Former President Jimmy Carter continues to teach us how to age with grace and meaning. I blogged previously about his going on hospice back in February. Now, six months later, he is still alive and receiving hospice care at home.
Three lessons we can take away from this phase in his life:
-
Hospice care can continue longer than six months
To qualify for hospice under the Medicare benefit, a physician has to say, “This patient has, at most, six months to live if the disease runs its normal course.” What happens if the prognosis is wrong and the patient is still alive after six months?
Note the caveat, “if the disease runs its normal course.” Some patients do live longer than is expected. In these cases, the hospice can re-certify that the patient still appears to have six months or less to live.
Some diagnoses are very difficult to guestimate the number of months a patient may have left. For instance, cancers are easier to give a prognosis than dementias. Doctors just do the best they can.
50% of hospice patients are on hospice care for 18 days or less.* 25% receive care for just five days or less. But there are outliers on the long end, with 10% on service for more than nine months. So, Jimmy Carter’s six months does happen more often than you might think.
-
Hospice care is primarily delivered in the place of residence
Carter home in Plains, Georgia. Photo: Library of Congress
Many people think hospice is a place you go to die. Not true. Hospice is a concept of care. 98% of hospice care is delivered in the patient’s residence, whether that is a private home, an assisted living facility, or a nursing home.
A recent Washington Post article gave a window into life in the Carter home now.
“Jimmy Carter is often out of bed first, waiting in his recliner for his wife to emerge. ‘Rosalynn comes in the room and makes a beeline for this chair and bends over and kisses him,’ said Jill Stuckey, a close friend. They spend many hours sitting side by side.”
-
Families usually provide most of the caregiving for hospice patients
Place: Nasarawa North, Nigeria; Feb. 15, 2007; Credit: The Carter Center
Many families are surprised that hospice does NOT routinely provide round-the-clock care. The family must provide the bulk of the care. Only 1% of hospice dollars go to what is known as “continuous care,” meaning round-the-clock.
Of course, the Carters have the resources to get the best care at home. They have other perks too. The Secret Service gave the couple a ride to watch the Fourth of July fireworks in their hometown.
Interestingly, Rosalyn Carter has had a passion for providing support for family caregivers. When The Carter Center announced that Mrs. Carter was diagnosed with dementia, they commented, “As the founder of the Rosalynn Carter Institute for Caregivers, Mrs. Carter often noted that there are only four kinds of people in this world: those who have been caregivers; those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Thank you for your service
The Post asked people who knew them what makes the Carters keep going. “Gerald Rafshoon, who was Carter’s White House spokesman, and others believe a key reason the Carters keep going is that neither wants to leave the other.”
The Carters have lived a life of service and continue to provide an example of how to approach the last days. Thank you, Jimmy and Rosalyn!
_______________
*Statistics in this blog came from the National Hospice and Palliative Care Organization’s “Facts and Figures, 2022 Edition.”
________________________
Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.
Two months after he died, Ernest Becker won the 1974 Pulitzer Prize for General Nonfiction for his book The Denial of Death. I guess, since he was dead, he was not a winner, but his book was.
I’ll get to Becker’s deathbed below but first a few quotes from his classic. Note that Becker wrote in 1973 just as we were becoming aware that we no longer refer to all humans as “man.” I know better now but I will let his original words stand.
Soon after The Denial of Death arrived in late 1973, Sam Keen, one of the editors at the prestigious Psychology Today magazine, called Becker’s home hoping to set up an interview. Keen explained how the deathbed interview came about: “I called his home in Vancouver to see if he would be willing to tape a conversation. His wife Marie informed me that he had just been taken to the hospital and was in the terminal stage of cancer. The next day she called to say that Ernest would very much like to do the conversation if I could get there while he still had strength and clarity. So I went to Vancouver with speed and trembling, knowing that the only thing more presumptuous than intruding into the private world of the dying would be to refuse the invitation.”
When I first walked into the home, I sat alone with the wife in the living room. She was very comfortable talking about her husband’s impending death. I asked her, “What is all this about not wearing our pins or talking about death? Does your husband know he is dying?” She said, “Oh, yes, he knows he is dying.” I asked, “How do you know he knows?” She responded, “Because he asked me.” I asked how she responded to him and she had told him, “Not while I’m around.”
Can we know what God wants? I was drawn to this story reading the pleas for people of faith to pray for a miracle when one could read between the lines and understand that this man was dying.
The family saw this as a sign of God’s intervention. The skeptic might say, “God did not decide the patient should not die during that code. Human intervention went against what seemed to be God’s plan.”
May 7th, Update! “The doctors are continuing to try and prepare me for the worst. And I continue to explain to them that [we] are people of faith and that our God has the final say. I am not in denial about what’s happening to him or blind to what the medical reports say…. I just know that the God I serve is greater than any infection and more powerful than any organ failure.”
As I have done for the last 25 years, I quickly opened the most recent annual 
“If there is a meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.… Suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.” Viktor E. Frankl (1905-1997) Holocaust survivor and author of Man’s Search for Meaning
For a situation in which you have no control: “No problem, there is nothing you can do about it.” For a situation in which you CAN do something about it: “No problem, take steps to figure it out.”
Update our advance directives. I wrote a blog recently about 
Continue to gather my “memoir” for my kids and grands. I wrote a 
I posted a 
It makes no sense that hospice would want to hasten a patient’s death. The more days the patient is on hospice, the more reimbursement the hospice receives. It is totally against their financial interest to hasten death.
Many studies confirm that hospice patients live longer than nonhospice patients suffering from the same disease. 