Talking about end-of-life care

“I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.”

That phase is from the Hippocratic Oath, one that physicians accept when they begin practicing medicine. While the words may have many interpretations, it can express the notion that acceptance of mortality––by both physician and patient––may be the best option despite technology and treatment regimens readily available nearby.

It’s not easy thinking about your own mortality. You hope that when it comes, it does so when you want it, and it passes peacefully. But mitigating factors can come into play.

Like the impact of end-stage renal failure.

Those who practice nephrology have always had a difficult time talking about the option of conservative care––withholding dialysis––or suggesting patients withdraw from dialysis. You can still do a lot of things when you are on dialysis (ask Bill Peckham). So why not use the therapy?

Perhaps a good analogy is about people who lived during the Depression, when putting food on the table was a day-to-day struggle. Those who grew up during that time lived their lives as scrimpers and savers, and always told their own kids to eat everything on their plate. Maybe the availability of dialysis today to everyone who wants or needs it contrasts with the “Dialysis Depression” of the 1960s, when people with kidney disease were sent home to die due to a lack of resources. Today, making such draconian decisions is not needed. It’s available; use it.

Analogies aside, individuals who are facing kidney failure need to know there a number of modality options, and one of them is no dialysis. Our cover story this month, “Providing supportive care to patients with kidney disease,” by Jennifer St. Clair Russell and colleagues representing the Coalition for the Supportive Care for Kidney Patients, discusses ways to present that option to patients. “Today, the field of medicine is moving toward an alignment with patients’ and families’ values and goals. Consistent with principles of patient-centered care, there is a concerted effort to consider what the patient wants and effectively tailor care to support their wishes,” the authors write. “Instead of assuming that life prolongation is the single most important goal, patient-centered care helps patients and families realistically balance quality of life, comfort, and the burdens and benefits of treatments.”

The goals of supportive care, the authors note, are to “relieve, reduce, or prevent symptoms and support the best possible quality of life for patients and their families…prolonging life is not appropriate if it overrides patients’ values and is associated with intractable pain and suffering.”

Can dialysis bring about suffering, discomfort, and act merely as a form of life-support? Go to any nephrology conference and ask members of the kidney care team like physicians, nurses, social workers. There are plenty of stories like this. “We dialyze too many patients for the wrong reasons,” is a common refrain.

In a paper he recently wrote for the journal Seminars in Dialysis, Fresenius Medical Care Chief Medical Officer Frank Maddux said patients have differentiating goals based on where they are in life. Although the treatment may be standardized, placing everyone in the same box in terms of expectations and life goals is a mistake. “Today, we dialyze many patients who are confined to a chair or a bed, who will never be in a position to achieve some of the measured goals we have for functional status,” he said.

Maddux acknowledges that nephrologists and other renal care team members are uncomfortable with discussing the supportive care option. “There are social, cultural, and religions norms confounding these discussions and an unfounded fear that discussing the end of life issues with patients will cause our field to regress back to a time of restricted access to care for patients.

“These fears,” said Maddux, “are a barrier to developing a truly personalized approach with standardized care tools for our patients.” Every patient needs individualized goals, and the renal care team should focus on making those goals attainable.

Tonlin-Crine et al. said the results of a survey of Stage 5 patients in their paper, “Understanding by older patients of dialysis and conservative management for chronic renal failure,” published in the American Journal of Kidney Disease, showed that “In most units, knowledge about conservative management was uncommon among patients who had not opted for conservative care.” Said one patient who responded to the survey: “It was presumed that dialysis would work for me…I can’t remember [staff] ever suggesting or saying that there is a third option––of not having dialysis.” And those patients who did choose conservative care did not always get a good explanation of how death would come.

According to the most recent US Renal Data System report (2015; covering data through 2013) 12% of deaths in the prevalent patient population are due to withdrawal from dialysis. That increases to 17% among patients 75 years and older.

Moving forward

Slowly, patients’ rights related to supportive care are becoming a priority. Five states now allow physicians to offer death with dignity: Oregon (the first), Montana, New Mexico, Vermont, and Washington. Voters in Massachusetts narrowly voted down a medical aid-in-dying initiative in a 2012 referendum, and in my home state of Arizona, the End-of-Life Decisions Act was released by Democratic Senator Barbara McGuire last year. It didn’t get a hearing, but she said she plans to keep trying.

We need more training to help members of the renal care team feel comfortable with offering supportive care. The Coalition’s website, www.kidneysupportivecare.org, is a good place to start, with free tools for the dialysis team, including a clinical practice guideline (with accompanying app) issued by the Renal Physicians Association on shared decision-making. And there was good news from the Centers for Medicare & Medicaid Services this year: the agency will now pay for advanced care planning services provided by a physician or other qualified health professional.

We have the resources, and a payer who understand the value. Time to take the next step and make supportive care a standard part of every discussion dealing with modality options. -by Mark Neumann