Monographs of the Víctor Grífols19 i Lucas Foundation The person as the subject of medicine Eric Cassell The person as the subject of medicine Monographs of the Víctor Grífols19 3999 18/01/10 19 i Lucas Foundation The person as the subject of medicine Eric Cassell ISBN 978-84-692-0780-2 Monographs of Edita: Fundació Víctor Grífols i Lucas. c/ Jesús i Maria, 6 - 08022 Barcelona the Víctor Grífols19 [email protected] www.fundaciogrifols.org i Lucas Foundation The person as the subject of medicine CONTENTS Page Presentation Ramón Bayés ................................................. 7 What is a person? ............................................. 11 What is a Sick Person? ......................................... 25 What is Autonomy in Sick Patients? ............................. 39 About the autor: Eric Cassell.................................... 51 Publications .................................................. 52 5 The person as the subject of medicine PRESENTATION In October 2007, the Victor Grifols i Lucas Foundation inaugurated the Josep Egozcue Lectures with a presentation by Daniel Callahan, International Pro- gram Director at the Hastings Center in New York. A year later, Eric Cassell, Professor of Public Health at the Faculty of Medicine at Cornell University, kept up the high standards set in the previous year’s lectures. Several years ago, as part of an Oncology Workshop organized by the College of Doctors of Barcelona, I was part of a panel which also included an oncolo- gist from the Hospital de San Pablo, Carmen Alonso, who mentioned a piece by Eric Cassell which had appeared a short while before in the New England Journal of Medicine. This was the first time I had heard his name, and I was so impressed by Dr. Alonso’s contribution that I asked her for the details. A few days later, I received a copy of the full article by post –this was back in the days when computers and the internet were still a thing of the future1. From that moment on, Eric Cassell has been a constant source of inspiration for me. I have followed his publications closely and he has had a major influ- ence on much of my subsequent work in the field of health. If anyone wants to explore his line of thinking, I would recommend that they read: a) The groundbreaking lecture2 given by another famous doctor, Francis Peabody, in 1927 at the Harvard Medical School: «What is spoken of as a ‘clinical picture’ is not just a photograph of a man sick in bed; it is an impressionistic painting of the patient surrounded by his home, his work, his relations, his friends, his joys, sorrows, hopes and fears.» b) Twenty pages of a book by Laín Entralgo3. c) «The goals of medicine», often referred to as the Hastings Report, which is available in Spanish and Catalan translation on the Foundation’s website4. d) The article by David Callahan, «Death and the research imperative»5. e) The second extended edition of Cassell’s book, The nature of suffering and the goals of medicine6. 7 The person as the subject of medicine If one had to sum up the essence of Eric Cassell’s work, it would be hard to do better than to quote the author’s own thought-provoking observation: «Bodies do not suffer; persons do.» Now 80 years of age, Eric Cassell continues to play an active role in life. Like David Callahan, like the centenarians Moisés Broggi and Rita Levi-Montalcini, he is walking proof that in many cases the rule of «retirement at 65» is noth- ing more than an expression of administrative rigidity, age discrimination and social impoverishment7. Ramon Bayés Professor of Basic Psychology and Emeritus Professor at the Autonomous University of Barcelona and Member of the Board of Trustees of the Víctor Grífols i Lucas Foundation References 1. Cassell EJ. «The nature of suffering and the goals of medicine». N Engl J Med 1982; 306: 639-45. 2. Peabody FW. «The care of the patient». JAMA 1927; 88: 877-82. 3. Laín Entralgo P. La relación médico-enfermo. Madrid: Alianza, 1983 (pp. 273-92). 4. Hastings Center (1996). Goals of medicine: setting new priorities. 5. Callahan D. (2000). «Death and the research imperative». N Engl J Med; 342: 654-6. 6. Cassell EJ. The nature of suffering and the goals of medicine (2nd ed). New York: Oxford University Press; 2004. 7. Bayés R. Vivir: Guía para una jubilación activa. Barcelona: Paidós; 2009. 