{"id":5614,"date":"2019-07-10T07:22:23","date_gmt":"2019-07-10T11:22:23","guid":{"rendered":"http:\/\/www.silvercentury.org\/?p=5614"},"modified":"2019-07-12T07:21:48","modified_gmt":"2019-07-12T11:21:48","slug":"what-if-you-dont-want-dialysis","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2019\/07\/what-if-you-dont-want-dialysis\/","title":{"rendered":"What If You Don\u2019t Want Dialysis?"},"content":{"rendered":"

They\u2019re older, they\u2019re chronically ill and their kidneys are failing, but they don\u2019t want dialysis. When they say that, physicians often resist. That resistance is being challenged now by some top doctors and medical organizations. Journalist Judith Graham explains what\u2019s happening and why in this article she wrote for <\/span><\/i>Kaiser Health News<\/span><\/i><\/a> (KHN). It was posted on the KHN website on February 28, 2019. <\/span><\/i><\/p>\n

Susan Wong, MD, sat down with an 84-year-old patient in the hospital, where he\u2019d been admitted with a flare-up of a serious auto-immune condition and deteriorating kidney function.<\/span><\/p>\n

The older man told her he wanted to go home; he\u2019d had a good life and was ready for its end. He didn\u2019t want aggressive care\u2014including dialysis\u2014having witnessed his wife and son die painfully in intensive care years ago.<\/span><\/p>\n

Wong, an assistant professor of nephrology at the University of Washington, was prepared to follow the man\u2019s wishes, but other physicians, eager to pursue tests and treatments, disagreed. For a week, the doctors argued about what to do. Finally, they discharged the patient, who died in hospice care a few weeks later.<\/span><\/p>\n

Older adults with advanced kidney disease who want to forgo dialysis often encounter similar resistance from physicians, according to a <\/span>new study in <\/span>JAMA Internal Medicine <\/span><\/i><\/a>by Wong and colleagues at the Veterans Affairs Puget Sound Health Care System in Seattle, where she\u2019s an investigator.<\/span><\/p>\n

The researchers documented doctors\u2019 reactions by reviewing medical charts of 851 older patients with chronic kidney disease who refused dialysis at the VA health system from 2000 to 2011. In their notes, physicians frequently speculated the patients were incompetent, depressed, suicidal or irrational.<\/span><\/p>\n

With dialysis, people are hooked up to a machine that removes waste from their blood, usually three times a week for four hours at a stretch. Many older adults find the treatments burdensome, and medical complications are common.<\/span><\/p>\n

Yet patients who expressed reservations about this treatment were sometimes labeled as difficult or unprepared to confront the reality of their medical condition. \u201cStill in denial about his kidney disease and his need for hemodialysis in the near future\u2014repeat discussions with patient and wife regarding compliance,\u201d one nephrologist wrote. Even when patients were firm about declining dialysis, doctors repeatedly questioned their decisions.<\/span><\/p>\n

For frail, older patients, dialysis can cause complications, and it may not lengthen life. <\/b><\/p><\/blockquote>\n

\u201cClinical practice guidelines for advanced kidney disease are geared toward survival, not what would give patients the best quality of life or the greatest functional capacity,\u201d Wong said. Another factor at play: nephrologists aren\u2019t trained to ask seriously ill patients what\u2019s most important to them and shape treatment recommendations accordingly. Although most patients want to have such conversations with a kidney specialist, few do so, <\/span>studies<\/span><\/a> have found.<\/span><\/p>\n

\u201cWe don\u2019t really know how to help patients with serious illness make decisions that are right for them or what to do when they don\u2019t really want dialysis,\u201d said Jane Schell, MD, an assistant professor of palliative care and nephrology at the University of Pittsburgh.<\/span><\/p>\n

Conversations about the potential benefits and burdens of dialysis, as well as alternatives, are especially important for frail patients 75 and older who have two or more chronic conditions, such as diabetes and high blood pressure, and difficulty with daily activities such as bathing or walking\u2014a group at risk of experiencing significant complications from dialysis [and] not achieving longer life.<\/span><\/p>\n

