“Imagine if you’re the caregiver, and that you’re in the house. It’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”
Read More
These stories are not for everyone, but they are topics that the author believes shouldn’t remain in the silence.
End-of-life conversations can ease suffering for families, not just patients. You can start these conversations simply, like saying, “I need to think about the future. Can you help me?”
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.”
Visitor Count:
