by Clarene Mitchell
“It’s been too hard living but I’m afraid to die ‘cause I don’t know what’s up there beyond the sky.”
The above lyrics are from Sam Cooke’s A Change is Gonna Come. This song was an anthem of the 1960’s civil rights movement, but it is also very telling of how death is viewed amongst the Black population. Although Blacks are generally very spiritual with a strong belief in heaven, the community struggles with the dying process. The death and dying struggle leads to resistance and under-utilization of end-of-life benefits that hospice services can give.
According to a 2010 report from the National Hospice and Pallative Care Organization, African Americans only made up 8.7% of hospice patients. The hospice patient population is heavily dominated by whites, 80.5%. Yet, African Americans continue to die at higher rates due to the higher incidences of chronic diseases, and limited access to preventive and medical care. It is clear that more African Americans could benefit from end-of-life care.
November is National Hospice Month, which provides an opportunity for African Americans to begin discussing death and viewing it differently. End-of-life care is becoming even more relevant due to the Affordable Care Act. It includes measures to protect and expand hospice services under federal health care programs.
Hospice is defined as supportive services that are provided to dying persons and their families, in the form of physical, psychological, social, and spiritual care from an interdisciplinary team of professionals and volunteers. These services can be provided in the home or in an inpatient setting. The Medicare hospice benefit, Medicaid and most private insurance plans cover the services. In most cases, a family will have no out-of-pocket expenses related to hospice care.
The long histories of injustices that African Americans have suffered in the medical system, along with the health disparities that plague the community, are reasons why there is the cultural resistance to hospice care. Compound this with the beliefs and cultural norms that make hospice a seemingly unobtainable service as well.
On any given Sunday at any Black church, one can hear boisterous songs relaying a strong belief in God. These songs acknowledge that this world is not our home and there is eager anticipation of entering into the pearly gates of heaven when our time comes.
Yet, when faced with a terminal illness, African Americans often want the heaven bound train to abruptly stop, back up and allow them to get off and postpone their appointment with God for another day. This reaction is a contradiction to the strong God believing and heaven bound faith that is professed.
Other times the illness is given over to God (’the Lord will work it out’) and the patient acts as if they have no power in the transition process, prolonging their suffering and pain as if God wants them to just bear it all.
Another cultural norm that further complicates Black resistance to hospice is the “heroic mindset.” This mindset drives people faced with death to demand all extreme measures be explored to cure them and prolong their life.
The reality is when a disease has reached a fatal point; the pursuit of extreme measures creates false hope for the patient and their family and causes excessive discomfort and pain for the patient. The pursuit of being cured is done in vain.
Many African Americans believe utilizing hospice services is a betrayal to their loved one; throwing them into an institution where they will be ‘doped up’ and starved to death. Many do not realize the loved one would receive needed care and attention if they were utilizing hospice care. In addition, hospice services can be provided wherever the patient resides, including in their home.
By utilizing hospice, the ill family member receives care that the family members do not have the education or expertise to provide. The family is then available to enjoy the remaining time with the loved one instead of stretching themselves too thin by trying to take care of them.
Often times, without the assistance from a hospice provider, caregivers burnout from taking care of their loved ones and they themselves may experience increased health issues.
Hospice patients are more content because they are living their final days on their terms instead of spending all of their energies and resources fighting against the illness, and the inevitable.
The low utilization of hospice by Blacks can also be attributed to a lack of awareness and inaccurate information about eligibility criteria for benefits.
The dying process is one that we all must face. This process would be easier if we began exploring end-of-life options before we need them. Otherwise, we become overwhelmed by our emotions when we or a family is faced with a terminal illness and our ability to make sound decisions is compromised.
This resistance to hospice was not shared by many prominent African Americans who benefited from hospice as they transitioned into death, such as attorney Johnnie Cochran, singer/actress Abbey Lincoln, Dr. Benjamin L. Hooks, Jr. and Marvin Isley of the famed Isely Brothers. In fact, when doctors found advanced stage liver cancer in playwright August Wilson, he stated, “It’s not like poker, you can’t throw your hand in. I’ve lived a blessed life. I’m ready.”
As in many aspects of life, there are benefits and challenges that come with hospice. It is crucial that families thoroughly investigate hospice service providers. Active and engaged involvement is necessary and appropriate care must be demanded.
The quality of life for many African Americans is poor throughout their lives; the final days should be looked upon as a time of peace, a time in which one can have power over how their remaining days will be spent.
There can be dignity in death, but African Americans must feel empowered to utilize the services that are available to them. This utilization can help to provide relief to the patients and their loved ones.
It is vitally important that our final days of life, whether it be days or months (or even years), are filled with as much quality of life as possible. After all, it is the quality, not the quantity that matters. This can be ensured when we change our view of death, and we embrace it as a normal course of life.
Mrs. Clarene Mitchell is a free-lance journalist and health disparities advocate in Milwaukee, Wisconsin. Mrs. Mitchell’s professional experience includes her formerly working as a Community Liaison for a national hospice company.