Black Families Wrestle With End-of-Life Decisions

By
We may earn a commission from links on this page.

With the pop-verse watching, Whitney Houston’s 21-year-old daughter, Bobbi Kristina Brown, is on life support in a suburban Atlanta hospital. Multiple questions loom about everything from her current medical condition to why, exactly, her family doesn’t want “husband/boyfriend” Nick Gordon by her side.

While acknowledging that her niece is still on a respirator, Bobbi Kristina’s aunt told an interviewer this week that her niece is showing signs of improvement. “She’s opening her eyes, and there’s a few more things that she’s doing, but Krissi is doing well right now. She is.” 

As the Brown family expresses optimism about Bobbi Kristina’s recovery, the situation reminds us of the challenging end-of-life planning that is often difficult in the black community. African Americans, especially in comparison with their white counterparts, have an extremely difficult time discussing end-of-life arrangements and are loath to broach the subject for a variety of emotional, religious and historical reasons.   

Advertisement

The racial disparities in end-of-life decisions are stark. They leave not only deep mental wounds but even deeper and irreparable socioeconomic scars that are felt over generations. As recent studies show, just 13 percent of African Americans in home health care have an end-of-life plan in place, compared with 32 percent of whites. Less than 35 percent of African Americans in nursing homes have a plan, compared with 70 percent of whites. And a Rutgers University Medicare analysis (pdf) showed that costs of medical care in the last six months of life are 32 percent higher among blacks than whites. Whites are also 2.4 times and 3.4 times as likely as blacks to have a living will or a durable power of attorney for health care, respectively.

Advertisement

The Denver-based nonprofit Compassion & Choices will seek to change that with an extensive discussion on the topic in Washington, D.C., on Feb. 24. In the meantime, we sought “the take” of several leading experts on the massive policy, social and cultural implications of a conversation that most African Americans just won’t have:

Dr. Melissa Clarke, author, physician and speaker, @DrMelissaClarke: My slogan is, “Be health empowered.” And not just saying that in your health decisions, but having integrity in how you take care of yourself. There are many reasons we’re not having this conversation as a community, because a lot more things are done to us. There’s a lot more stress on us: mistrust of the health care system, religious views, and doctors won’t bring it up. Added to that is a cultural barrier between black patients and white doctors. But the cost of a hospital stay is, on average, $2,000 to $3,000 per day, not including procedures. It all adds up. Instead of going through that, we need a multigenerational conversation.

Advertisement

There was an effort to encourage better end-of-life planning during implementation of the Affordable Care Act, but that was buried when certain politicians mischaracterized it as “death panels.” But a good policy start would be to build end-of-life decision-making into the Medicare reimbursement model, whereby doctors would be required to document that conversation, which would in turn encourage families to have the discussion. We also need to encourage those discussions within the religious community.

Minister Thomas L. Bowen, Shiloh Baptist Church, @thombowen: These ongoing public dramas present us with teaching moments. There is a need for a national black conversation, lest we let “the Lord catch us with our work undone.” African Americans have a shorter life expectancy than many groups. This amplifies the thought embraced by African Americans who are Christians: “We know not the day nor the hour.” These are decisions and matters that we should not be delaying. We simply do not like to talk up death. Many believe or fear that to talk about death is to invite it. We also often question the motives of those who bring it up, which creates conflict. We pay a huge price for not having “our affairs in order.” We leave our already grieving families to deal with decisions that are taxing in and of themselves.

Advertisement

Tiffany Tippins, Impactful Wealth Solutions: We’ve strayed away from how our parents and grandparents planned for their transition. There was a time when we preplanned for our funerals, paid for burial plots and communicated with our loved ones how we wanted to be remembered. This has changed drastically due to a variety of reasons. Our priorities have changed—we are more consumers than savers, so the cost of preplanning has been put on the back burner. Some of us would prefer the big house and the luxury car, but we don’t think about the what-ifs and how our families would be affected if something were to happen. The family dynamic has changed as well: People are staying single longer and delaying childbirth, so for some the need for end-of-life decisions may not be as important to someone who’s single versus someone who has a family.

Charles D. Ellison is a veteran political strategist and a contributing editor at The Root. He is also Washington correspondent for the Philadelphia Tribune, a frequent contributor to The Hill, the weekly Washington insider for WDAS-FM in Philadelphia and host of The Ellison Report, a weekly public-affairs magazine broadcast and podcast on WEAA 88.9 FM Baltimore. Follow him on Twitter.