Patient-based continuum of care in nephrology: why read Thomas Addis’ JN
Transcription
Patient-based continuum of care in nephrology: why read Thomas Addis’ JN
JNEPHROL 2010 ; 23 ( 02 ) : 164 - 167 REVIEW www.sin-italy.org/jnonline – www.jnephrol.com Patient-based continuum of care in nephrology: why read Thomas Addis’ “Glomerular Nephritis” in 2010? Giorgina B. Piccoli Unit of Nephrology, Department of Clinical and Biological Sciences, San Luigi University Hospital, University of Torino, Orbassano, Torino - Italy Affectus qui passio est, desinit esse passio, simulatque eius claram Abstract et distinctam formamus ideam The name of Thomas Addis (1881-1949) is linked to several aspects of nephrological practice: from the “Addis count” of urinary elements, to the history of diet in chronic kidney diseases. He was accustomed to working with limited funds, and developed his theories with relatively simple means, combined with the careful, long-term observation of single cases. His political ideas were progressive; his outlook on life was optimistic. This is deeply reflected in his Glomerular Nephritis: Diagnosis and Treatment, a book worth reading in the era of chronic kidney disease (CKD), as it contains sharp analyses of the organizational aspects, and accurate comments on the role of the physician – all subjects of interest for the present times and challenges. One of Addis’ ingenious ideas was to follow his patients throughout their lifelong disease, thus anticipating the theories of continuum of care and of therapeutic alliance between patients and physicians. He used to tailor his prescriptions and frequency of controls to each patient and phase of the disease, thus anticipating the tailored therapies and the patient empowerment presently considered as fundamental in chronic diseases. Furthermore, he suggested that physicians should work outside the hospital in small coordinated teams, in which volunteers, dietitians and laboratory technicians would play a crucial role. Patient-centered care and the importance of nonmedical team members are clear from the first lines of his book. As far as we know, he was the first physician to stress the role of volunteers in CKD, anticipating by decades nonprofit organizations such as the National Kidney Foundation. Key words: History of Nephrology, Organizational issues, Thomas Addis 164 —Spinoza, Ethics, part V, prop. 3 (1) Almost every nephrologist has heard at least once of Thomas Addis (1881-1949). For most of us, his name brings to mind the “Addis count” of urinary elements, still given great importance in several medical schools, including ours, up to the late 1970s. Furthermore, each comprehensive review on diet in chronic kidney diseases (CKDs) mentions his name, usually within the first few paragraphs. Indeed, he was probably the first clinician to understand the potential benefit of curbing protein intake through the various phases of what we now call CKD, but which was often considered almost a synonym of Bright’s disease (1, 2) back in the 1920s-1940s, when Thomas Addis did most of his work. What is probably less well known is that he described kidney tissue hypertrophy and suspected the existence of an “overwork effect” on the remnant functional units, merely by studying mice models and observing changes in the morphology of casts in the urinary sediment. In fact, he could count on minimal laboratory supplies: he essentially relied on the intuition that CKD history could be described by long-term observation of single cases. By those relatively simple means, he was able to anticipate by around 4 decades Brenner’s theories on remnant nephron hypertrophy: “in general, then, our subject is the theory of the application of this principle of rest in the case of any patient in whom any disease has led to a substantial reduction in the number of functioning nephrons…” (Introduction to (1)). Thomas Addis’ theories and practical approaches to diet probably saved the life of Nobel laureate Linus Pauling, © 2010 Società Italiana di Nefrologia - ISSN 1121-8428 JNEPHROL 2010 ; 23 ( 02 ) : 164 - 167 Fig 1 - Thomas Addis. Glomerular Nephritis, a small, simple, blue book (1). Fig 2 - The first pages of Glomerular Nephritis: Diagnosis and Treatment (1). who suffered from glomerular nephritis, allowing him to become the first man to win 2 undivided Nobel Prizes (3). It is even less acknowledged that his political ideas were truly progressive: their potential danger at the time was such that his wife destroyed most of his papers after his sudden death in 1950, fearing the implications of being considered a communist in the McCarthy era (4). Because of these fears by his wife, Linus Pauling wrote Addis’ biography only after her death: he felt that the political ideas of this great physician were so closely linked to his clinical and research activity that it would be impossible not to mention them. The biography was then written in the 1980s, in a different political climate (4). Thomas Addis died of sepsis, as the result of a nephrectomy, in 1949, soon after finishing his famous book Glomerular Nephritis: