Kidney Experts Address End-of-Life Care

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Advanced care planning and end-of-life discussions are never easy, but for nephrologists they are a necessary part of caring for ESRD patients. As the general population ages and the incidence of CKD continues to climb, more researchers and clinicians are reassessing the role of palliative care in ESRD.

Jean Holley of the University of Illinois at Urbana-Champagne College of Medicine offered practical suggestions for having advanced care planning discussions in her talk “Creating an Efffective Advanced Care Plan for End Stage Renal Disease Patients” at Renal Week 2010 in Denver.

“A contemporary view of advanced care planning can be seen as preparing patients and surrogates to participate with clinicians to make the best possible in-the-moment decisions,” she said.

She suggested starting with the patient’s values and priorities—does the patient prefer prolonging life or a higher quality of life? Begin the discussion by talking about proxies: If you are unable to speak for yourself in the future, who will best represent your views and values? Have you given any thought to what kinds of treatment you would want or not want if you become unable to speak for yourself?

Surveys show that most patients believe that physicians should be the one to bring up these topics, but patients then prefer to have discussions about the topics with their families. As to when a physician should initiate these conversations, she pointed to the useful “surprise question” as in, “Would you be surprised if this patient died within the next six to 12 months?”

A useful opener for an end-of-life conversation is to talk in terms of goals: Given the severity of your condition, what is important for you to achieve? What are your greatest fears? Greatest hopes? Is it more important for you to live as long as possible, despite some suffering, or to have the best quality of life with little or no pain? What makes life worth living for you right now? Have you seen someone have a particularly good death or a particularly bad death?

Noting that one study showed physicians interrupt patients after an average of 18 seconds, Holley urged physicians to take the time to listen to patient concerns and wishes. She showed a slide of a typical ESRD patient trajectory—patients experience a slow decline in health over time that is interrupted by dips, or sentinel events, which return to a lower baseline. These sentinel events, she said, often result in a hospitalization and a change in health status, which makes each episode an appropriate time to talk about and revisit advanced care planning.

The successful use of physician-order advance directives such as a Do Not Resuscitate (DNR) or a Physician Order for Life-Sustaining Treatment (POLST) can benefit from educating patients about the realities of CPR survival rates and other interventions.

“On television, 75 percent of patients survive CPR, and usually by the end of the episode,” Holley quipped. “And of those, 67 percent survive to hospital discharge.” In the real world, on the other hand, only 30–40 percent of patients survive CPR and only 15 percent to discharge. In addition, CPR in this patient population carries risks of undesirable outcomes such as prolonged ventilation, fractures, pneumonia, and neurological damage.

Holley suggested openers for DNR conversations, too, such as: “If you suddenly stopped breathing or your heart stopped, we could try to revive you by CPR. Are you familiar with CPR? Have you given thought to if you would want it?” Or, “Given the severity of your illness, CPR would likely not be effective, so I would recommend that you not choose it. But, how do you feel about it?”

The POLST document, usually a brightly colored page in a patient’s chart, converts patient preferences into medical orders signed by a physician. It is available, or will be soon, in several states. It usually includes a CPR designation, comfort measures, limits to interventions, whether antibiotics should be given, and whether tube feeding or fluid nourishment should be given. It may also have timing attached to certain measures to accommodate a major life event for the patient such as attending a daughter’s marriage.

Stopping dialysis

Lewis Cohen, director of the Baystate Renal Palliative Care Initiative and psychiatrist at Tufts University School of Medicine in Springfield, Mass., spoke about the tricky issue of stopping dialysis. He noted that in the New England region, currently more than 40 percent of deaths of ESRD patients result from stopping dialysis.

In 2000, his group initiated a prospective study to find out who these patients were, their reasons for stopping dialysis, and what kind of death they had. Families reported 85 percent of the deaths as “satisfactory,” but pain was present in 42 percent of deaths and agitation in 30 percent during the final day of life. Death occurred an average of eight days after the last dialysis treatment.

Forty-seven percent of these patients experienced a good death, defined as one that occurred within eight days of stopping treatment, was painless, in the company of loved ones, peaceful, asleep, at home, and with the patient mentally alert. Only 15 percent experienced a bad death.

“It’s time for us to sharpen up the prognostic tools and focus on those doing poorly and likely to die in the next six months. How do they want to make use of that time?” asked Cohen. “Patients need to know that stopping dialysis does not mean the end of further care. It’s not about dying, but about the living that comes beforehand.”

Holley, Cohen, and other speakers in the Renal Week session “Palliatiative Care in ESRD” encouraged nephrologists at dialysis centers to determine who within their staff, such as social workers and nurses, would be best equipped to help facilitate these discussions. But one doctor in the audience had the final word: “It’s not just the social worker’s job or the nurse’s job, it’s our job [to talk about death]. If you are a nephrologist, you got here because you’ve seen patients sick and dying. Death is part of what we do.”

