First used in the 1940s, dialysis was intended to be a lifesaving treatment. Focused on young patients with acute renal failure, it helped them until their kidneys were strong enough to function without the therapy. But times have changed.
The average patient undergoing treatment is aged 65 years. Dialysis is now used as a maintenance treatment as frequently as for acute episodes, but a shift has occurred in the manner and frequency with which it is offered to different patient populations.
“Many of these patients don’t realize they are in the final phase of life because no one has talked forthrightly with them,” said Mildred Z. Solomon, EdD, president of The Hastings Center, an independent, New York-based bioethics research institute. “Many people are being put on dialysis as a rite of passage before they die.”
There is a simmering movement by physicians and ethicists who are concerned with the role dialysis has played near the end of life. It is time, they say, to begin having difficult discussions, including advising patients about the likely trajectory of their illness and their prognosis, as well as discussing whether dialysis is something they want to start and letting them know it can be stopped.
Offer a choice
The trajectories of end-stage renal disease (ESRD) and cancer are similar. With certain other conditions, such as chronic obstructive pulmonary disease, patients experience a wave of alternating exacerbations and stabilization. With ESRD and cancer, terminal patients follow a horizontal line and then drop off of a cliff.
One difference between cancer and ESRD, though, is the numbers of patients receiving palliative care. Nationally, 37% of patients admitted to hospice for palliative care services in 2011 had a cancer diagnosis. That same year, only 2.7% were admitted for kidney failure, according to the report, Hospice Care in America, by the National Hospice and Palliative Care Organization.
“We haven’t had a grown-up conversation that this is a stage of life patients are in and death may not be that far away,” Dr. Solomon said. “People want to have that sort of conversation and are expecting it from their doctors, but physicians aren’t initiating it.”
Studies have borne this out. A meta-analysis published in the Journal of General Internal Medicine (2013;28:1511-1516) found that many patients with ESRD reported they did not know their prognosis and did not recall being offered alternatives to dialysis.
Patients reported feeling rushed and pressured into treatment. A study published in the Clinical Journal of the American Society of Nephrology (2010;5:195-204) found that fewer than 10% of the 584 patients presenting for dialysis, transplantation, or predialysis clinics had a discussion about end-of-life care issues with their nephrologist.
According to a report in Medical Anthropology Quarterly (2005;24:297-324), researchers who spoke with patients at two Californian dialysis clinics found that only 4 said they initiated dialysis treatments by choice.
“Research shows that people don’t make a decision to go on or get off dialysis,” Dr. Solomon said. “It’s more like they are on a conveyer belt.”
Nephrologists have to learn to have “the conversation”—a discussion about how patients want to end their lives—said Lewis Cohen, MD, professor of psychology at Tufts School of Medicine in Boston. “Everything we know about patients suggests that most of them want to have the conversation,” Dr. Cohen said. “And patients want doctors to be the ones to broach the subject.”
Nephrologists need to be able to tell patients that they are, unfortunately, near the end of their lives, he said. The good news is that they do not have to do it alone. Nephrologists can pull from their team, social workers, hospice, and palliative care specialists to help initiate and continue the discussion.
Dr. Cohen recommends talking about the preferences patients have for end of life, what kind of medical care they want, what their goals are, and who should speak for them if they are unable to communicate.
The first thing nephrologists need to ascertain is if the patient is willing to hear about their options. The best way to do that is to ask. Dr. Cohen recommends telling them they are facing a life-limiting situation, and then asking if they feel comfortable talking about it or having family present during the discussion.
Next, work from what the person knows about their situation. More often than not, Dr. Cohen said, patients know they are on the downward slope and are facing death. They often feel relief to get the issue out in the open so it can be dealt with.
Three main points should be included in this conversation. One is to provide as much information to patients as possible, including the downsides of treatment. The second is a patient-specific estimate of prognosis. The third is the patient’s specific goals for treatment.
For instance, a patient with ESRD and cancer may want to forgo dialysis because it will prolong pain and suffering. Another patient with the same conditions may have a granddaughter getting married in 6 months and they want to see the wedding.
“You need to explore with them and see what their thoughts are,” said Michael J. Germain, MD, a transplant nephrologist at Baystate Medical Center in Springfield, Mass. “Often they want to know what you think and that is something that is often missing … we give them choices, but don’t give recommendations.”
Patients will be the expert in their values and goals and the nephrologist is the expert in the prognosis and treatment options. Both of these things should be considered as part of the process.
Patients should hear about their options, including available dialysis treatments and transplantation; not initiating dialysis but continue to receive medical management; a time-limited dialysis trial; and stopping dialysis and receiving end-of-life care.
Alvin H. Moss, MD, a nephrologist and professor of medicine at West Virginia University School of Medicine, stresses an “ask, tell, ask” approach during the conversation. Ask what the patient understands about the condition, impart missing information, and ask again what the patient has understood about the discussion and any questions that remain.