Type of illness, race can lead to end-of-life care disparity

A patient’s illness, race and ethnicity can significantly influence how much care they receive in their final days or how satisfied their family members may be with that care.

The families of patients with cancer or dementia tend to be more satisfied with the quality of end-of-life care received than the families of patients with organ failure or frailty, according to a study published in the Journal of the American Medical Association Internal Medicine on Sunday.

Patients with cancer or dementia tend to have higher rates of consultations by palliative care specialists and more do-not-resuscitate orders, and fewer tend to die in hospital intensive care units, said Dr. Melissa Wachterman, a physician at Brigham and Women’s Hospital and the VA Boston Healthcare System and lead author of the study. Palliative care is the treatment of pain and other symptoms as well as a service to help ensure that seriously ill patients receive the care they prefer.

“A lot of the focus of end-of-life care is on cancer, but most people don’t die of cancer,” Wachterman said. “Our findings show that the quality of end-of-life care for other illnesses is not as good.”

For the study, which was presented at AcademyHealth’s annual research meeting in Boston on Sunday, the families of more than 34,000 patients who died in the VA health system between 2009 and 2012 were surveyed. The researchers examined the patients’ medical records as well as their family members’ survey responses.

“The main measure that we looked at was, ‘How would you rate the overall care?’ ” Wachterman explained. “There were some other questions about ‘Did you receive care specific to your preferences?’ ‘Did you feel like you were listened to?’ … And our real focus was, ‘How would you describe the care at the end of life?’ “

Illness type disparity

The researchers discovered that only about half of patients with end-stage renal disease, heart failure and frailty received palliative care, compared with about 73% of cancer patients and 61% of dementia patients. Furthermore, about one-third of patients with end-stage renal disease, heart failure and frailty died in the intensive care unit, where they are typically given close observation and monitoring, more than double the rates among cancer and dementia patients.

“This paper shows that we have made progress for patients with cancer and dementia – for example, fewer ICU visits – but there is a ways to go for other prevalent medical conditions, like end-stage heart, lung or kidney disease,” said Dr. Justin Bekelman, a radiation oncologist at the University of Pennsylvania who was not involved in the new study. “As baby boomers age and the elderly shift to the ‘old old,’ this article is a clarion call for more attention to end-of-life care across the spectrum of serious illness.”

He added that palliative care is sometimes an overlooked type of medical care for patients with a serious illness. Dr. Amos Bailey, a professor at the University of Colorado School of Medicine who wrote an editorial accompanying the study, seems to agree. “These results, as the authors point out, suggest that interventions to increase palliative care services for non-cancer diagnoses could improve … patient quality of life,” Bailey wrote in JAMA Internal Medicine.

“While early access to palliative care services may remain the goal, current and future workforce shortages will continue to limit access,” he added. “Not every patient needs a palliative care consultation with a specialist palliative care physician, nurse and social worker. Understanding which patients need which components, and expanding primary palliative care, may be the only way to meet the growing need for patients with advanced progressive medical illnesses.”

Racial disparity

Additionally, scientists have long known about racial disparities in the quality of health care received in the United States. Now, a separate study that was presented at AcademyHealth’s annual research meeting reveals similar disparities in the quality of end-of-life care.

The study involved survey responses from the family members of more than 50,000 patients who died in the VA health system between 2009 and 2014.

“Our study is the largest to date of racial/ethnic disparities in end-of-life care among veterans and [one of] the first to document disparities in family perceptions of quality of end-of-life care,” said the study’s lead author, Ann Kutney-Lee, assistant professor at the University of Pennsylvania School of Nursing and health research scientist at the Philadelphia VA Medical Center.

The researchers found that black veterans were less likely than whites to receive spiritual care, such as a chaplain consult. Additionally, blacks, Latinos and other racial minorities were less likely than whites to report receiving “excellent” care.

“On the whole, we found that all veterans, regardless of race or ethnicity, are equally likely to receive services associated with higher quality at the end of life,” Kutney-Lee said. “That said, the fact that we did find a marked disparity in perceptions of that care between family members of minority and non-minority veterans, suggests that something more subtle or otherwise undetected is occurring and reinforces the need to understand the underlying reasons why.”

She added that a next step is to examine the reasons for such disparities found in end-of-life care and to encourage health care providers to be mindful of learning patients’ and family members’ preferences for care.

“We need to make sure that doctors feel comfortable having discussions about what’s important to the patient,” Wachterman said.

“I think that there is an increasing recognition that these conversations are uncomfortable, and as part of medical training, providers need to have practice and support and mentorship around having them,” she added. “So increasing education for providers about having these conversations would be beneficial.”

A national poll of 736 primary care doctors and specialists, released in April, found that almost half of physicians tend to feel unsure of what to say when speaking with their patients about end-of-life care.

To encourage these important end-of-life care conversations, the Centers for Medicare and Medicaid Services now reimburses doctors and other professionals $86 (PDF) for leading such discussions when they bill for advance care planning conversations.

“These conversations are important,” Wachterman said. “They can help to improve the quality of care for a patient.”