End-stage kidney disease patients on dialysis need to continue dialysis to stay alive. To reduce the pain and common worries in their final phase of life, they also need access to hospice care. Unfortunately, Medicare patients with end-stage kidney disease often can’t have both.

Medicare will pay for hospice for patients with a range of conditions, from cancer to end-stage kidney disease, who have a prognosis of less than six months. However, these patients must also forego or discontinue disease-modifying therapy. As a result of the latter criterion, in order to receive hospice care, most patients with end-stage kidney disease must first stop dialysis treatment—a decision that leads to death within days.

In a study published in JAMA Internal Medicine, researchers at Brigham and Women’s Hospital reported that only 20 percent of Medicare patients with end-stage kidney disease who died used hospice. Furthermore, those who did use hospice were almost twice as likely to have very short stays as those who did not use hospice, with 42 percent enrolled for three days or less, and a median length of stay of five days. In comparison, national statistics have shown that 50 percent of Medicare patients with other end-stage diseases use hospice and have a median hospice stay of 23 days and an average of 70 days.

This is one of the few studies (and the first in over 10 years) to investigate the Medicare hospice benefit and its implications for end-stage kidney disease patients.

“Patients with end-stage kidney disease have a very high symptom and pain burden, undergo intensive, often invasive, treatments and have a low quality of life,” said the Brigham’s Melissa Wachterman, MD, MSc, MPH, lead author of the study. “While palliative care can address many of their needs, it can’t offer the access to round-the-clock nursing support and the bereavement services that hospice can.”

Wachterman added that the relatively short hospice stays for Medicare patients with end-stage kidney disease create another dilemma: They make it very difficult for patients and families to fully benefit from the expertise in symptom management and emotional support hospice can provide, usually in the patient’s home, where the majority of Americans want to die.

Although end-stage kidney disease patients who receive hospice are less likely to die in the hospital than those who don’t use hospice, their short hospice stays do not translate into lower health care utilization and costs. According to the study, costs for dialysis patients with very short hospice stays were similar to or higher than those not receiving hospice care. Stays in hospice that went beyond three days, on the other hand, were associated with progressively lower rates of health care utilization and costs.

The study reflects the Brigham’s commitment to improving the quality of care for patients with serious illnesses, offered Wachterman. She said that end-stage kidney disease represents an important area of emphasis, adding that the Brigham has dedicated specific resources to address the needs of this patient population.

For example, a new program called Kidney-Pal focuses on patients with advanced kidney disease and provides palliative care co-management from a palliative care physician, nurse practitioner and social worker alongside the primary renal team. The goal of Kidney-Pal is to improve quality of life, help keep patients out of the hospital and clarify their care goals.

Continuity of care can suffer when patients at institutions like the Brigham are primarily treated at outlying, unaffiliated dialysis units, as is common for dialysis patients. Removing the policy barrier to hospice would help these institutions provide the evidence-based care patients require. Wachterman hopes her study will inform this effort.

“More timely hospice referral for dialysis patients would help us achieve the triple aim of health care: improved patient experience of care, including quality and satisfaction, improved population health and reduced per capita health care costs,” Wachterman said. “As health care professionals, we have a responsibility to think beyond clinical care and to advocate from a health system perspective for the patients we see every day.”

“We hope our work will spark discussions about potential changes to Medicare policy to better serve the needs of the ever-growing population with end-stage kidney disease.”