For their patients’ sake, nephrologists need to become more comfortable with end-of-life care
Nephrologist Jean Holley, MD, will never forget Deena and Mary (not their real names), two patients with end-stage renal disease (ESRD) she cared for 20 years ago who asked her to let them die. Deena, a widow in her 70s, had been on hemodialysis for eight years.
Mary, who was in her late 40s and severely diabetic, needed to begin dialysis immediately to survive. Deena wanted to stop dialysis; Mary did not want to start. In both cases, refusal would almost certainly lead to death in less than a month.
Nothing in Dr. Holley’s training had taught her how to make such stark decisions, so she did what seemed appropriate in the troubling situation: weigh the pros and cons of withholding care in each patient’s case. Deena “had numerous health problems, had accomplished everything she wanted to in life, and was tired of coming to dialysis,” recalls Dr. Holley, now a professor of medicine at University of Virginia Health System in Charlottesville.
Mary had diabetes-related vision loss and already had one leg amputated. “Now she had an ulcer on the remaining leg and was going to lose that leg as well. She just didn’t want to go through it.” To complicate matters, Mary also had two adult children, and while her daughter supported her mother’s decision, her son, Dr. Holley recalls, “was devastated.”
Dr. Holley had both women evaluated by mental-health specialists to rule out depression; she also met multiple times with Mary, her adult children, and a social worker to discuss Mary’s medical condition and her options for care. Eventually, Mary’s son acceded to his mother’s wishes. Both women elected not to be treated and, in due course, both of them died. Although Dr. Holley felt she’d handled both cases as well as she possibly could, accepting her patients’ decision to die was difficult.
Many doctors feel unprepared
As a result of such difficult experiences, Dr. Holley and several of her colleagues have been studying nephrologists’ preparedness for end-of-life decision-making, with the goal of helping them cope.
According to their research, most nephrologists have trouble dealing with their patients’ deaths.
Their study, “Nephrologists’ Reported Preparedness for End-of-Life Decision-Making,” published in the November 2006 issue of the Clinical Journal of the American Society of Nephrology, found that despite playing an increasingly central role in making decisions about withholding or withdrawing dialysis, 60% of nephrologists do not feel well-prepared for this responsibility.
“Unfortunately, these discussions often occur late in illness, when patients are suffering and are
often too ill to make decisions for themselves,” says lead author Sara Davison, MD, assistant professor of medicine and bioethics at the University of Alberta in Canada. While the decision to withdraw or withhold care should never be a simple one, “if physicians feel so unprepared, patients are left to suffer,” Dr. Davison says.
One of the biggest barriers physicians face in dealing with end-of-life issues, according to Dr. Davison, is fear of causing even more suffering. Many, she says, are concerned that even broaching such subjects as death, dying, and withholding treatment will lead to despair and loss of hope. Addressing these issues, however, tends to have the opposite effect. When patients are allowed to talk openly about their fears, Dr. Davison says, they can then “align their hopes with the future. We can’t change the fact the patients are going to die, but we can meet their needs and give them dignity.”
In addition to their fear of upsetting patients, doctors feel awkward because they lack training in how to deal with end-of-life issues. Despite the increasing influence of the hospice and palliative care movements, medical schools and residency programs are only now starting to incorporate instruction in this subject.
For this reason, it is not surprising that the nephrologists’ preparedness study found that older, more experienced nephrologists—who have been down this road numerous times—have an easier time than younger ones when their patients near the end of life. But that comfort level is often hard-won. Dr. Holley, for example, says that going through the deaths of both her parents taught her important lessons.
“I’ve experienced the overwhelming barriers that exist in the medical-care system because a lot of people don’t want to talk about these issues, and as a result I have more empathy,” she says. “When you’re a patient, you’re sick, and if you’re a family member, you’re afraid, and a lack of knowledge and feelings of powerlessness can make the end of life very difficult for both.”