Diagnosis and Treatment. The book, published by Macmillan, was probably the first (and possibly the only) clinical nephrology bestseller. It still has devoted collectors, and well-preserved hardcover copies are widely available in Internet bookstores (prices ranging from US $7 to US $20, shipping excluded) (Figs. 1 and 2). It may be worth reading this book now, in the era of CKD, when we are being challenged by the growing needs of an aging population in which the prevalence of CKD is probably as high as 8%-12% (5). One of Addis’ ingenious ideas was to follow his patients throughout their lifelong disease. There is obvious evidence that he never charged his patients more than they could afford (which meant he cared for several indigent people with glomerular nephritis for free) (3, 4, 6). He used to tailor his prescriptions and frequency of clinical controls to his patients and to each phase of the disease: [B]ut whenever we try to apply the theory in practice, we find we cannot use it effectively for any individual patient until we know him and his situation and have learned from direct clinical observation of his blood and urine as much as we can about the nature and the extent of his renal lesion.… Without this knowledge, the application of the principle is only formal and … in detail, very ill-advised. (1) Of note, Addis mentions the patient first, and then the disease; for a writer who cites Spinoza at the beginning of his book, this is not fortuitous, but a deliberate choice. Following this individualized prescription policy, he stressed the importance of acquiring profound knowledge of the clinical and personal history of patients, and suggested that, in the care of this chronic disease, physicians should work outside the hospital in small coordinated teams, in which volunteers, dietitians and laboratory technicians would play a crucial role. Cost constraints due to his choice of not charging the sick and the poor for his services led him to put together a heterogeneous group of people: “since no nurses are assigned to the clinic we asked for help from patients and friends. They were neither biochemists nor dieticians but ordinary people who liked to work in a group of ordinary people to help other ordinary people” (Introduction to (1)). Patient-centered care and the importance of nonmedical members of the team are clear from the first line of the book, which is “dedicated to the patients, laboratory workers, di165 Piccoli: Thomas Addis in 2010 eticians, medical students, and doctors who have worked in the Nephritis Clinic of the Out-patient Department of Stanford Medical School in San Francisco …” (Dedication in (1)). As far as we know, he was the first physician to believe in the role of volunteers in CKD, anticipating by decades the growth of nonprofit organizations such as the National Kidney Foundation (7). Last but not least, decades before the formal description of the concept of therapeutic alliance, he described, in his touching – yet devoid of any unnecessary emphasis – last chapter, “Treatment,” the story of a boy who fell ill with Bright’s disease at age 8 and died in a uremic coma at age 28; he clearly established the principles of a holistic, highly individualized patient-physician alliance, which is increasingly considered the standard for relationships in chronic diseases (1, 8-11). In order to make the matter as objective and concrete as possible, let us consider a particular patient. An 8-year old boy has been treated with penicillin for a beta-haemolitic tonsillitis.… [T]wo weeks later his mother rings up and says that the urine that he voided … looked like coffee. She is sure that his face is swollen.… Returning to the boy … He came home from school in the middle of the day, feeling tired and weak, and did not want to eat his lunch.… The rates of excretion of protein [were] four to five times greater than is usual, and we can see many hyaline and few granular casts with an occasional blood cast.… The boy is not alarmed, because he has been forewarned.… (1) Interestingly, this last chapter of Glomerular Nephritis, describing the disease treatment through the clinical and personal history of this young patient, was considered a fundamental piece of art and science by Bending Scribner, Addis’ former student and the inventor of chronic hemodialysis (4). The detailed technical explanation and the attention to the daily details of this boy’s life are both part of the same description. No general theory of the patient-physician relationship could better clarify the importance of an individual approach to each patient, and the responsibility of the physician in sharing knowledge as the disease progresses: [T]he first question that arises is whether we should show the patient the centrifuge tube that would tell him at a glance that there has been an astonishing increase in the proteinuria. In this particular instance we would not only not let him see the tube … Nor would we tell his mother because to tell her would only be an indirect way of telling him. We would tell no one. The reason is that telling gains nothing but may lose some of that freedom from anxiety that is an element in the patient’s well being and a factor in determining the rate of progression of the disease.