Palliative Care Initiatives
End-stage renal disease patients need hospice care
Health providers need more education
Renal disease patients live only one-third as long as persons who do not have kidney disease, and they typically have many co-morbidities, including diabetes, heart failure, high blood pressure, and circulatory problems. About 20 percent of dialysis patients withdraw from dialysis treatment, which typically results in their dying within four weeks.
So the big question is why doesn't this very sick population receive high quality palliative and hospice care as often as needed?
The Robert Wood Johnson Foundation of Princeton, NJ, funded a renal disease workgroup to look at palliative care issues as a recognition of the reality that too few renal disease patients were receiving palliative services, says Alvin H. Moss, MD, a professor of medicine at the West Virginia University School of Medicine in Morgantown, WV.
The workgroup consisted of people who cared about dialysis patients and wanted to improve their care, particularly at the end of life, Moss notes.
"Most of us were seasoned clinicians, doing this work for 15 to 20 years and longer, and we were burdened by the amount of suffering we saw in patients we care for," Moss says. "We wanted to figure out how we could provide better care to them."
Workgroup members quickly identified hospice care as being underutilized for dialysis patients, Moss says.
"You think of cancer patients as a sick patient population," Moss says. "Dialysis patients on average live only half as long as cancer patients, with 70 percent of cancer patients living five years, and only 35 percent of dialysis patients living five years."
Also, when dialysis patients stop treatment, 96 percent of them will die within the month, so hospice care is appropriate for these patients, he says.
"Every renal patient who stops dialysis should be offered hospice care, and most would use it," Moss says. "Yet, only 40 percent of dialysis patients who stop treatment receive hospice care."
One of the renal disease workgroups recommendations to the field of nephrology health care professionals was that they more consistently refer dying dialysis patients to hospice care or that they adopt a palliative care approach to their management, Moss says.
The workgroup also recommended that the Centers for Medicare and Medicaid Services (CMS) collect data on hospice utilization on their death information form, Moss says.
"In October, 2004, CMS changed the death notification form based on the recommendations," Moss says. "So CMS now collects data about hospice use on every dialysis patient who dies, and its data that will be readily available."
The main obstacle to getting end-stage renal disease patients into hospice care is that Medicare won't pay for two different programs for the same diagnosis, Moss says.
"They won't pay for hospice and also pay for dialysis for kidney disease, so most providers think dialysis patients can't have hospice services," Moss explains. "But one of the things we did was identify precisely what the CMS regulations were, and we found that renal disease patients who are dying from cancer and heart failure can continue to receive dialysis, as well as receive the Medicare hospice benefit."
Hospice professionals traditionally have thought of dialysis as a life-saving treatment, when it's not life-saving, but can add a little time and quality to a patient's life, says Malene Davis, MBA, MSN, RN, CHPN, president and chief executive office of Capital Hospice of Falls Church, VA. Davis also is the chairperson-elect of the National Hospice and Palliative Care Organization of Alexandria, VA.
"So one of the understandings of hospice is that we're not permitted to pick up a patient who is on dialysis," Davis says. "So what we would do is wait for people to stop dialysis, and then we would have them in care for only two or three weeks before they died."
The reality is that most dialysis patients also have diabetes or cardiac problems or another chronic illness that makes their case more in line with a hospice philosophy, Davis adds.
"In West Virginia, we had a patient who had cancer, but started to develop renal failure while on the hospice program," Davis says. "Then the patient went on dialysis to improve her quality of life and enable her to stay at home and eat better."
One day, Davis visited the woman and found her watching "The Price is Right," and then her grandson called her.
"I asked her if she liked to go to the dialysis center, and she said, 'No, there will be a day when I won't want to go back there,'" Davis recalls. "But it was buying her time to spend with her grandson and his children — so it's all about quality."
A minority of dialysis patients have only renal disease, Moss says. This is why education is so crucial to improving dialysis patients' access to hospice care, Moss says.
The Kidney End-of-Life Coalition, along with hospice and other partners' work to educate the medical community about how they should not discriminate against dialysis patients, Moss says.
In studies that will soon be published, a survey shows that health providers who are aware of the renal disease workgroup's recommendations and work are well prepared to provide palliative and end-of-life care to their patients, Moss says.
"One thing we worked on was developing core curriculum for nephrology products, and that was done and published, and it's now out there for educating people who are training to be nephrologists," Moss says. "About 39 percent of nephrologists now say they are well prepared to do end-of-life care, so it's still a minority, but the number is increasing."
From the hospice perspective, data show that the average hospice patient has eight or nine symptoms that are out of control, and end-stage renal disease patients have the same number, Davis says.
So it is unethical for the health care field to send these patients home from the dialysis center with no support, she says.
"We have to step up to the plate, go to dialysis centers and do a presentation for their staff," Davis suggests.
One of the first things hospice professionals can teach dialysis center staff is about advanced care planning and advanced directives, she says.
Members of the renal disease workgroup discovered in their research that dialysis units did not have a consistent policy about whether they would honor patients' wishes regarding CPR in the event of a cardiac arrest, Moss says.
"So we conducted focus groups with dialysis patients and their families," Moss says. "We talked with them to find out what their concerns, needs, and level of understanding were." The group developed a draft policy based on these discussions, he adds.
"Dialysis centers don't have time for social work, so it's up to hospices to provide a community service by visiting dialysis centers," Davis says.
When Davis speaks with dialysis center staff, she typically asks them if they can predict which patients will choose to go off of dialysis, and they say they can.
"They call these patients the 'dwindlers,' because they are people who still are coming in for dialysis, but their blood pressure is not staying up, and it's just wearing them out," Davis explains. "These are the patients who need to be helped with their decision and, if hospice were involved, they could be educated and more comfortable about making a decision to stop dialysis."
Hospices that develop good relationships with dialysis centers could assist the centers in providing patients with palliative care services, as well as increase their referrals, Davis says.
Need More Information?
- Malene Davis, MBA, MSN, RN, CHPN, President and CEO, Capital Hospice, 6565 Arlington Blvd., Suite 501, Falls Church, VA 22042. Phone: (703) 531-6201. E-mail: [email protected].
- Kidney End-of-Life Coalition, 1527 Huguenot Road, Midlothian, VA 23113. Telephone: (804) 794-3757. Email: [email protected]; Web site: www.kidneyeol.org
- Alvin H. Moss, MD, Professor of Medicine, West Virginia University School of Medicine, P.O. Box 9022, Morgantown, WV 26505-9022. Telephone: (304) 293-7618. Email: [email protected]
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