On Saturday, February 18, 2023, when the Carter Center announced that former President Jimmy Carter would be receiving hospice care at home, I was both saddened by what this decision essentially means for the former president, and intrigued by the possibility of having broader discussions about hospice and, more specifically, end-of-life doulas.
Decisions are often made unilaterally without necessarily considering what the one dying wants or needs. A respectful death involves truly listening to the dying and being open and honest with them and the family.
When done right, hospice offers Medicare beneficiaries an intimate, holistic and vital service. But sometimes pinpointing what constitutes a “good death” is nearly as difficult as determining what makes a good life, and families do not always realize when hospice is failing them.
“We can’t keep up with our waitlist,” Arnoldy says of skyrocketing interest in the program. “The last time we opened up registration, the applicants crashed our system.”
“You have to be well connected within a network of doctors or skilled in researching such matters, and that’s one possible explanation of why well-educated people are disproportionately represented in our findings.”
“The rest is up to you,” he finally said, ending the conversation for good. He didn’t have any more guidance, and certainly no more patience to talk about it. I was surprised. To me, it felt slightly irresponsible to leave all these decisions to other people.
“It’s no secret that wage gaps, discrimination and institutional racism limit Black Americans’ access to health equity. However, what’s discussed a lot less frequently is that these factors impact the way this group experiences death, too.”
VSED might not be for everyone, but it is the only chance for some to experience an end to unbearable suffering. Done with careful preparation, medical support, and compassionate caregiving, VSED offers a natural end to life.
In 2019, three community women asked to meet with me about a compelling community education concern. The spouses of these women had all struggled to use the VSED end-of-life option because our county’s only hospital, and associated hospice program, had religious affiliations and, therefore, was unable to support VSED.
After he died, Jean and her sister both looked at one other and said, “That’s how I’m going to die.”
