Racial disparities and inequities in American healthcare are evident in daily life, but regrettably they are also prominent in death. In these final days of Black History Month, it is imperative to reflect on the final days of all African-Americans and the choices they have within our health care system. These are the choices they aren’t taking, and the phenomenon serves as a means of further disenfranchisement from the medical community at large.
The National Center for Health Statistics reports that African-Americans in home health care and nursing homes are half as likely as whites to have an advance directive, such as a living will or a do-not-resuscitate (DNR) order. This disparity leaves African-Americans at risk for unwanted medical procedures, unnecessary pain and family strife.
Earlier this month, Sadie (she prefers her last name not be used) came to the Cancer Center for her follow up visit. She was accompanied by a version of her usual entourage- three of her six children and two of her 21 grandchildren- one of them with Sadie’s great-grandchild in her arms. It is clear that my patient is the proud and respected matriarch of this large, African-American family.
With six sets of eyes upon us, Sadie cautiously made her way to my poorly designed exam table as I proceeded with my ritualistic physical exam. The anxiety in the crowded room was palpable- Sadie’s family was awaiting the results of her latest CT scan. The test would determine whether or not her most recent round of chemotherapy had helped. I knew a difficult conversation was coming.
In the past year of treating Sadie’s advanced gastric cancer, the two of us have discussed advance care planning and the benefits of advance directives. She has always met my suggestions with a variation of the same response: “It is in God’s hands.”
I told Sadie of her continued tumor growth, despite chemotherapy. I showed her this growth on the CT scans. Sadie knows there is no other available therapy that is likely to be of benefit to her.
On this day, I broached the option of palliative care and home hospice services. I believe this approach would control my patient’s symptoms as her disease progresses and provide emotional and social support to her entire family. Ultimately, palliative care and hospice would assist in providing Sadie a peaceful death.
The idea landed with a thud. Adamant refusals followed initial blank stares. I was getting nowhere, but I wasn’t surprised. Multiple studies have demonstrated a disparity between blacks and whites in the use of hospice services.
The reasons for this disparity are complex. Misconceptions about hospice care are numerous- that it means giving up hope, that it hastens death, and that it prevents patients from receiving the medical care they need. The health care system bears great responsibility for this disparity, too- outreach efforts to the African American community are lacking, and medical center staffing does not always reflect the population that a particular facility serves.
Cultural and religious beliefs, however, are often paramount in this reality. Sadie relies completely on God’s omnipotence; she believes it is her Creator’s sole decision to decide the time of her death. What Sadie’s family and so many others do not acknowledge however, is that in the absence of clearly defined advance directives, extensive medical intervention may keep her alive well beyond the natural course of her disease. Add to these factors a well-warranted mistrust of the health care system and a culture accustomed to so much suffering for so many generations. Advance care planning within the black community is difficult to do.
As I looked around the room at Sadie’s family, I desperately wanted to guide them down a path that respects their faith and to also offer a perspective that would instill confidence that everything is done for her. Most importantly, I wantedt o provide Sadie with a dignified and honorable death.
Silently, I hoped that Sadie would die quietly in her sleep. Perhaps then, everyone would be relieved to know that her condition was “in God’s hands.” However, even this circumstance may raise concerns in the absence of an advance directive ordering not to resuscitate. If Sadie’s family were to call 911, Emergency Medical Services may be obligated to subject her to invasive life-sustaining therapy, such as cardiopulmonary resuscitation.
I eventually pursued a different approach. With such a large, involved family it is common for relatives to in fight or to disagree with the patient regarding the best course of action. This bias often manifests at a time of crisis.
If Sadie’s clinical condition were to deteriorate and she were brought to the hospital, it is likely that at some point during her hospitalization she would need to defer to a surrogate on medical intervention. Would Sadie want mechanical ventilation to maintain her breathing? Would Sadie want transfer to an intensive care unit for more invasive monitoring and therapy? Would Sadie want comfort measures with minimal intervention to allow a natural death? The choice of a surrogate decision maker is crucial, and an approach that may come easier for this family.
An advance directive indicates the power of attorney for healthcare, and it comes with a great deal of responsibility. The surrogate must act on behalf of the patient- a difficult task in a time of emotional uncertainty and lack of guidance.
A recent study of African-Americans on dialysis and their decision-makers reported that nearly 80% of surrogates were confidant in their decision-making capacity. However, when provided with scenarios in which a decision had to be made regarding the goal of care to delay death and pursue life-sustaining therapy or focus on comfort and suspend life-sustaining therapy, only 34.5% of the surrogates were aligned with the patient’s goal of care.
Sadie and her family ultimately selected her eldest daughter as her power of attorney. I encouraged my patient to discuss with her daughter the values that define her vision of an acceptable life. This is a conversation that is to be continued, and it is my hope that together we can define specific actions that can result in a peaceful death for Sadie and a regret-free period of grief for her entire family. On a national level, it is imperative that the medical community reach out to all of our diverse cultures and provide a system of end of life care that is aligned with the beliefs and values that define their life.
Mary F Mulcahy is an associate professor in the Department of Hematology Oncology at Northwestern University’s Feinberg School of Medicine. She is the co-founder of Life Matters Media, an online resource to help all of those involved in end of life decision making.