8 9 What is a person? The person as the subject of medicine Introduction: The Sufi Parable about the cern of medicine and of physicians. This has culminated in the present call blind men and the elephant for patient-centered medicine. There have been notable steps along the way: Remember the parable of the blind men and the elephant. One feels its side n In 1951 Carl Rogers, a psychologist, wrote about client-centered the- and thinks an elephant is a wall, another, its trunk and thinks an elephant is rapy. a snake, yet another felt its tusk and thought it a mighty spear-like animal, n In 1970 Michael Balint, a psychiatrist, wrote about patient-centered and so forth. They all ran to the city to tell people what an elephant was. We medicine and the name caught on. rarely hear about the last man to go to the elephant, an old man, also blind. n In 1977 Ralph Engel wrote a famous paper describing biopsychosocial He took his time going around and around, studying the elephant in every medicine which aroused great interest but did not change practice. detail. Then he returned to the city to find that everyone had taken sides and was arguing about what an elephant was. He laughed and laughed, remem- During these decades there have been marked social changes in the US so bering how foolish he had been when young thinking he knew something that previously peripheral groups came into the mainstream of personhood when he only knew a part of it. He laughed hardest, however, when he real- –the civil rights movement, the reemergence of the women’s movement, ized that he was the only one who didn’t know what an elephant was. people with disabilities, and most recently gays have achieved full person- hood. I, of course, I am an old man who has spent a lifetime working with, study- ing, and thinking about what persons are. This isn’t so funny, however, As part of this, patients also became persons. The emergence of bioethics as because I have to give a lecture on the subject. I think the old blind man, a force in medicine with its emphasis on respect for persons and autonomy when he got to his home would have reflected and realized that an elephant played a part in these changes. So at this time, the flag of person-centered is a very complicated thing. Maybe it is a good idea to think of elephants (or medicine flies from the top of most American medical schools and hospitals, persons) one way or another depending on what you want to do with the but the medicine practiced on their floors remains disease centered. knowledge. It seems reasonable –though quite unusual– to stop to answer the question, I don’t know anything about elephants, but I do know about persons and I «What is a person?» You would think that because of its intrinsic interest –af- think it is reasonable to say first why the subject has come up. Probably from ter all we are all persons– the literature would be littered with in depth explo- the first doctors have known that it makes a difference who the patient is. rations –but it isn’t. In the era of high mortality rates and acute diseases –maybe until after World In medicine when we consider something –the liver or genes– we are very War I– these differences in persons may not have had a big impact on the careful to define what we mean by the terms. Person seems to be an exception outcome of care. In our era most people die of chronic diseases, and disabil- to that. Perhaps because the subject is daunting –«Where do you start and ity rather than only death is the dreaded outcome of sickness. For our dis- where will it end». eases the nature of the person has a major effect on the origin, diagnosis, On the other hand because we are all persons, what a person is seems self- course, treatment and outcome of the disease. evident –and it is until you actually start trying to write it down. The subject Because of this knowledge, for fifty or so years medicine has been trying is of more immediate interest to medicine because, there are changes in the unsuccessfully to put the person rather than the disease as the central con- nature of persons when they are sick. 12 13 The person as the subject of medicine Changes that have an impact on how the sick are to be treated, on ethical are internally cohesive and coherent. Thus each person may be more than issues such as autonomy that cannot be avoided. Sickness and its effects on one self. For example, when people return to their family home, even after the person can only be understood with the back ground of knowledge about they have become adults, they may find themselves behaving as they did everyday personhood. when they were children. Then there is the social out-in-the-world and in- the-office self: the home-with-the-family private self, the bedroom-very- private self, and so on. These different presentations to different worlds are Is the subject of this talk the Self or example of the fundamental social rule –one must get along– of this, more the Person? later.