Combating Disparity in End-of-Life Health Care with Education
When Dr. Delicia Pruitt recalls her grandfather’s dying days, there are elements about his experience she would change.
He’d expressed a desire for “full code”, a medical term meaning health care professionals should perform lifesaving procedures up to and including chest compressions, electric shock to restart his heart and intubation with mechanical ventilation, or a breathing machine that requires putting a tube down a patient’s throat.
Pruitt’s grandfather was intubated and on a ventilator for more than a year. He was moved to a different city making it difficult for family to visit as often as they would have liked. She thinks had he known what his last days would have been like, he might have made different choices.
“It was very difficult to see, and I thought, ‘he didn’t die well,’” she explained.
Empowering African Americans to Make Informed End of Life Decisions
That idea – dying well – is driving Pruitt, director of the Family Medicine Residency Program at Central Michigan University, to educate others on the options available to them at the end of their life. With a $25,000 grant from the Blue Cross Blue Shield of Michigan Foundation and additional funding from CMU Educational Partners, Pruitt has developed an end-of-life curriculum targeted toward African Americans that provides culturally relevant information about topics such as advanced directives, hospice and palliative care, wills and more.
Research shows African Americans are often unaware of options for hospice or palliative care and therefore less likely to access this beneficial end-of-life care. It’s something Pruitt observed firsthand when she started out in private practice. While her white patients often had wills and powers of attorney established, her African American patients didn’t.
“They really didn’t want to discuss advance directives,” she said. “When we started talking about hospice, there was a lot of misunderstanding.”
She said the disparity in understanding and access has many causes but pinpoints a cultural reluctance to discuss death as a main factor. A historical mistrust of the medical system attributed to atrocities like the Tuskegee study and current disparities in treatment that lead to worse outcomes for African-Americans also contributes to attitudes about end-of-life care. Pruitt believes African Americans often choose “full code” treatment because they want an assurance they will receive the same level of care as others would in the same situation.
Her goal with the educational program is to change the narrative about what it means to die well and why hospice and palliative care are worth looking at in order to have a peaceful and dignified death. She said it might seem antithetical to think of quality of life when you’re talking about dying, but that having the conversation when you’re well and can make clear-headed decisions is important.
“To have that discussion when the person is healthy and doing well gives people a chance to say what they want,” she said. “Do you want to die well? Do you want your pain well-controlled? Do you want to be around family and friends, or do you want to die in a hospital, alone? I feel like a lot of my patients didn’t die well.”
Pruitt presented the class to two churches prior to the COVID-19 pandemic and is exploring virtual ways to present the same material that would meet the project’s objectives. The class consists of a 10-minute video discussing end-of-life care followed by a physician-led discussion and question and answer session. Participants are asked to fill out a survey before and after the class to gauge how much they’ve learned. Pruitt will follow up with participants at later intervals to see if having the information helped people act on creating a will or advanced directive.
“Addressing disparities in health care is an important part of the mission of the Blue Cross Blue Shield of Michigan Foundation,” said CEO and executive director Audrey Harvey. “We’re excited to see the outcomes of Dr. Pruitt’s work and believe providing education on end-of-life care options can make a big difference for families facing difficult decisions.”