By Rev. Donald L. Perryman, Ph.D.
The Truth Contributor
Given the data on this unjust relationship between Black people and health and health care, it is imperative that we create a productive dialogue on what it means to be Black and sick in America. – Keisha Ray
Given the realities of how inequities negatively shape our overall health, Advance Care Planning (ACP) is critical. However, it remains one of the most neglected topics within the African American Community.
Retired Huntington Bank executive and now president of N-Sync, LLC, a consulting firm, Deborah Barnett vividly recalls the urgency and panic when her late mother went into cardiac arrest. Rushing to the hospital, she was overwhelmed with decisions and paperwork, realizing she couldn’t make these choices alone without consulting her siblings.
In the midst of the chaos, a medical doctor friend arrived, advising her to take her time and consult with him before making any decisions. This calm, thoughtful guidance coincided with her mother’s remarkable recovery, highlighting the crucial role of support systems and careful deliberation during critical moments.
Barnett’s experience inspired her to create the “Getting Your Affairs in Order” program, designed to educate the African American community about the need for preparedness, effective communication, and the benefits of having a clear, documented plan.
“Getting Your Affairs in Order” is an Advance Care Planning tool that helps individuals make informed medical decisions while providing emotional and psychological comfort to families during challenging times.
We spoke with Barnett to discuss the significance of “Getting Your Affairs in Order” within the Black community and how the targeted program promotes awareness, education, and proactive health management.
Perryman: Please describe how the “Getting Your Affairs in Order” program came about.
Barnett: People need information about organizing their affairs. You may have even seen it with your own family and friends – their affairs are often in disarray, causing family stress and conflict. People need this information. When I worked at the bank, I often encountered customers who lacked the necessary information because their parents were the only ones on the account, leading to probate issues.
Around this time last year, I kept receiving reminders about the importance of getting affairs in order. This inspired me to discuss the idea with a few friends, who agreed it was a great initiative. I decided to invite eight-10 women from the community to a meeting where we could collaboratively discuss and learn about organizing our affairs. That’s how the program started.
Perryman: You held the meeting and gathered people together because you recognized the need. What specific topics does the program cover?
Barnett: The program covers a range of topics, including wills, living wills and powers of attorney. We invite attorneys to speak about these legal documents. We also cover various types of insurance, such as life insurance and homeowners’ insurance, detailing the important details about all of these things that you should know.
Perryman: Is the program offered as a series of workshops, one-on-one consultations or online modules?
Barnett: It’s a series of workshops. We decided that in-person information sessions were necessary because while there’s a lot of online information available, much of it is presented as estate planning, which not everyone understands. The “Getting Your Affairs in Order” program clarifies what this actually involves. When people hear “estate,” they often don’t realize it includes more than just owning a house – it also covers savings accounts, investment accounts, and other assets. The workshops help people understand these aspects.
Perryman: What type of medical decisions does your program help your participants prepare for?
Barnett: The program helps participants prepare for decisions regarding healthcare power of attorney. There are several types of power of attorney, including financial and healthcare power of attorney.
Perryman: Are there other legal documents, including living wills, discussed?
Barnett: Yes, we cover various other documents. It’s important to understand which documents apply to your situation. Many people have questions about trusts, such as what a trust is and why they should consider putting their assets in one. Trusts work well for some people, but not for everyone. For example, a trust didn’t work for me because I have a homestead exemption. When I placed my condo in a trust, the trust became the owner of my property, which meant my homestead exemption no longer applied.
Perryman: At these workshops, will you provide templates or examples of the documents, and offer guidance on how to complete them?
Barnett: The attorneys who speak at our workshops explain them, and while there are online services available, most attorneys will recommend hiring them for personalized assistance.
Perryman: So, they provide an overview, and if you need help filling out the documents, you should contact them.
Barnett: Yes, exactly. One essential document discussed is the final arrangements instructions, which I believe everyone should have. This document allows you to specify your final arrangements to prevent disputes among family members.
For example, when I was growing up, my aunt was the only one who talked about wanting to be cremated, and people found it strange. The final arrangements instructions let you clearly state your wishes, ensuring that your family members respect your decisions without conflict.
Perryman: I wanted to ask how your program addresses communication between family members regarding a person’s wishes and desires.
Barnett: We include a document about final arrangements in the swag bags we give out. We felt it was important because many families face conflicts due to financial or other reasons, and people often have different opinions about end-of-life decisions. For example, in my own family, my sister wanted to be cremated. Since she wasn’t married and my mother was her next of kin, we were able to honor her wishes without needing signatures from all the siblings. This document helps ensure that everyone’s wishes are clearly communicated and respected.
Perryman: So, your program provides strategies to help communicate a person’s wishes and desires to family members, helping to prevent potential conflicts? Family disputes surrounding medical emergencies and final arrangements occur far too often.
Barnett: Yes, exactly. Reverend Barbie Harrison has a segment in the program that focuses on how to have these important conversations with your loved ones.
Perryman: Do you have any other tools or resources besides the one you talked about to help with family meetings or discussions about end-of-life planning?
Barnett: Yes, we have another document introduced at our last workshop, thanks to the Neighborhood Health Association, one of our sponsors. Their representative provided a document to record all medications and recent doctor visits. This is crucial because, when my sister, who had been taking care of my mother, fell ill, I didn’t know which medications my mother should or shouldn’t take. Moving a family member to another city and finding a new doctor is challenging. My mother was able to get medical care because of my connections, but it wasn’t easy.
Perryman: What are some of your program’s successes?
Barnett: Participants truly appreciate the information provided. Our main goal is to start the conversation and get people thinking about these important issues before it becomes too late. With so many different opinions prevalent, or in the case of blended families, where two separate family units are coming together, things can become chaotic during a health crisis. It’s not just about death; It’s also about managing care when someone is sick. People need to know how to take care of you, including managing accounts and bills if you’re unable to communicate due to illness.
Perryman: Is there a cost associated with the program?
Barnett: No, it’s free. We’ve had sponsors, so we provide participants lunch and a swag bag with various gift items and information.
Perryman: As you talked, I thought of end-of-life doulas. Are you familiar with these professionals?
Barnett: No. Do they work at home?
Perryman: They can work at home or in the hospital, but their role is to support individuals who are transitioning and their families. They ensure dignity in the dying process, help plan, organize paperwork, document wishes, and offer comfort measures. They assist with creating a peaceful environment and advocating with medical staff or institutions for the person’s needs. There are associations such as the National End-of-Life Doula Alliance (NEDA), the National Black Doulas Association (NBDA), and the Going with Grace organization. These death doulas or transition doulas provide personalized care that respects the diverse cultural backgrounds of clients, and it might be very beneficial to research their directories and resources.
Barnett: Okay, I will definitely.
Perryman: When is the next workshop?
Barnett: The next workshop is on Saturday, October 19, 2024, at the Toledo Lucas County Main Library in the McMaster Center. It starts at 12:30 p.m.
Perryman: Congratulations on this much-needed project.
Contact Rev. Donald Perryman, PhD, at drdlperryman@centerofhopebaptist.org