Your Proactive Caregiver Advocate: Dr. Cynthia Speaks

Topic: Palliation or Hospice- African American Family Struggle

As we continue to highlight Black History Month, looking at the value of palliative care and hospice care in the African American family is the topic. Characteristically, educating a culture of people is often well-received, if the knowledge is coming from individuals that look like them. The same can be true for lived experiences, for they invite others to do better, live better, or behave in an appropriate manner based on the circumstances. This discussion centers on how one’s end of life should look. There is no doubt that discussing the demise of loved ones is hard. But, I challenge you to consider that the lack of preparation, can be even harder for the family members and for a loved one who is confronted with a life-altering health condition that may go on for an extended period of time. It is vital to have challenging conversations to have peace and comfort at the end of life.

Proactiveness Versus Reactive Bumbles

It is a known fact that proactiveness is key to, not just the end of life, but life in general. End-of-life choices are scarce and having advance directives in place that direct care or personal decisions are often absent in African-American families. I felt it might be helpful to share how palliation and hospice care can play a vital role to support the black family when needed.

Definition in Brief

Palliation …the act or process of relieving suffering without curing the disease that is causing it. Palliation is not always end-of-life care.

Hospice…the act of compassionate care for a loved one at the end of life.

I am not sure why the word hospice triggers giving up on life in the Black family, but we must think differently and consider the quality of someone’s life when health declines. Prolonging what we call ‘futile’ care, especially with terminal illnesses, is hard on so many fronts. It does start with trust and solid information. Yes, we rely on our faith, but we must also rely on amazing healthcare professionals who have researched the trajectory of how illness and disease invade our bodies to the point of knowing modern medicine is no longer feasible or compassionate.

Sidebar…I recently read an article by someone who shared her disgust about her mother not dying fast enough thanks to “quote…compassionate care.” Honestly, I did not know how to feel after reading the article. I could not tell if it was the pain of her mother’s impending death or a bad experience with the organization. I wondered if the introduction of palliation could have been introduced sooner with a transition into (compassionate care) hospice would have helped.

As Your Proactive Caregiver Advocate, I was one who consulted hospice for my mother. I understood my mother’s body was tired. I understood my sisters were not ready for the news. As mother’s advocate, I did what was best by honoring her wishes(even when it was painful). We were able to embrace palliative care with my family and me being by her side, doing those things that mattered. While working in the acute care setting as a registered nurse, working with African American families, I experience firsthand that end-of-life choices were shaped by insufficient knowledge, religious and cultural beliefs, and skepticism toward health care practitioners. While this may be the mindset, remember none of us will live forever. Seek resources in your area on palliation and hospice care. Consider completing your advance directive and end-of-life wishes and sharing them with your family and friends. Ask yourself…how would you want the end of life to look like for you and your loved ones? Something to think about! Be safe! Be well!