The study also found that familiarity with the formal guidelines for end-of-life decision-making developed by the Renal Physicians Association and the American Society of Nephrology (RPA/ASN) can help nephrologists navigate end-of-life issues. Indeed, the researchers say that nearly three fourths of the nephrologists who were comfortable with end-of-life decision-making were familiar with the guidelines, compared with just over 50% of those who were less comfortable.
The 116-page “Clinical Practice Guideline on Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis” contains nine recommendations designed to help doctors discuss end-of-life issues with their patients and their patients’ families. Among other things, the document discusses shared decision-making, how to estimate prognosis, conflict resolution, and when it is ethically appropriate to withhold or withdraw dialysis.
“Part of what nephrologists have to do is present information so patients and families can make informed decisions,” says Alvin H. Moss, MD, a professor of medicine at West Virginia University School of Medicine in Morgantown. Dr. Moss both coauthored the “Preparedness for End-of-Life” study and served on the committee that developed the guideline. Unfortunately, he says, only 50% of doctors are aware that such guidelines even exist.
Some cases are easier
Whether physicians are aware of the guideline or not, experts say that when it comes to withdrawing or withholding care, some cases are easier to call than others. For example, when a patient with profound, irreversible neurologic damage has left written advance directives, and his family members agree that he would not want to continue living, the decision to end care is fairly simple. It is when a patient’s medical situation is less grave—when death is not imminent, the patient is not cognitively impaired, and families are conflicted—that the decisions can become wrenching.
Dr. Moss recalls a patient who, despite relative good health, wanted to stop treatment at age 57. “I thought, ‘Why would this guy want to stop?’” Dr. Moss told his patient, “Let’s not make a snap decision; let’s think about it.”
Ultimately, Dr. Moss had the patient evaluated and treated for depression, and the patient changed his mind. “He thanked me for not listening to him,” Dr. Moss says. “Part of our guideline discusses how to evaluate patients who say they want to stop. Just because they want to stop treatment doesn’t always mean you should stop; you may be able to address their problem.”
More often, however, Dr. Moss encounters situations where the patient is “doing terribly; they may be comatose and ventilator-dependent, and yet the family will say, ‘Don’t stop treatment. We want you to keep going.’”
Some families simply can’t bear the thought of losing Mom or Dad, but guilt, anxiety, and financial conflicts sometimes may cause families to delay the inevitable. “Family members may be receiving the patient’s Social Security, disability, or Medicare checks, or they may be living in the patient’s house and they know that if the patient dies, they’ll have to sell it.”
In cases like this, where the interests of the patient, the family, and the nurses and doctors collide, the clinical practice guideline can be used to resolve the conflict. In other situations, when the patient is very ill but still cognitively intact, it’s of-ten best to leave things looser by letting the patient know that even if she decides to forego care now, she can reverse her decision later.
“People can change their minds as long as they’re conscious,” Dr. Holley points out. “I recently
had a dialysis patient who had the misfortune to have metastatic pancreatic cancer. She wasn’t sure what she wanted to do; she changed her mind several times before she ultimately stopped dialysis and died.”
Sometimes, a change of heart may be prompted by an upcoming event like a family graduation or the birth of a grandchild. When patients say they want to be alive to see something specific happen but aren’t sure they want ongoing treatment, doctors often suggested a time-limited trial of dialysis.
A good death
Fortunately, once dialysis patients and their families decide not to pursue further treatment, death generally comes quickly and peacefully. After stopping dialysis, most patients die in less than two weeks; 96% die within a month. Usually, they are not in pain. As toxins build up in the blood, patients spend more time sleeping, and eventually pass away. When problems with fluid overload or muscle spasms develop, they can be controlled with medication.
Finally, the researchers say, young nephrologists need more education to meet their patients’ end-of-life needs. “Dialysis patients prefer that conversations about end-of-life care happen early in the illness, and they expect their physicians to initiate and guide the discussion,” Dr. Davison says. If nephrologists are to serve their patients well, they will have to do nothing less.
Note: Copies of the RPA/ASN guideline can be ordered from the Renal Physicians Association; the guideline is $35.00 for members and $50.00 for non-members. For more information go to www.renalmd.org.