Educating, empowering African-Americans about end-of-life care
As we celebrate Black History Month, one of our goals should be to change the history of African-Americans like my father enduring needless suffering when we die because we don’t prepare for the inevitable end of life.
When my father’s cancer came out of remission in 2010, he declined in a matter of months. I had never had one conversation with him about his end-of-life care goals, preferences and values, so he suffered terribly during his last days. My family spent so much time fighting over what we thought he wanted, when in reality, none of us knew what he really wanted. That experience taught me not only the importance of these discussions, but also how much of a need there is for us to start planning early, before a time of crisis.
Unfortunately, African-Americans are less likely to complete advance directives or have conversations with our families and healthcare providers about our their end-of-life care goals, preference and values, according to a 2014 report in the American Journal of Preventive Medicine. It is critical that our community begin focusing on advance care planning about the end-of-life care options, including educating ourselves about the value of hospice and palliative care.
The sad truth is that we suffer from higher rates of healthcare outcome disparities caused by smoking, obesity, hypertension, heart disease, and cancer. By not having frequent conversations about end-of-life care options early, to prepare before a health emergency occurs, people of color often opt for aggressive, futile medical treatments that only prolong an agonizing dying process. African Americans are less likely to access comfort care, hospice and palliative care to maximize the quality of remaining life.
In fact, while representing more than 13 percent of our nation’s population, according to U.S. Census data, but yet we account for only 8 percent of hospice users.
Unlike many of the other disparities that impact the community, this is one we actually have some control over. It starts with having a conversation. Unfortunately too many of us are not having discussions. In fact, 20 percent of African-Americans have not talked to anyone about end-of-life care, according to research conducted by the Duke Divinity School and the National Hospice and Palliative Care Organization.
Every individual has a responsibility to lead by example on healthcare issues, so I challenge you to start having conversations today, with your personal networks and your healthcare professionals. Complete an advanced directive and identify your power of attorney, the person who will make decisions for you in the case that you can not speak for yourself. The most loving thing you can do is to make your wishes known to your loved ones, it provides peace for all involved.
Tomorrow is not promised, so whether you want every treatment option available or none at all, it’s imperative to make sure it is clear to those who matter to you the most. Start this process by visiting Compassion & Choices website page, compassionandchoices.org/plan-your-care, where one can access state-specific advance directives and find other resources and tools to help, free of charge.
We even offer a diagnosis decoder that generates questions for physicians specific to a particular illness. Educating and utilizing these resources will not only empower you, it will also have a positive and lasting impact on our community as a whole and the way we experience end of life. Remember…talking about death will not kill you…advocate for yourself!
Article by Brandi Alexander. Alexander is the national constituency director for Compassion & Choices, the nation’s largest, oldest and most active nonprofit organization dedicated to expanding and improving patient-driven, end-of-life care options.