I am sitting here on Father’s Day and reminiscing about my father. He was born in 1919 into a struggling first-generation immigrant family in Chicago. Over the years he worked hard, as folks who lived through the Great Depression and World War II did in those days, and became a successful businessman. He taught me many things, but above all the importance of interpersonal relationships and the value, the imperative, of always treating everyone with respect and dignity—from your bosses to the housekeepers. This value serves me well, as it did him. He died in 1998 after a short but terrible battle with pancreatic cancer. My mother, to whom he had been married for 54 years, was devastated but eventually bounced back. She is now 86 and in an independent-living apartment—incredibly, totally cognitively intact, but with multiple medical issues, some of which I have previously mentioned in my blogs.
The recent Time Magazine article by Joe Klein, “The Long Goodbye,” (1)got me thinking about the issue of how we as a society approach the impending deaths of loved ones. Klein points out how lucky he and his parents were to get into the Geisinger system, where patient-centric, integrated and holistic care was provided and his parents were cared for, as he would like to be. He states, “Doctors are trained to do whatever they can to save a patient, even an elderly one, and that is an excellent thing. But that Hippocratic impulse has been subtly undermined by the rewards of fee-for-service medicine and by the threat of malpractice suits, which militate in favor of ordering the extra MRI or blood test or dialysis even for a patient who probably has only weeks to live.…” A few days later Austin Considine, writing in The New York Times, noted that Klein was only one of many who have recently written on this topic, with articles in New York magazine and The Atlantic Monthly in the past year articulating the same themes (2). The managing editor of Time, Richard Stengel, notes, “[this is] an issue that’s always on people’s minds…every day there are thousands and thousands of people making these agonizing life-and-death decisions.”
These musings by noted popular writers were brought into focus for me, not because of the frailty of my mother’s medical condition, but by an outstanding article in the recent American Journal of Kidney Disease by Jane Schell and colleagues: Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study (3). The purpose of the article was to better understand with whom nephrologists and elderly patients interact and discuss the future at various stages of kidney disease. The results are fascinating and worth summarizing.
Schell developed a process map of the progress of kidney disease, from diagnosis to disease progression to treatment preparation to dialysis to end of life. She then was able to identify, through questionnaires and interviews, themes for patients and nephrologists at each of these steps. For patients, Schell’s process map indicated diagnosis leads to shock, and then, as treatment preparation begins, patients are quite uncertain about how the disease will progress. As dialysis and further clinical deterioration occur, patients express a lack of readiness for living with dialysis and facing death. For nephrologists, Schell noted there is a real struggle initially to explain how complex kidney disease is, and a real feeling of frustration with the lack of control over the progression of the disease. As dialysis is initiated and clinical deterioration occurs, nephrologists tend to avoid discussions of the future. So what is missing here? We have a failure to communicate! As Schell concludes, “This study shows key areas within nephrologist-patient communication amenable to interventions that address patient understanding and treatment decision making. Effective communication has been shown to enhance patient understanding, shared decision making, and implementation of care plans consistent with patient preferences and goals.… These data show the gaps that exist in how nephrologists and elderly patients discuss and understand the kidney disease course. Interventions that focus on addressing emotion, uncertainty, and understanding may improve patients’ experiences. Effective communication may enhance patient-centered care and promote greater shared decision making.”
It is no coincidence that the recent RPA Clinical Practice Guideline is titled “Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis.” In order to share, one must communicate. Seeing frail, elderly patients in the office quarterly or the dialysis facility only once monthly is insufficient to permit the relationship-building, the establishment of trust, that is essential for true, deep discussions of these personal but critical issues.
Francis Weld Peabody was a distinguished clinician and teacher, educated at Harvard and Johns Hopkins in the early 20th century. His words first published in JAMA nearly a century ago still ring true:
“The good physician knows his patients through and through, and his knowledge is bought dearly. Time, sympathy and understanding must be lavishly dispensed, but the reward is to be found in that personal bond which forms the greatest satisfaction of the practice of medicine.… One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.”
Striving to bring quality to life,
Allen R. Nissenson, MD
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- Klein J. Time Magazine, June 11, 2012.
- Considine A. The New York Times, June 13, 2012.
- Schell J.O., et al. AJKD 59:495, 2012.
