Among patients with advanced chronic kidney disease, receiving end-of-life care focused on life extension rather than comfort was linked with lower family satisfaction with care, according to new research led by the U.S. Department of Veterans Affairs (VA) and the University of Washington. The study was published Aug. 29 in the Clinical Journal of American Society of Nephrology. 

Patients who received intensive patterns of end-of-life care, which required more time in the hospital and included exhaustive procedures such as CPR and mechanical ventilation, were associated with up to 5 percent lower overall family ratings of care. Family members of patients who received hospice services, a model of care focusing on relief from the symptoms and stress of illness, had 13 percent more favorable ratings.

These findings raise concern that the intensive care received by patients with advanced chronic kidney disease reflect low quality care, according to lead author Claire Richards, a post-doctoral research fellow at the VA Puget Sound Health Care System and the UW School of Public Health’s Department of Health Services. 

“Prior studies have shown that most of these patients prefer a comfort-oriented approach to end-of-life care,” Richards said. “We might be able to promote higher quality end-of-life care for this population, such as by strengthening nephrologists’ comfort with prognostic communication and offering more opportunities to patients and their families to discuss their values and goals of care.”

Previous studies have also shown that despite their limited life expectancy and high symptom burden, patients with advanced kidney disease often receive relatively aggressive care towards the end of life compared to patients with some other serious illnesses, such as cancer. To understand how the patterns of care for patients relate to their families’ perceptions, researchers looked at nearly 10,000 veterans with the disease who died in VA facilitates between 2009 and 2015, and analyzed survey results from their more than 5,400 bereaved family members.

The analysis revealed that more than half of patients spent two or more weeks in the hospital in the last three months of their life. Thirty-four percent of patients received an intensive procedure and 47 percent were admitted to the intensive care unit, both in the last 30 days of life. Only 36 percent of patients were receiving hospice services at their time of death and 38 percent received a palliative care consultation in their last three months of life.

“These rates of palliative care and hospice services are fairly comparable to prior studies of similar patients who die in inpatient settings,” Richards said.

The study also found that about 46 percent of patients had received some form of dialysis, a treatment that uses a machine to filter and purify the blood when the kidneys are not able to do so. Patients who received acute or maintenance dialysis were more likely to receive more intensive patterns of end-of-life care and less likely to receive hospice services than those not treated with dialysis but, surprisingly, only patients treated with maintenance dialysis had lower overall family ratings of care.

"Although family ratings of care were less favorable for patients who had been on maintenance dialysis than for those not treated with dialysis, this appeared to be explained by their more aggressive patterns of care and more limited use of palliative care and hospice services," Richards said. “However, our findings also argue for caution in using administrative data alone as a proxy for the quality of end-of-life care.”

Study co-authors include Chuan-Fen Liu, Paul Hebert, Mary Ersek, Melissa Wachterman, Lynn Reinke, Leslie Taylor and Ann O’Hare.