote the paradigm of chronicity: in schools, in art and in literature, in film and in music. Beyond these fantasies, I look around and with great sadness I realise that none of the people in power and in politics have such aspirations, nor do they look further into the future, going beyond the next electoral deadline. We are forced to debate with those who believe science is superfluous and manoeuvred by Big Pharma, who do not see the enormous progress that has been made, and the diseases we have defeated; we shut down in paranoia, preventing new horizons from opening up: for the young who flee the country, and for the elderly, for the people who are not

Fig. 17.2  The Sant Pau Hospital in Barcelona, a UNESCO World Heritage Site since 1997, is the largest modernist complex in Europe. Built between 1902 and 1930, it is the work of Lluís Domènechi Montaner. He is considered, together with Gaudí, the most important exponent of Catalan modernism. The hospital is a garden-city with streets, pavilions, churches and a convent. The various pavilions are connected by underground passageways, while outside there are numerous decorative elements and lush vegetation in between the various buildings. (credit: TTstudio, Shutterstock.com)

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self-­sufficient or who are ill. Also, there seems to be no awareness of the great paradigmatic shift taking place in an ageing population, of the road that leads to chronicity. And yet I insist on being ‘chronically’ confident. I confide in the energy of creative young people that may make space for those whose life is marked by chronicity and yet expect to be ‘diversely well’. That is, with a chronically imperfect health: as imperfect as life itself.

Reference 1. Ross A. The industries of the future. New York: Simon & Schuster; 2016.

Index

A Acuity, 19 Acute episode, 19 Acute events, 16 Acute illness, 19 Addiction, 85 Adherence, 64 Advance treatment arrangements (ATAs), 96 AI systems, 115 AIDS, 35, 53, 103 Alcohol, 85 Alcoholics Anonymous, 87 Alighieri, Dante, 47 Allergic condition, 18 Alzheimer’s disease, 42, 96 Amyotrophic lateral sclerosis (ALS), 15, 96–98 Anorexia, 4 Anticipatory Healthcare, 73 Anxiety, 29, 86 Arminio, Franco, 42 Arterial hypertension, 14 Artificial pneumothorax, 33 Asimo, 116 Assal Philippe, 19, 23 Assisted healthcare residences, 43, 45 Asthma, 20, 59, 61, 62 causes of, 63, 71 eBook on, 68 fatal phenotype of, 60 guidelines, 70 medication, 60 studying twins of parents with, 62 Asthmatics, 23 Ayurvedic medicine, 53

B The Ballad of Nayarama, 113 Bedroom emigration, 42 Big Pharma, 117 Biological reductionism, 42 Bipolar disorder, 85 Blood lipids, 77 Blood pressure guidelines, treatment, 1 treatment of, 77 Boccalon, Roberto, 28 Breast cancer, 110 Bronchial asthma, 17, 60, 62 Bronchidilation test, 17 Bronchodilator, 17, 18, 21–22 Bronchopneumonia, 29 Burnout, 28, 30, 82 Buzzati, Dino, 40 C Cancer, treatment for, 3 Cardiovascular diseases, 12 Care hospice, 44 rainbow of places of, 39–48 Caregiver syndrome, 30 Catalan modernism, 117 Charter of Citizens’ Rights, 41 Chemotherapy, 2, 110 Chinese herbs, 59 Cholesterol, 1 Chronically ill patients, 21–24, 36 Chronic bronchitis, 1, 4 Chronic care model (CCM), 3, 74

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2021 D. Rinnenburger, Chronicity, https://doi.org/10.1007/978-3-030-66873-0

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Index

120 Chronic condition, 4, 5, 31 Chronic dependence, 82 Chronic diseases, 4, 14, 19, 23, 29, 53 Chronic, ‘end-stage’ organ failure, 104 Chronic illness, 95–101 burden of, 23 Chronicity, 2, 17, 19, 20, 25, 30, 47, 75, 115, 116 burden of, 17–20, 31 clusters, 6 definition of, 12 emergency, 43 paradigm of, 117 paradigmatic shift, 2 perception of, 9 Chronic obstructive bronchitis, 64, 103 Churchill, Winston, 6 Civil Protection, 46 Clinical decision-making, 92 Clinical Pedagogical Laboratory and Biomedical Research Association, 68 Compliance, 14, 15 catastrophic data on, 64 Conscious decisions, lack of, 106 Controlled asthma, 63 Coping, 21 Corazzini, Sergion page, 36 Coronarography, 78 Coronavirus, 47, 48 Coughing machine, 102 Court of Patients’ Rights, 41 Covid-19 pandemic, 41, 43 Crown, The (Churchill), 6 D Davies, Paul, 2 Day-to-day well-being, 19 Degenerative neuromuscular disease, 102 De Maistre, François, Xavier, 39 Dementia, 96 Depression, 85 Di Biagio, Gioia, 88 Diabetes, 54 Diagnosis Related Groups, 42 Directly Observed Treatment Short-course (DOTS), 35 Disability, chronic situations of, 1 Disease mongering, 1 Disempowerment, 48 Distress, 28 Dolantin, 82 Domestic violence, 29

