End-of-life care, catapulted into the public eye with the uproar over “death panels”, has since evolved into a nuanced discussion of how we can help people die. One thing that often gets lost in the mix is the fact that minorities have less, and worse, access to end-of-life care. And in a nation with an ageing population, 20% of whom identify as minorities, this is a problem.
A number of studies document lower quality end-of-life care for minorities regarding satisfaction, communication and pain management. The 2014 Institute of Medicine report Dying in America notes that the nation’s healthcare system is becoming increasingly hampered by issues that limit the delivery of end-of-life care, many of which involve barriers to access of care in disadvantaged groups.
On 30 October, the Centers for Medicare and Medicaid services finalized regulations that will allow Medicare to pay physicians and other healthcare professionals to provide advance end-of-life care planning. Starting 1 January 2016, advanced counseling will be billed as a separate service, with no limit to the number of sessions between providers and patients. This is a victory for end-of-life advocates, but it won’t help all Americans equally.
Minority communities access end-of-life care at far lower rates than white counterparts. When providers and patients differ in culture, religion and ethnicity, many providers are less likely to explain the full spectrum of end-of-life care. On the opposite end, many patients don’t trust the provider and hesitate to build that relationship. The lack of follow-up or understanding is something I have witnessed in the case of South Asian and black patients in New York City public hospitals when I helped manage a quality improvement grant there.
These same hospitals, which serve a large chunk of minority communities, lack palliative care teams. Scaleable efforts, especially in California public safety net hospitals, have improved upon providing palliative care to more diverse populations. An important aspect of end-of-life care, palliative care seeks to provide care that improves the quality of life of people with serious or life-threatening diseases.
While working with Medicare patients in Central Harlem and Queens from 2013-2014, the underutilization of palliative care among minority patients – mostly Asian immigrants, Asian Americans and black Americans – was partially due to a lack of proper referrals to palliative care and hospice services. Many times this was due to the financial and resource burden placed on these safety-net hospitals, which happened to service a majority of minorities. Other times it was due to a breakdown in the patient-provider relationship.
Furthermore, the general differences in the use of advance directives between white and minority populations rests on many factors beyond the reach of doctors, including stigma. I recall a dinner party when my mom was talking to one of our family friends about how shocked she was to first learn about advanced directives months after our family moved to California from India.
Oregon Democratic representative Earl Blumenauer called Medicare’s new policy “a turning point in end-of-life care”. He also said the next step will be to ensure doctors are trained to have these difficult conversations surrounding death and dying. I previously wrote about the end-of-life care I hoped for my grandmother throughout her battle with breast cancer, and how the system failed her.
I see this recent Medicare expansion as a way to highlight the disparities in healthcare delivery for minority populations and to create change in our larger healthcare system in a way that’s more inclusive of underserved minorities, including promoting health disparities research, education and community outreach targeted to end-of-life issues.
For starters, the medical profession should incorporate end-of-life care training into the clinical training of all specialties. Death and dying affects all of us – providers and patients – and we still have a long way to go before we are truly equipped to deal with it.