Healthier older adults have better outcomes on dialysis\u2014a valuable treatment for many people. \u201cWe shouldn\u2019t limit access to dialysis based on age, but we should have meaningful conversations about goals of care and make it clear that dialysis is a choice and that patients have alternatives,\u201d said Bjorg Thorsteinsdottir, MD, an assistant professor of internal medicine and bioethics at the Mayo Clinic.<\/span><\/p>\n

Options that should be discussed include <\/span>comprehensive conservative care<\/a>,<\/span> which calls for preserving as much kidney function as possible, managing a patient\u2019s health problems, dealing with symptoms such as nausea, swelling, itchiness, pain and breathing difficulties, and preparing for end-of-life care; peritoneal dialysis or hemodialysis at home; and palliative dialysis, a less intensive version of this treatment that keeps people alive for longer but isn\u2019t meant to restore kidney function.<\/span><\/p>\n

Comprehensive conservative care programs are few and far between (in New York City, Pittsburgh, Seattle, San Francisco and a few other locations), but efforts are underway to change that. With funding from the American Society of Nephrology, Schell and colleagues at the University of Pittsburgh have developed an online conservative care curriculum set to debut in [2019]. Nineteen nephrology training programs for physicians are set to participate.<\/span><\/p>\n

Also, <\/span>the Pathways Project<\/a>,<\/span> funded by the Gordon and Betty Moore Foundation, is working to make palliative care (also known as supportive care) for patients with advanced kidney disease widely available. (KHN\u2019s coverage of end-of-life and serious illness issues is also supported in part by the <\/span>Gordon and Betty Moore Foundation<\/a>.)<\/span> Alvin Moss, MD, co-investigator [for] the project and professor of medicine at West Virginia University School of Medicine, said the project hopes to sign up 10-15 dialysis centers this year.<\/span><\/p>\n

It\u2019s important for patients to understand that it\u2019s not always all or nothing\u2014dialysis or death. <\/b><\/p><\/blockquote>\n

Sometimes, patients choose a time-limited trial of dialysis with the understanding that they can change their minds down the road.<\/span><\/p>\n

Cyndy Patton\u2019s 86-year-old mother, Isabel, learned last spring she had advanced kidney disease after going to a Pittsburgh hospital, sickened by repeated bouts of vomiting. Physicians suggested she try dialysis for a few weeks and see if her kidneys might rejuvenate. (The older woman had survived open-heart surgery and a stroke and was living on her own after her husband\u2019s death.)<\/span><\/p>\n

After a week in the hospital and another week in a rehabilitation center, there was no change: Patton\u2019s mother still needed dialysis. Five weeks later, she confessed to her daughter that the treatment was making her miserable. But giving it up felt like committing suicide, she told Patton\u2014an unacceptable option.<\/span><\/p>\n

A week later, Isabel had changed her mind. \u201cThis is not a life I care to lead, being hooked up to these machines,\u201d she told Patton. \u201cWhat am I doing this for?\u201d The older woman had consulted with Schell at the University of Pittsburgh about palliative care and hospice care, and she chose hospice.<\/span><\/p>\n

Dialysis ended and the family gathered at Isabel\u2019s bedside. \u201cShe was all ready to die\u2014but she didn\u2019t, and is still living to this day,\u201d Patton said.<\/span><\/p>\n

It\u2019s an example of how hard it can be to predict what will happen to any given patient with advanced kidney disease. What\u2019s important for the patient to understand is that \u201cit\u2019s not always all or nothing\u2014dialysis or death,\u201d Thorsteinsdottir said.<\/span><\/p>\n

\u201cPatients have to be very assertive and tell their medical team: this is what I want and what I don\u2019t want,\u201d Moss said. For more information, he suggested people explore the websites of the <\/span>Coalition for Supportive Care of Kidney Patients<\/span><\/a> (he chairs that organization), the <\/span>National Kidney Foundation<\/span><\/a> and the <\/span>American Association of Kidney Patients<\/a>,<\/span> and \u201creally spend some time learning about your options.\u201d<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Susan Wong, MD, sat down with an 84-year-old patient in the hospital, where he\u2019d been admitted with a flare-up of a serious auto-immune condition and deteriorating kidney function.<\/span><\/p>\n

Read more What If You Don\u2019t Want Dialysis?<\/span> ›<\/span><\/a><\/div>\n

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