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.
The lawsuit does not attack the right of patients to access medical aid in dying, which is the heart of the bill. Rather, it challenges provisions of the law that require providers to inform patients of the availability of medical aid in dying, and to refer those patients to a willing provider if the patient’s primary provider is unable or is unwilling for any reason.
“They made the end of his life horrible and painful and humiliating,” Elaine Greenberg said. “What’s the sense of having a living will if it’s not honored?”
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.”
A “good” death is one in which you exert maximum autonomy over your end-of-life journey. Here are some checklists for what needs to be done.
“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.
Recognizing the importance of psychosocial factors to those considering a hastened death led FEN to more explicitly recognize the importance of psychosocial factors when evaluating an applicant’s medical records. By making psychosocial factors more explicit in our criteria, we honor what truly matters to those who reach out to us.
I was amazed how life could be prolonged with multiple surgeries, toxic chemotherapy, antibiotics, and tube feeding. Quality of life, pain, cost, and suffering? Rarely discussed. I kept saying to myself, “There must be a better way. But what?”
