Use of Palliative Care Lags Among Minority Patients at the End of Life

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Use of palliative care among patients with end stage renal disease (ESRD) has increased steadily since 2004, but use among minority patients lags behind whites, according to a study presented at Kidney Week 2016.

Palliative care, which focuses on comfort measures and may include discontinuing dialysis, may ease the burden for patients with ESRD who are nearing the end of life. To help ensure that patients are advised about the option of palliative care, the Centers for Medicare & Medicaid Services included voluntary end-of-life counseling in the 2016 physician fee schedule, wrote lead author Haytham Alkhaimy, MD, of Augusta (Georgia) University and his colleagues in their abstract.

“In medicine, unfortunately we sometimes prolong suffering,” said Alkhaimy. “We shouldn’t be shy about talking about palliative care at some point.”

Alkhaimy and his colleagues analyzed all deaths of patients receiving dialysis between 2004 and 2011 in the United States Renal Data System (USRDS) to see how many received palliative care or discontinued dialysis at least 4 days before death. Among the 874,777 patients who initiated dialysis during that period, 52% had died by the end of 2012.

Use of palliative care increased from 4% to 20% of dialysis patients in the database between 2004 and 2011, according to the analysis. “This is good news,” Alkhaimy said. “We have been using palliative care more.”

Patients who received palliative care were significantly more likely to be older at the start of dialysis (72±12 vs. 67±14 years). Women made up 47% of the palliative care patients vs. 44% of nonpalliative care patients.

Patients who had more hospitalizations were also more likely to receive palliative care (RR 1.04), likely because these patients had exposure to more physicians or to hospitals with palliative care units, suggested Alkhaimy.

Palliative care did not appear to hasten death, as there was no significant difference in the time to death between the two groups.

“If you go into palliative care you may think your life will be shorter, but this shows it will be the same,” Alkhaimy said. The analysis included all patients who had a palliative care code under ICD9, he said. Some may have continued dialysis while receiving palliative care, which may have prolonged life.

Patients whose causes of death were coded as cardiac, gastrointestinal, metabolic, vascular, or infection-related were less likely to receive palliative care. “If you have a heart attack or something immediate there may not be time to go into palliative care,” Alkhaimy explained.

There were also significant differences between the use of palliative care by minority patients and white patients. About 80% of the patients receiving palliative care were white, 17% were black, and only 3% were from other minority groups.

The study could not explain the reasons behind the differences in palliative care utilization between groups, noted Alkhaimy. He said there is a need for more studies, including prospective studies, about the use of palliative care to help understand its use in patients with ESRD.

There are likely multiple factors that might contribute to disparities in the use of palliative care, said L. Ebony Boulware, MD, MPH, chief of the division of general internal medicine at Duke University School of Medicine.

“Evidence shows that there are differences in patient preferences, patient-provider communication, education, and lack of trust among minorities, all of which could influence receipt and use of palliative care,” Boulware said.

Studies aimed at understanding patient, provider, and system level factors that influence use of palliative care in dialysis patients are warranted, she said. In particular, identifying barriers to palliative care, especially for minorities, might help explain the patterns identified in the study.

“Efforts to educate patients as well as providers and to make both aware of the role of palliative care in the context of dialysis may be critically needed,” Boulware said.

In the meantime, Alkhaimy suggested that clinicians educate themselves about palliative care so they can discuss the option with patients who might benefit. He acknowledged that end-of-life care options are a difficult topic to discuss, which may cause physicians to hesitate.

“You don’t want to be uncomfortable,” he said. “You don’t want the patient to be uncomfortable.”

But he noted that if a patient is nearing the end of life and has a poor quality of life as a result of dialysis or other treatments, failing to discuss palliative care may prolong their suffering.

“Palliative care is sometimes needed for comfort measures and to improve a patient’s quality of life,” he said.

“Racial Disparities in the Utilization of Palliative Care in Dialysis Patients from the United States Renal Data System” (Abstract 4963)