Not long ago, I was sitting at the bedside of my mother as she lay in a hospital bed in the critical care unit on a ventilator. With a tube in her throat, her voice was silenced. We had no idea who she wanted to make decisions for her. We didn’t know her wishes should she experience a decline — we didn’t even know if she wanted to be intubated in the first place. In this case, her right to make decisions about her healthcare was not stripped of her but rather was not exercised.
As a justice-seeker and end-of-life spiritual care practitioner, I often bring up advanced care planning to my family’s dismay. My mother had been reluctant to have any conversation about it, shrugging me off, quipping, “Just make sure they don’t put any makeup on me in the casket.” Thank God, she has recovered and is doing well, but the reality is that she, like many African-Americans, do not participate in advanced care planning and making end-of-life decisions.
Poet and social activist Langston Hughes wrote, “There is no color line in death.” Yet, when it comes to advanced care planning and end-of-life care, the color line is obvious. African-Americans disproportionately engage in advance care planning and utilize hospice and palliative care at lower rates than whites, thus affecting the quality of life as death approaches. The reasons are myriad: cultural factors, economic concerns, negative perceptions of hospice and palliative care, and mistrust of physicians and the healthcare system. African-Americans have a strained relationship with the healthcare industry rooted in historical facts such as the exploitation of Black bodies for medical research throughout American history, such as the Tuskegee experiment, a decades-long “study” on African-American men with syphilis performed without informed consent and leaving the disease untreated, even after an effective cure had been found. Also, embedded in this lack of advance care planning and underutilization of hospice and palliative care is the theological understanding that pain and suffering are part of God’s plan for our lives. There are many people I have encountered in my work in hospice and in church ministry that bear unnecessary suffering, whether physical pain or emotional burdens because they believe that is their cross to bear. This is not solely my experience, but a widely held belief that hinders patients from managing their pain and families from receiving the additional services that would ease their burden of care.
Besides, we’re living our best lives and who has time to plan for healthcare crisis or think about death?
But what if living our best lives means considering healthcare decisions and end-of-life planning? What if making healthcare decisions is not merely a matter of physical health, but a matter of justice? In addition to racial, gender, economic, and educational equity, quality healthcare is a justice concern. And I would argue, given my particular role as a hospice chaplain providing spiritual care and emotional support to patients and families during end-of-life, that advanced care planning and comprehensive end-of-life care are part of quality healthcare. In the National Hospice and Palliative Care “Outreach to African Americans Guide,” Dr. Richard Payne, Professor of Medicine and Divinity at the Duke Institute of End of Life Care wrote, “Hospice offers the best hope not to be alone, to be with family, to have pain controlled, and to be connected to your faith and beliefs. We are as entitled as anyone else to have these hopes fulfilled.”
If Black lives matter, and they do, then one way we proclaim that we matter is by exercising agency in our healthcare, including making decisions about who can speak for us when we are unable, whether or not we want aggressive treatment such as resuscitation and intubation, and how we want to be treated at the end of life. Given the historical exploitation of Black bodies in medical research—often carried out without our consent or after death—raising our voices and making our own decisions related to healthcare is an act of resistance, declaring our dignity and worth in a country where our personhood is devalued a daily basis.
I hear you. People of a certain age should engage in those conversations and make their healthcare decisions known. But I’m young, I’m healthy, and I’m living my best life. I have plenty of time before I have to think about advanced care planning.
Just as there is no color line in death, there is also no age line. Crisis, disease, terminal illness, and death can come at any age—including in your twenties and thirties. And while healthcare decisions can be made at any time, the best time to make healthcare decisions is during times of calm, clarity of mind, and relatively good health.
Not sure where to start? Here are some practical suggestions:
- Consider: Reflect upon what quality of life and a good death means for you. Think about the person who would best speak for you in the event you cannot make decisions for yourself.
- Voice: Use one or more of the many tools available (living will, power of attorney, advance directive, or the Five Wishes document) to put your healthcare decisions on paper. If you have a chronic health issue, consider completing a Physician Order for Life-Sustaining Treatment (POLST) with your physician. When choosing a healthcare proxy, but sure to dialogue with them about your wishes and their ability to carry them out.
- Engage: Share your decisions with your loved ones and friends and encourage them to have the conversation and make their choices known. Move the discussion beyond your immediate circle to your congregation and community. As a matter of justice, the conversation on advanced care planning should be had far and wide.
- Revisit: Healthcare decisions will evolve as we do. It is important to note that these are not static documents, but that they should be revisited and revised as our lives and perspectives change. A general rule of thumb would be to revisit the document every ten years and with major life changes (marriage, children, the onset of disease, etc.).
Making healthcare decisions is not only wise for personal quality of life, but it also bears witness to the power of agency, advocacy, and the humanity of African-Americans. For some, it may seem like just a document, but for African-Americans, it is an act of resistance, and an act of freedom, and an act of justice.
For more information, visit theconversationproject.org.