Target nursing home patients
“Because the rates of mortality and functional decline are so high in nursing home patients receiving dialysis, nursing home patients with ESRD should be targets for palliative care services regardless of whether they choose to initiate dialysis,” he said.
Like the other thought leaders interviewed for this article, Dr. Covinsky references the research of his colleague, Manjula Kurella Tamura, MD, MPH. Dr. Kurella Tamura is Assistant Professor of Nephrology at the Stanford University School of Medicine as well as a coinvestigator for the Frequent Hemodialysis Network study, a randomized trial of short-daily or long-nocturnal dialysis versus conventional thrice-weekly dialysis.
Earlier this year, Dr. Kurella Tamura led a team that analyzed patients’ preferences for dialysis withdrawal and engagement in advance care planning (Nephrol Dial Transplant. 2010;25:237-242). Her group found that preferences for dialysis withdrawal varied by race and ethnicity, with black patients less likely than whites to opt for withdrawal.
Older age was not associated with withdrawal preferences, but the pattern of engagement in advance care planning varied by age as well as race and ethnicity. (Younger participants and minorities were generally less likely to document treatment preferences than older patients and white patients, but were equally likely to engage in end-of-life discussions.)
Advance planning is crucial
In a 2009 study on the functional status of elderly adults before and after dialysis initiation, Dr. Kurella Tamura, Dr. Covinsky, and other investigators used a national registry to identify 3,702 U.S. nursing home residents who began dialysis between June 1998 and October 2000 and who had at least one available pre-dialysis measure of functional status. They found that in nursing home residents with ESRD, dialysis initiation was associated with “a substantial and sustained decline” in functional status (N Engl J Med. 2009;361:1539-1547).
“I think the area of palliative care is one of several issues the nephrology community needs to address in order to better serve the needs of our aging and increasingly frail population,” Dr. Kurella Tamura said. “Ideally, advance care planning should take place before starting dialysis, and these discussions should be continued after evaluating the response to dialysis.”
In Dr. Kurella Tamura’s opinion, palliative ESRD care (a term she prefers to “palliative dialysis”) should be considered when an ESRD patient has a very high symptom burden and a limited life expectancy despite the provision of dialysis—for example, less than three months.
In addition, she stated that symptom management should be a priority for all patients—whether or not they are receiving palliative ESRD care—and more attention should be focused on preserving independence. “Some might not consider these areas to be the domain of the nephrologist or the dialysis unit, but because we have regular contact with ESRD patients, we are well-placed to implement these measures. Perhaps implementing a geriatric allied health professional into the dialysis unit, in the same way as the unit dietitian, may be a useful way to address these issues regardless of their goals of care.”
Integrating palliative care
For the most part, Dr. Kurella Tamura said, there appears to be no coordination at the national level to address the integration of palliative care into the typical dialysis setting other than the upcoming guidelines from Dr. Moss’s group.
What steps, then, does Dr. Moss recommend that an individual dialysis unit take to better integrate palliative care into its offerings? “What they can do is a very complicated process—it’s called talking to one another!” Dr. Moss remarked. “It’s called communication, and advance care planning, and explaining to patients and families that they need to talk about these issues and put their wishes in writing.”
As Dr. Moss pointed out, the re-vamped conditions for ESRD coverage issued by CMS in 2008 require that dialysis units have a policy on advance directives. “If patients are adequately informed about their options and how sick they are, they can make informed choices that will lead to less pain and suffering and more death with dignity in a setting of their choice as opposed to the ICU,” he said. “I think that very slowly, physicians, nurses, and social workers are beginning to understand that perhaps our default in our health-care system—which is the patient dying in the ICU on a breathing machine, restrained so they don’t pull out their tubes—is probably not the most humane way to go.”
Tough sell to the public
Nevertheless the trend toward backing off dialysis as an automatic course of treatment could be a tough sell to the public, which could feel shortchanged. “Patients and their families might think that dialysis is their right, but they might be demanding unrealistic care that’s not likely to benefit them,” Dr. Germain said. “They have to understand that our job is to do what’s best for them, and that doesn’t always mean providing the most aggressive, expensive care.”
Nephrologists themselves may be an equally tricky audience to win over, as their focus has traditionally been on prolonging life and helping patients avoid death at all costs. “I can tell you that the leadership in nephrology and large dialysis organizations already agree with the viewpoint [of pursuing more palliative services for ESRD patients],” Dr. Moss said, “but I think it’s going to take a while for nephrol-ogists throughout the country to subscribe to the concept. It’s not the way we’re used to doing things.”
