The field of nephrology is shifting from an exclusive focus on increasing survival to one that provides greater attention to quality of life. There is an opportunity to integrate many of the advances of palliative medicine into the comprehensive treatment of these patients. (J Palliat Med. 2006;9:977-992 )
The statement above was advanced nearly four years ago, yet as far back as 1991, the Institute of Medicine was calling for a clinical practice guideline that would help practitioners evaluate patients who might be better off without dialysis treatment.
Nine years later, the Renal Physicians Association/American Society of Nephrology (RPA/ASN) Working Group in Washington, DC, obliged, issuing a “Clinical Practice Guideline on Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis” (J Am Soc Nephrol. 2000;11:1340-1342).
In general, the RPA/ASN concluded that withholding or withdrawing dialysis in cases of end-stage renal disease (ESRD) or acute renal failure (ARF) was appropriate for:
Patients with decision-making capacity who, being fully informed and making voluntary choices, refused dialysis or requested that dialysis be discontinued.
Patients who no longer possess decision-making capacity but had previously indicated refusal of dialysis in an oral or written advance directive.
Patients who no longer possess decision-making capacity and whose properly appointed legal agents refused dialysis or requested that it be discontinued.
Patients with irreversible, profound neurologic impairment.
The guideline further instructed that patients who were taken off dialysis receive continued palliative care.
Today, the guideline is being revised, “and it’s going to have even more recommendations with regard to palliative dialysis,” said Alvin H. “Woody” Moss, MD, a coauthor of the Journal of Palliative Medicine report cited above and chair of the RPA/ASN Working Group that introduced the clinical practice guideline a decade ago and is overhauling it now.
Medical evidence grows
Although a 2003 review turned up too little evidence to justify making changes to the RPA/ASN guideline, by 2008 the research landscape had changed considerably. “We determined that there was sufficiently new medical evidence with regard to this whole area of withholding and withdrawing dialysis, and palliative care to make it worthwhile to revise the guideline,” said Dr. Moss, Professor of Medicine and Director of the Center for Health Ethics & Law at West Virginia University’s Robert C. Byrd Health Sciences Center in Morgantown. He is board-certified in internal medicine, nephrology, and hospice and palliative medicine.
Dr. Moss told Renal & Urology News that the working group hopes to have the revised document ready by autumn of this year. “And I can tell you the recommendations are even going to be much stronger now than they were a decade ago.”
Palliative care defined
Rehabilitative dialysis is for individ-uals in whom clinicians are trying to maintain or improve function, whereas palliative dialysis is for people “who we would not be surprised to see die in the next year,” Dr. Moss explained. One major catalyst in the decision to rework the dialysis-withholding/withdrawal guideline is the fact that more than half a dozen studies demonstrate that select patients may live just as long with medical management alone as with dialysis.
“Our research shows that these are patients who are over age 75; have high symptom burden and multiple other medical problems, particularly heart disease; and are often very functionally impaired—for example, they have difficulty transferring from a wheelchair to a dialysis chair,” Dr. Moss said.
“I would propose that we use this definition of palliative dialysis and that we actually incorporate it into our thinking about treating dialysis patients.” Studies conducted by Dr. Moss and others indicate that 15% to 20% of patients in any given dialysis unit would probably fit this palliative-care profile. As the renal population grows older and sicker, so grows an appreciation that palliative care is more appropriate for many of these individuals—either in combination with dialysis, or in lieu of it.
“In the past the thinking always was, ‘You have renal failure; dialysis can save your life,’ and then once you were on dialysis, you were on it until the end,” commented nephrologist Michael J. Germain, MD, Professor of Medicine at Boston’s Tufts University School of Medicine and Medical Director of the transplantation services at Baystate Medical Center in Springfield, Mass. “And once you were on dialysis, [that decision implied] that you wanted to be kept alive at all costs.”
