Dealing with family

One of Dr. Moss’ patients had ESRD, circulatory problems, was a heavy smoker, and had lung disease. When she found out she needed dialysis, she did not want to begin treatment. Her daughters begged her to and she relented.

For the first 2 months, she did well, but then quickly went downhill. She came to Dr. Moss and told him she wanted to quit. To help her, he had a series of meetings with the patient and her daughters so they could understand the situation. After a couple of months, she ended treatment and her daughters understood her decision.

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Kelli Collins, the national kidney patient services director for the National Kidney Foundation, said many of the calls they receive requesting information on dialysis options are from patients’ family members.

“We get quite a few calls from families who are having a hard time understanding why their loved one doesn’t want to start or wants to stop dialysis,” she said. “Some people want to know if it’s possible to make them stay on it.”

Family members often think the person is giving up and they are resistant to lose him or her, Collins said. Her organization helps patients talk with family members and make educated decisions.

“You have better outcomes when you have the support of the family,” she said. “The family might not be happy with it, but they can come around and let the person die with dignity and on their own terms.”

It was in the late 1990s that nephrology leadership decided that one of the most pressing issues in the specialty was the appropriate initiation and discontinuation of dialysis. Dr. Moss was the editor of the first edition of the guideline addressing this issue, Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, published in 2000.

In 2010, the guide was updated because research showed that older patients with comorbidities are likely to do poorly on dialysis and that dialysis does not necessarily extend their lives.

A wealth of research bears this out. A study published in the New England Journal of Medicine (2009;261:1539-1547) looked at 3,702 patients in nursing homes on dialysis. One year after starting dialysis, 58% had died and only 13% had maintained the same functional status during the period.

Researchers from Johns Hopkins Hospital in Baltimore followed a group of 146 elderly patients through hemodialysis. Half of the patients aged 65 years and older were considered frail and 35% of the patients younger than 65 years were frail. The 3-year mortality rate for frail patients was 40% versus 16% for non-frail patients. The frail patients also had much higher hospitalization rates.

According to the guideline Dr. Moss edited, the following patients are those for whom dialysis should be withheld or withdrawn: patients who refuse treatment; patients without full decision-making capacity who indicated in written or oral form or through a guardian that they do not want dialysis; and patients without awareness of their selves and environment.

Other categories for whom strong consideration should be given to not starting or stopping dialysis include patients who are unable to cooperate (for instance, one with dementia who pulls out the dialysis needles); those with terminal illnesses other than ESRD; and patients older than 75 years with stage 5 chronic kidney disease who are also significantly impaired from multiple comorbid conditions and/or severe chronic malnutrition.

Dr. Moss said a nephrologist can ask the “surprise” question for much of this population—“Would I be surprised if this patient died in the next year?” If not, patients should be informed that dialysis may not increase their survival advantage and the burdens may only serve to reduce quality of life.

Doing nothing may be best

One patient Dr. Germain remembers well is a man in his 80s who fit criteria for poor dialysis outcomes. Dr. Germain talked with him and the patient decided to do a trial run of dialysis. He underwent treatment for 3 years without any major events. One day, when Dr. Germain was doing rounds, the patient told him that he remembered their conversation, and it was time to stop.

The man’s wife was surprised, but respected his wishes. The patient was moved to a bed in the front room of his house and hospice was called in. Dr. Germain visited him one day and the men were talking about World War II. Dr. Germain held his hand while he rested and he felt it go limp.

“I turned to his wife and daughter and told them he was gone,” he said. “It was a very touching moment.”

Dr. Solomon said the decision to stop dialysis needs to be normalized by providing patients “permission” to end treatment. Dialysis should be framed as a trial instead of never-ending maintenance.

“Things start off on a very positive note about all of the good that this is going to do for you,” Dr. Cohen said. “It is difficult to slip in the beginning that they don’t have to do this and they aren’t going to get eternal life as a result of it.”

Daniel P. Sulmasy, MD, PhD, professor of medicine and ethics at the University of Chicago, said this concept is merely relearning is merely relearning the teachings of Hippocrates who counseled that when a patient a patient is overridden with disease, it may be time to understand that medicine can be powerless.

“When I was chief resident, my chief of medicine used to say, ‘Don’t just do something, Dan, stand there,’” he said. “It is always hard for physicians who are trained to help, to sit back and not do something.”

Tools are available to help nephrologists gauge which patients might not do as well on dialysis. Touchcalc is a tool available online ( and as an app. The calculator asks a set of questions and prognosticates patient mortality on dialysis after 6 months, 1 year, and 18 months. Dr. Moss said the calculator can predict with about 85% accuracy how the patient will fare on treatment.

Not the death of dialysis

Dr. Moss had a patient on dialysis who came to him saying she was too sick, had no quality of life and had suffered enough. She was ready to end treatment.

She had heart and lung disease, lived alone, and rarely saw her only son. Dr. Moss sympathized with her, and told her he understood her situation.

He was surprised when she became furious with him, asking why he did not try to talk her out of stopping treatment. She was just reaching out for help. Dr. Moss called her son and told him what had happened and that she needed time with him. After that, the patient smiled more and was content. She spent time with her son and lived another 9 months before having a major stroke.

“Before ending treatment, doctors have to make sure there isn’t something they can do to help,” he said. “She just wanted a better relationship with her son.”

Dr. Moss contends that taking more patients off of dialysis and recommending fewer initiate it will not be the death of the treatment.

“For most people, if you say, ‘This may or may not extend your life,’ they are going to hear the ‘may,’” he said. “I still think the vast majority of patients will start, but they will have a better understanding of the issues.”

Dr, Moss said it will give them the permission they may need to end dialysis if they decide their quality of life isn’t what they expected. Others may choose home dialysis and still others may remain on treatment if conversations with physicians make them more aware of ways to alleviate side effects.

“It will be good for dialysis patients overall,” Dr. Moss said. “Dialysis has a bright future as it becomes more patient-centered.”