Dialysis Patients and Death–A Taboo Subject?

By Beth Piraino, MD

People who are chronically ill should be talking to their doctors about their medical prognosis, one would think. And yet a new study released this week shows that many kidney failure patients on hemodialysis are in the dark about the severity of their condition.

Researchers interviewed hemodialysis patients and their doctors about their understanding of their prognosis. These patients had at least a 20% risk of dying within the next year—they were 70 years old, on average, and many were also diabetic and had other medical problems. It turned out that the patients were more optimistic than the nephrologists, or kidney specialists. Not surprisingly, none of the patients had discussed their prognosis with their nephrologists.  And yet, a patient who understands his own medical prognosis can make better-informed decisions about treatment and so, this lack of communication is problematic.

Nephrologists historically have not been trained to initiate discussions with their patients about end-of-life care. Patients, in turn, may be reluctant to bring up this subject with their health care team.  Other researchers at the University of Pittsburgh and Duke University have recently addressed this gap in training with a program they developed to teach kidney specialists-in-training how to conduct empathetic and open-ended discussions with patients about prognosis and health care planning. This program was successful and hopefully, will be put in place more widely.

On the patient front, those on dialysis need to know that it’s okay to talk about pain, depression and end-of-life decisions with their health care team. All dialysis patients should know that their health care team–the nephrologist, the nurse, social worker and the dietitian–meet to discuss each patient’s care plan at least once a year, and more often if the patient is anemic, has recently been hospitalized or is experiencing other serious complications. The patient can and should ask to participate in this process and this is an opportunity for him to bring up any tough issues, become fully engaged and help shape his own care plan.

For years, I have been taking care of a retired physician with advanced kidney disease and poor heart function, who is now 92 years old. Every two weeks, I arrange a home visit to draw his blood, and then follow up with a phone call to review the results and find out how he is feeling. Much of the conversation revolves around his wishes to stay at home and avoid further hospitalizations for the remainder of his life. That is his choice and I appreciate that he and I can communicate openly about his feelings regarding end of life care. Not every patient with a poor prognosis wants to discuss end of life care, but as complications develop on dialysis, many more do want to know and to make their decisions in a fully informed fashion. Clearly, this study shows that these important discussions are not happening often enough. So if you’re a dialysis patient or nephrologist reading this post, please start a conversation today.

Dr. Beth Piraino is the President of the National Kidney Foundation

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3 Responses to Dialysis Patients and Death–A Taboo Subject?

  1. NIsreen says:

    i do agree my husband is heading toward dialysis and our doctor never talks about the risks or preventions for this disease its disappointing to no how careless doctors can be

  2. Davetta Domebo says:

    Hemodialysis is not a good experience. I watched my Mom and Aunt suffer through it. Now my husband is suffering. I support the idea of artificial kidney or pancreas. Health science research needs to hurry up with progress and success.

  3. Hey Joe says:

    I disagree with the premise of this article. I don’t think dialysis patients are stupid or uniformed about the severity of their prognosis. In many cases they “BELIEVE” in their survival in spite of the statistics. Medical doctors, (God Bless Them) should never make the mistake of thinking their patients are dumb because most are not, they are just ill.

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