A shift in attitude
Dr. Germain co-edited a book on palliative services in kidney disease called Supportive Care for the Renal Patient (Oxford University Press). A second edition is due out this year, updating the 2004 version. “There have been not only a lot of…studies done over the past six years, but I think there have been changes in the attitudes of nephrologists and renal care providers over those six years, too,” Dr. Germain said.
In updating the text with co-editors Edwina Brown, MD, and E. Joanna Chambers, MD, Dr. Germain came across data that reinforced his belief that dialysis is not always the best course of action. “Recent studies have shown the very, very poor outcomes for patients with renal failure once they’re already in long-term care or go into long-term care,” he said. “Very few of them ever get out or go and live independently. Dialysis may not provide the best quality of life for whatever time some of those patients have left.”
In many of those cases, “probably the better thing would be to not start dialysis at all.”
Like Dr. Moss, Dr. Germain pointed to the somewhat startling findings of the past few years that have showcased the benefits of conservative management in patients who choose not to undergo dialysis. “What’s really surprising about some of these studies is they show that a certain subset of patients will live just as long if they don’t get dialysis as if they did get dialysis.”
He acknowledged the counter-intuitive nature of this concept. “If you have a glomerular filtration rate (GFR) of 10 and you choose not to have dialysis, well, you’ll probably die sooner,” Dr. Germain said. “But we see that while that might be true for ‘all’ patients, in a certain subset of people over 75 who have comorbidities, evidence suggests these people might live just as long if they choose not to have dialysis, and may have a better quality of life in their remaining time. They may have a low GFR, but it stays there—their renal impairment doesn’t progress, and they’ll die of something else, but not uremia or renal failure.”
Lewis M. Cohen, MD, agrees with Dr. Germain, his Baystate colleague and frequent research collaborator. “The tradition in nephrology—as in medicine in general—has been to view death as an enemy to overcome by any means,” said Dr. Cohen, Director of the Renal Palliative Care Initiative, a collaboration between eight dialysis units and Baystate Medical Center. “A generational shift has taken place, with some balance now being provided by interest in quality of life.”
Dr. Cohen practices psychosomatic medicine and psychiatry with a special focus on end-of-life issues. He addresses these controversial matters in his newly released book, No Good Deed: A Story of Medicine, Murder Accusations, and the Debate Over How We Die (HarperCollins). The book is an account of two Massachusetts nurses who were accused of murder when they helped alleviate a dying patient’s pain and suffering.
Dr. Cohen also was lead author on the Journal of Palliative Medicine report cited at the start of this article. Asked what progress has been made in integrating palliative dialysis or other palliative care into the typical dialysis setting since that study was published, he responded: “Each year has seen an increase in the number of ESRD deaths preceded by a decision to stop all treatments. Each year has seen more research into the symptoms experienced by dialysis patients. Each year has seen more emphasis from CMS [Centers for Medicare & Medicaid Services] and other organizations in encouraging completion of health-care proxies and living wills.”
According to Dr. Cohen, the most common mistake people make when discussing palliative dialysis is to assume that it’s only about providing end-of-life care. “It certainly attends to those issues, but it is also about focusing on symptom amelioration for all dialysis patients,” he said. “This is something that nephrology has paid less attention to until recently.”
Kenneth Covinsky, MD, MPH, concurred. “One thing to keep in mind when thinking about palliative care in ESRD [is that] there is often a mistaken belief that one must choose either palliative care or life-prolonging care,” said Dr. Covinsky, who holds the Edmund G. Brown, Sr., Distinguished Professorship in Geriatrics at University of California-San Francisco (UCSF). “But palliative care and life-prolonging care can be delivered simultaneously.”
In the case of dialysis, then, it is quite possible that a patient would choose to start or continue dialysis, but would still benefit from palliative care, observed Dr. Covinsky, who also serves as a staff physician at the San Francisco VA Medical Center and is a prominent contributor to GeriPal, an online forum dedicated to geriatrics and palliative care news, research, and discussion (www.GeriPal.org).