So we have made it to the end of the holiday season and the beginning of a new year! I am finishing up my personal carton of eggnog (because I don’t believe in sharing) as we speak. But this year, I am especially reflective because I lost a loved one in a bioethical crisis this year. When I use the term bioethical crisis, I’m using bioethics in a broader sense of the word. Personally, I believe that referring to bioethics only when discussing autonomy in death and research ethics limits the field profoundly. I define a bioethical crisis as any medical, scientific, or public health event that compromises one of four pillars of bioethics – autonomy, beneficence, nonmaleficence, and justice. After pursuing an education in bioethics and the law, I naively thought that I would be spared this type of pain. But to quote Mike Tyson – “Everyone has a plan until they get punched in the mouth.”
The interesting thing about experiencing crisis as an Black person, is that our crises are not always documented in traditional fashions. For example, we may get battered by the police, but we won’t press charges for assault and battery. That doesn’t mean we are superhumanly strong or that we don’t feel the impact of the event. That story is passed along in individuals’ families and no one forgets it. The feelings of frustration, anger, and hurt sit inside like a bad meal. This also happens when bioethical crises happen to African-Americans. We experience the pain and the trauma, but we may not report it to the authorities or hospital administrator. And that prevents these experiences from being formally documented – thus skewing the data on why Black people mistrust the healthcare system. That’s what happened to my family. We are a family of lawyers, plus an ethicist, and it still didn’t get formally documented. Charges never got pressed.
I know for a fact that I am not the only one who has experienced a bioethical crisis that hit close to home. Maybe your physician was negligent to you or a loved one or they did not give you a fair opportunity for informed consent. Maybe these actions led to permanent damage or death. But I want to encourage anyone who has been through a bioethical crisis to talk to someone about what happened. Therapy is a great resource in crisis. A good therapist can help you work through the feelings surround the situation and give you the tools to help you move forward (cost-effective therapy here). Encouraging your family to have open dialogue about what happened will benefit everyone involved in the healing process. I also want to encourage you to take action. If possible, don’t be afraid to take legal or administrative action. There are many opportunities for closure outside of a court room. Hospital ethics committees have to answer for certain crises. Most cases are resolved out of court. There are avenues to make sure justice is served. Lastly, don’t let the fear from the crisis consume you. It is completely understandable to fear physicians or healthcare entities after a bioethical crisis. For African-Americans, that fear is even more profound because of mostly negative relationship we have had with the healthcare system. However, part of the magic of being black is the strength to push against the things that attempt to consume us. You don’t have to sink under fear. Don’t stop seeing your doctor. Don’t stop getting help. Ask more questions. Get more engaged.
Hang in there this holiday season. I know things will never be the same, but they can still get better.
All my love,
The Neighborhood Bioethicist.
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