Drug addiction, 85 Drugs, use of, 83 Dyspnoea, 102 E Eating disorders, 4 Ebola, 47 Educational therapy, 61, 67–71 Ehlers Danlos syndrome, 88 Emergency room, 8 Emotional exhaustion, 28 Epidemiological shift, 51–57 Evidence-based medicine, 70, 90 Exacerbations, 77 Excessive nutrition, 13 Excessive weight stresses, 4 F FederAsma, 89 Fentanyl addiction, 82 Fibrothorax, 34 Foucault, Michel pahe, 41 G Gawande, Atul, 24, 75, 76, 78, 105 General Medical Council (GMC), 82 General Medicine, 117 Global Action Plan, 13 Global Preparedness Monitoring Board, 47 Global Risk Report, 47 Goethe, Johann Wolfgang, 112 Gomer, 26 Grey’s Anatomy, 8, 82 Gristina, Giuseppe, 104 H Hart, Julian, 55, 56, 73, 75 Healing machines, 41 Healthcare policy, 55, 88 Healthcare professionals, 19 Healthcare system, reorganisation of, 4 Heart transplant, 8 Hmaps, 89 Hodgkin’s Lymphoma, 89 Home care, 7 Homeopathy, 59 Hospice, 44, 45, 47 Hospital infections, 45 The House of God, 26–28 Humanisation, 42, 48

Index Hygiene hypothesis, 62 Hypoventilation, 4 I Iaconesi, Salvatore, 41 Illness, 110 Immigrant caregivers, 42 Incremental care, 75, 78 Incremental medicine, 77, 78 Inhalation technique, 64 Initiative anticipatory healthcare, 73, 75 Initiative anticipatory medicine, 56 Institutionalisation, 44 Internet, 88 Inverse Care Law, 73 Italian National Chronicity Plan, 3 Italian National Health System, 42 J Jonze, Spike page, 115 K Kaiser Permanent Model, 53 Keats, John, 107 Kübler-Ross, Elisabeth, 23 L Lacroix, Anne, 19, 23 The Last Lecture, 111 Lymphoma, 110 M Maciocco, Gavino, 52 The Magic Mountain (Mann), 34 Mann, Thomas, 34 Mantegazza, Paolo, 43 Manzini, Antonio, 42 Maternal diseases, 52 Mc Carty, Cormack, 40 Medicine, 8 Mental disorder, 4 Metabolic syndrome, 6 Midnight’s children, 56 Mild bronchial asthma, 1 Minimally disruptive Medicine (MdM), 74 Minor illnesses, 57 Morbelli, Angelo, 44 Morphine, 102 Mortality, 105

121 Moynihan Roy, 2 Multimorbidity, 74, 75 Multiple chronic conditions (MCC), 74 Multiple sclerosis, 42 Myeloproliferative diseases, 89 N Nadas, Peter, 112 Narrative medicine, 90 National Chronicity Plan, 3 National Health Service, 39, 73 National health systems, 3 National Institute of Health, 46 911 (American series), 8 Non-adherence, 63, 64 Non-communicable diseases, 12, 13 Non-compliance, 63 Non-Covid emergency rooms, 47 Non-Hodgkin’s Lymphoma, 89 Non-invasive therapies, 97 Non-invasive ventilation therapy, 102 O Obesity, 77 reduction of, 4 ‘Old age is a massacre’ (Roth), 6 Organ failure, 104 Organ transplant, 92, 102 Orthorexia, 22 Own Death, 112 P Pain, 19 Palliative care, 5, 101, 106 Palliative medicine, 102 Palliative surgery, 110 Pancreatic cancer, 110 Patient Centered E-Health (PCEH), 89 Pausch, Randolph Frederick, 110–112 PEG, 97 Percutaneous entrogastrotomy, 5 Perinatal deaths, 52 Personal attitudes, 2 Personal self-achievement, 110 Pharmacotherapy, 35 Philadelphia Story, 70 Pneumonia, 5, 16 Premature babies, 4 Primary Health Care approach, 56 Primary medical care, 73 Proust, Marcel, 60

Index

122 Psychological models, 23 Psychotherapeutic approach, 63 Public Health, 45 Q Quality of life, 99 R Rappaport, Julian, 89 Really Achieving Your Childhood Dreams (Pausch), 110, 111 Rehabilitation cycle, 36 Respiratory diseases, 36, 37 Respiratory failure, 92, 104 Rheumatoid arthritis, 85 Rhimes, Shonda, 8 Rilke, Rainer Maria, 113 Robear, 116 Robina, 116 Robotic scenarios, 115 Ross, Alec, 115 Rossattini, Stefano, 33 Roth, Philip, 6 S Sacks, Olver, 6 Salbutamol, 21 SARS, 47 Sars-Covid-19, 46 Saunders, Cecilie, 44 Segal, Erich, 110 Selfie addiction syndrome, 109 Selfie with illness, 90 Selfitis, 109 Self-management therapy, 71 Shem, Samuel, 25 Shorter telomere, 30 Siddartha, 53 Simultaneous care, 102 Sleep apnea, 4, 14 Slow Medicine movement, 45 Slums, 54, 55 Social cohabitation, 40 Social media, 87 Solitary death, 112

Solitude, 40 Sonntag, Susan, 36, 37 Spallanzani infectious disease, 46 Spinsanti, Sandro, 92 Spirituality, 43, 48 Suicide, 86 Survival, 2, 27

T Telomeres, 30 Terminal illness, 110 Territorial assistance, 43 Therapeutic education, 68, 70 Therapeutic pneumothorax, 34 Tracheotomy, 29, 97, 101 Transitional denial, 23 Troponin, 84 Tuberculosis, 33–37, 103 transformation, 35 treatment, 37

V Verbal contact, 115 Violence, 29 Voltaggio, Franco, 13 Von Mutius, Erika, 62

W Wagner,Edward H, 73 Warshafsky, Julian, 81 Wilber, Ken, 110 Welfare system, 43 Wellness, 13 Wilber, Ken, 110 World Health Organization, 4, 45

Y Yawn, Barbara, 70 Yellowless, Peter Mackinlay, 23

Z Zorn, Fritz, 110