One barrier, Dr. Germain noted, is that physicians may not feel comfortable discussing palliative and hospice care if they don’t feel they have a good handle on a patient’s prognosis. To that end, he and Drs. Moss and Cohen (along with biostatistician Robin Ruthazer, MPH) once again teamed up, this time to develop a “mortality tool”—an instrument that enhances the accuracy of predicting six-month survival for a person on maintenance hemodialysis (Clin J Am Soc Nephrol. 2010;5:72-79).
Nephrologist training needed
Even if a nephrologist is confident that dialysis is more likely to interfere with a terminal patient’s quality of life than improve it, he or she simply may not feel comfortable discussing end-of-life care with the patient and/or family. “That’s where we need to improve training and education of the doctors, so they’re more comfortable having these discussions,” Dr. Germain said. “Unfortunately, it’s not really happening anywhere routinely at the present time.”
As a medical student at the University of Calgary in Alberta, Canada, Dr. Germain saw patients and communicated with families as part of the curriculum “from day 1,” but that is usually not the case in the States. “For a lot of medical schools, you do your basic science work for two or three years, and then you see patients,” Dr. Germain said. “But [learning to interact with patients and families] really needs to start from the beginning of medical school, and carry on in residency and then through fellowship.”
Dr. Cohen recalled that when he and Dr. Germain began studying palliative renal care, they hoped nephrologists could be easily trained in these techniques. Now, however, “we have come to appreciate that while [palliative-care education] should be incorporated into fellowship programs, most practicing nephrologists are already saturated with their existing skills and responsibilities. The idea of them, for example, participating in a week-long course to communicate better with patients and families on end-of-life issues is simply not practical.”
Strategies for improvement
Instead, Dr. Cohen said, one of the best courses of action would be to invite local palliative-medicine and hospice resources to participate in dialysis care. “One of our recent research efforts entailed encouraging staff from both the local hospices and the dialysis clinics to become better acquainted with each other,” he said. “We were able to demonstrate a significant increase in dying ESRD patients receiving hospice services, especially among the elderly, following this simple process.”
In addition, Dr. Cohen recommended providing more training to the interdisciplinary team that already exists in the dialysis unit. For example, nephrologists and dialysis social workers can work together to improve communications with patients, their families, other health-care personnel, and representatives from relevant community resources.
The lack of formal education in palliative care for nephrology trainees is just one obstacle to the integration of palliative services into a dialysis unit. Inadequate funding for palliative-care research, poorly aligned financial incentives, and lack of access to palliative-care specialists in some regions are all significant barriers as well. But the picture is far from dismal.
“I can tell you we are making progress,” Dr. Moss said, pointing to a recent jump in hospice referral rates for dialysis patients as proof.
“When patients with end-stage renal disease stop dialysis, they usually die in about eight days,” he explained. “So you’d think that these people would be perfect candidates to be referred to hospice, but we found that according to the USRDS [United States Renal Data System] data on dialysis patients who had died in 2001 and 2002, only 41% of those who stopped dialysis were being referred to hospice.”
At the time of that analysis, Dr. Moss was chairing a Robert Wood Johnson Foundation working group that was looking at end-of-life care for dialysis patients. “So one of the recommendations we made was that CMS should track hospice referral for dying dialysis patients,” he re- counted. “And in October 2004, CMS revised its death notification form—which must be completed by dialysis unit personnel and submitted to the End-Stage Renal Disease Networks whenever a patient dies—so that it now asked whether the person had been referred to hospice prior to death. This serves as a sort of reminder to the dialysis unit staff [that], ‘Hey, maybe we should be referring patients to hospice if CMS is asking about it.'”
Now, Dr. Moss said, 60% of patients stopping dialysis are being referred to hospice, according to 2008 USRDS data. However, further research by various ESRD networks indicates some gaps in knowledge among social workers, nurses, and nursing directors in dialysis units. “There is clearly a need for more education to be done,” Dr. Moss said.
Among other nationwide efforts aimed to educate the nephrology and hospice communities about palliative care for dialysis patients, Dr. Moss, Dr. Germain, and others are presenting a “webinar” series on behalf of the Kidney End-of-Life Coalition (www.kidneyeol.org). The coalition has also recently posted on its Web site an algorithm for pain management of dialysis patients.
Marked progress foreseen
All in all, Dr. Moss expects that in the next five years or so, marked progress will be made in the incorporation of palliative renal services. This is due, in large part, to grow- ing public awareness of end-of- life issues, the pending completion of the RPA working group’s newly revised clinical practice guideline, and the increasing number of nephrology fellowship programs that are incorporating palliative-care training into their agenda.
“It may take a few more years, but I’m optimistic,” he said. “We are not used to considering palliative services in renal care, and it takes a little bit of time to turn the direction on an aircraft carrier.” n