At the end of Lewis Cohen’s talk, audience members had several questions about handling tricky situations that crop up in their daily practice or within their own dialysis centers—usually revolving around stopping or not initiating dialysis and the end of life. Cohen offered his perspective on these scenarios.

Q: You said you felt that it was not a good death if it occurred more than eight days after removal of dialysis, but we all know of cases where patients have some residual renal function and continue to live for even up to a year longer. How do we deal with that?

A: We all know the story of Art Buchwald, the Pulitzer Prize winner who was very vocal about what happened when he was taken off dialysis. It was the time of his life, until he got thrown out of hospice because he didn’t die. At the same time, I recall a family in California who wrote to me about the agony of the prolonged period their loved one was going through that stretched into months. These are working attempts to come up with a quality of dying measure, but the field is having a tough time finding one that works across the board. We should continue to figure it out.

Q: Say you have a young patient on the transplant list who asks you, “Is stopping dialysis committing suicide?” How do you answer that?

A: I stand here as a psychiatrist and that’s the very question that got me interested in this subject. It can, for some people, be the same thing and so I’m always careful to look for someone with a past history of suicide attempts or depression. But for all the rest, the vast majority of folk, it’s a different kettle of fish that is something very different from suicide.

Most Western religions have looked at the matter and determined that stopping extraordinary measures are not sins of suicide. So you can dispel concerns of someone bothered by that thought, and I have involved the hospital chaplains in those conversations.

Q: Sometimes the family is pushing hard for dialysis, but the patient doesn’t want to. How do you deal with that?

A: When the patient and family are not on the same page—usually a loving family saying we don’t want you to die—the ethics at the moment is pretty clear. It’s not the family’s decision to make if the patient can make it on their own. It’s a cultural thing as well. In this country, the individual has the right to make decisions for themselves. They are the one suffering and they have both the ethical and legal right to say they want to stop treatment.

What’s a strategy for helping the family and patient get on the same page? You can tap a social worker to join the conversation. Also, very few family members actually sit in dialysis centers and see what the person is experiencing. [If they did,] they might understand better.

Q: Could you talk about the memorial service performed at [your center] Baystate, and what good has come from it?

A: This is something we’ve been doing for a number of years and it’s worth considering bringing to your dialysis centers. We send out invitations to the bereaved families of people who have died within the last year for an ecumenical service of remembrance. Families get the opportunity to say thank you to those who’ve cared for their loved ones over the years and the staff get to hear about how the person actually died.

Again, it’s about changing the culture. All the staff that come are affected by this. During the candle lighting ceremony, you see that, wow, there are 50 candles here and that changes the staff and how they practice. The atmosphere is much more conducive to having these [end-of-life] discussions with patients and families.

Symptom Management Near the End of Life

Drew Rosielle keeps the memory of a patient from his training days in his mind when thinking about end-of-life (EOL) palliative care. The 69-year-old woman with type 2 diabetes and ESRD on dialysis developed a painful rash called calciphylaxis.

“She spent the last two weeks of her life in the hospital, twitching and writhing with a pain score of 8–10 and we as her physicians worried constantly about overdosing her on pain medications,” said Rosielle, a palliative care physician at the University of Minnesota Medical Center Fairview in Minneapolis. “It was a big example to me of the suffering our patients go through and our feelings of being helpless.”

Luckily, the good news is that ESRD patients at the EOL can get tremendous relief now for their physical symptoms. Rosielle noted that while there is some evidence that guides first-choice agents to use, his usual mode of operation when treating someone near the EOL is to “try something to see if it works, and move on to the next thing in a very rapid, careful management.”

For acute symptoms, he recommends using rapid-acting formulations like IV and subcutaneous injections or oral doses, not IV drips that take hours to take effect. For opioid pain relief, Rosielle recommends using fentanyl and methadone (see box at right) for ESRD patients, either with or without dialysis. He says patient and provider concerns or hopes that using opioids will hasten death are misguided because there is no evidence to support this. “Instead, just tell them it will only make them more comfortable,” Rosielle said.

He also notes that families concerned about delirium and the patient not eating or drinking can be reassured that this is a normal part of the process of dying and to be expected.

Although only a few percent of patients have intractable suffering, characterized as pain, nausea, dyspnea, and agitation that does not respond to usual drug therapy, those patients can benefit from sedation with benzodiazepines at the EOL. The worse cases may need continuous deep sedation (medically induced coma) but this should be performed by a palliative specialist familiar with the procedure. If intractable suffering is a major patient worry, you can reassure them that there are options for relief.

Rosielle’s session was titled “Maximizing Quality of Life: Symptom Management near the End of Life.”