The entire lifespan of most African Americans is consumed by efforts to stay alive: overcoming obstacles associated with societal injustice and inequality, and in many cases, institutional racism. Perhaps this is one of the main reasons that, traditionally, African Americans tend to be less prepared for the inevitability of death.
In 2013, The Pew Foundation did a study and found that while 73 percent of all Americans have given “some thought” to end-of-life, only 37 percent of African Americans have done the same. This means that when doctors and others on the care team of a terminally-ill patient may decide to discontinue providing care and treatment; you may feel that your loved one has had enough, and should be allowed to die in peace, with dignity.
For the disproportionate number of us, death is accompanied by the dilemmas around how we choose to die. Hospice; Palliative Care; Advance Directives; and Competency become terms that we, or our loved ones, are all of a sudden faced with and expected to deal with.
What we know is that African Americans are less likely than any other group to be prepared for end-of-life, and not surprisingly, are less likely to have a prepared Advance directive. The Pew study also found that African Americans tend to die more often “hooked up” to machinery in hospitals and facilities, away from home, suffering and in pain. This doesn’t have to be our fate.
First, let’s talk about Advanced Directives. This is the document that should be prepared to outline, in detail, what type of care (if any) we desire as our lives come to an end, and we are not able to make decisions for ourselves.
An Advanced Directive includes things that typically are not even thought about during times when life is good.
Generally, it will include things such as such as a living will or do-not-resuscitate order, or an identification of a health care surrogate. Regrettably, it’s not until we are in a hospital ICU; a hospice Center; or even on home hospice that we (or our loved ones) are confronted with having to make difficult decisions, while dealing with imminent death.
In spite of the fact that studies show that 80 percent of Americans would prefer to die at home, the reality is that 60 percent of us will die in a hospital; 20 percent of us will die in a nursing home; and only 20 percent will end up in a situation where we will be able to make our transition in the comfort and peace of our own home.
If you are not competent or capable of making medical decisions and you do not have an advance directive, or it is unavailable when needed, decisions will nevertheless have to be made.
In the absence of an advance directive, this could become a point of contention, and the patient is caught in the middle. Or, it could be the other way around, you may feel that there is still hope for a recovery, and the doctors feel that there isn’t. Again, the patient lies there in limbo, and often suffering unnecessarily. For African Americans, it’s worse. One study found that only 13 percent of all African Americans have an advanced directive in place.
It can be a difficult and often, an uncomfortable conversation. But collectively, we must begin having conversations during the “good” times in life with our families and loved ones about what we would do and don’t want should we ever find ourselves in a position where we are unable to make medical decisions for ourselves.
Think about how often we attend funerals, and families are still reeling over how things came to an end with conflict and contention between families of a patient who died, and the medical staff at the hospital. Think about how different it would be if we made our wishes known, before something happened unexpectedly.
Another critically underutilized resource for many terminally ill African-Americans and their families is hospice. Many African Americans are either unaware of hospice care or lack a clear understanding of what hospice is.
Most importantly, let your loved ones know what you have in your advanced directive. People only like surprises for their birthday. Don’t wait for them to find out at an emotionally difficult time when they are grappling with the inevitability of your death. Contrary to most widely-held beliefs, hospice in and of itself is not a “death sentence.”
The goal of home hospice is comfort and pain management when a cure is no longer medically possible. Curative, life-prolonging treatments such as surgeries and chemotherapy are stopped, and the focus shifts to quality of life. Hospice care focuses on the patient’s physical, emotional, social, and spiritual needs.
Too many people, particularly African Americans, suffer in anguish, robbing themselves of an end-of-life absent of dignity and a deserving quality of life.
You don’t need a lawyer to create your advanced directive. But you do need to make sure you understand the laws of the state you live in regarding advanced directives. Some states have restrictions that you need to be aware of that may prohibit your wishes.
And finally, keep in mind that no one gets out alive; make sure you’ve properly prepared for your exit.
Remember, I’m not a doctor. I just sound like one. Take good care of yourself and live the best life possible!
The information included in this column is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. Glenn Ellis, is a Research Bioethics Fellow at Harvard Medical School and author of Which Doctor?, and Information is the Best Medicine. For more good health information listen to Glenn, on radio in Philadelphia; Boston; Chicago; Shreveport; Los Angeles; and Birmingham., or visit: www.glennellis.com