… 166 What is being concealed is our fear that the change in the urine may indicate the beginning of the degenerative stage, but it is a fear that is concealed, not a truth.… Honesty is not easy.… [I]t requires discipline and effort.… But while we must share our knowledge with them, we must not ask them to participate to our fears. These are our burdens and we must carry them alone. (1) Besides the beauty of his writing and the richness of his experience, there is probably a deeper reason for reading Glomerular Nephritis: Diagnosis and Treatment again. All too often, we get the impression of having to face too hard a challenge, by treating an increasing number of patients with growing needs and limited budgets (11-13). This is not new, and the importance of effective organization and of rapid and simple approaches is clearly described: Even so, there will still be doubt because someone has to do the work. If the doctor cannot do it, who will? The problem has not been solved; it has only been transformed into a problem of organization that may be equally insoluble. We were forced to contrive a series of extremely rapid methods, so simple and mechanical in their operation that the possibility of large error is excluded, and so direct that the results are presented as pictures whose significance can be read at a glance. We have said that the growth of efficiency in medical service depends on the development of well-co-ordinated teams or groups. The truth of this statement has grown sharper and clearer in the course of writing this book, which itself is nothing else than an account of the work of one such group, and an attempt to derive some immediately useful conclusions ... to consider the meaning of what we have done together. (1) Therefore, after reading the well-balanced and optimistic view of this clinical pioneer, underlining so clearly that medicine is a constant and dynamic discipline, we may wonder, if Thomas Addis held this view 60 years ago, why should we not do so now? It would be thus that we should re-establish for ourselves the proper atmosphere of the group, which lives always at war with itself, no claim being ever advanced that does not meet its counterclaim, no thesis presented that does not promptly elicit its antithesis. It will always be so, because the group as a whole is not interested in anything that belongs to the past or the present, except to break it up and build, from any fragments of truth and usefulness that may remain, a new bridge into the future. The group still carries on, forever immune to the attempt of any individual within it to crystallize its meaning or bound its activities within the confines of a dogma (Introduction to (1)). JNEPHROL 2010 ; 23 ( 02 ) : 164 - 167 Acknowledgements To my father, who followed Thomas Addis’ example throughout his life. To my friend Pietra Selva Nicolicchia, theater director, who made me read his pages as a piece of art. To Dr. Peter Christie, for his careful language revision. Financial support: No financial support. Adress for correspondence: Giorgina Barbara Piccoli, MD Unit of Nephrology Department of Clinical and Biological Sciences Azienda Sanitaria Ospedaliera Universitaria San Luigi Regione Gonzole 10 University of Torino 10043 Orbassano, Torino, Italy gbpiccoli@yahoo.it Conflict of interest statement: None declared. References 1. Addis T. Glomerular nephritis: diagnosis and treatment. New York: Macmillan; 1948. 2. Kopple JD. History of dietary protein therapy for the treatment of chronic renal disease from the mid 1800s until the 1950s. Am J Nephrol. 2002;22:278-283. 3. Peitzman SJ. Thomas Addis (1881-1949): mixing patients, rats and politics. Kidney Int. 1990;37:833-840. 4. Lemley KV, Pauling L. Thomas Addis July 27, 1881- June 4, 1949. Biogr Mem Natl Acad Sci. 1994;63:3-46. 5. Levinsky NG. Specialist evaluation in chronic kidney disease: too little, too late. Ann Intern Med. 2002;137:542-543. 6. Boulton F. Thomas Addis (1881-1949): Scottish pioneer in haemophilia research. J R Coll Physicians Edinb. 2003;33:135-142. 7. www.kidney.org. Accessed August 2009. 8. Hjortdahl P, Laerum E. Continuity of care in the general practice: effect on patient satisfaction. BMJ. 1992;304:12871290. 9. Probert CSJ, Battcock T, Mayberry JF. Consumer, customer, client, or patient. Lancet. 1990;335:1466-1467. 10. Balint J, Shelton W. Regaining the Initiative: forging a new model of the patient physician relationship. JAMA. 1996;275:887-891. 11. Oreopoulos DG. Restoring the therapeutic effect of the patient physician relationship. Perit Dial Int. 1996;16:5-9. 12. Hutchinson TA. The price and challenges of extraordinary success: treating end-stage renal failure in the next millennium. CMAJ. 1999;160:1589-1590. 13. Owen WF Jr. Patterns of care for patients with chronic kidney disease in the United States: dying for improvement. J Am Soc Nephrol. 2003;14:S76-S80. Received: June 29, 2009 Accepted: July 24, 2009 167