By Paul V. DeMarco
Guest Columnist
As a general internist who also does hospice part-time, I have been interested in Jimmy Carter’s experience since he entered hospice in February of 2023. When I read the news, I expected he would die in a few months. But more than a year and a half later, Carter is still with us, and he is still imparting wisdom.
Public figures such as Carter help us understand aging and dying in a way our close family members often can’t. Most of us see our aging relatives frequently enough that their decline is gradual and sometimes invisible. But our connection with the famous is generally more intermittent. I have three sets of mental images of Carter – the handsome Georgia governor-turned-president with the endless smile, a slightly older but still vigorous 60-something climbing on roofs with Habitat for Humanity, and the most recent image of a ghostly centenarian being wheeled into his wife’s funeral.
A lucky few of us will live as long as Carter. But if we do, we are guaranteed to undergo that same decline. Some people still die suddenly, but most of us senesce. Like old cars, we roll along on wobbly tires, faulty suspensions, and sputtering engines until one day, the wheels stop turning.
Carter’s choice to enter hospice and announce it publically was a final act of service to his country. In choosing hospice, he acknowledged that he was near death, something that is difficult but essential. I have seen much unnecessary heartache in homes where everyone knew death was coming but no one was willing to admit it.
Carter’s tenure in hospice demonstrates that hospice is not a place. It is a type of care which is rendered almost exclusively in a residential setting, either someone’s home or a nursing facility. There are hospice houses for the small minority who prefer not to die at home, but most don’t want or need them.
Without hospice, dying can be a daunting task. Most of us are only closely involved in a few deaths in our lifetimes, and we get only one chance at our own death. There is a steep learning curve. Having caring and competent help through dying can make what is always a sad and difficult experience worlds easier.
Every family in hospice is surrounded by a circle of loving support. The team that cares for them always includes a physician, a nurse, a social worker and a chaplain. It can also include an aide if needed. Hospice aides are sometimes the most important part of the team, since they provide intimate, hands-on care that physically expresses the love the rest of the team has for the patient. My hospice team meets weekly to discuss our patients. During that meeting, we discuss how to best manage their symptoms such as pain and shortness of breath, and also how to comfort and sustain families through their loved one’s dying process. Although the patients’ needs are paramount, those of the caregivers are also always in focus.
Carter is not unusual in defying his physicians’ prognosis. Their assessment in February 2023 was that he would die within six months, which is one of the admissions criteria for hospice. However, prognosis is as much an art as a science. In a career of estimating prognosis, I have missed the mark many times. Sometimes patients enter hospice with a prognosis that seems months long but die quickly and unexpectedly. In a few cases, they improve or stabilize to the point that their prognosis is no longer less than six months, and they are discharged.
I tell medical students who rotate through my office to consider hospice sooner than later when they begin their own practices. Waiting until the last week of patients’ lives to accept they are dying creates a chaotic end. Hospice rushes in, the nurses do their best to relieve symptoms and educate the families about what’s coming, but patients are gone before anyone is prepared.
Hospice works best with long stays like Carter’s. When he dies, there will be no chaos. At the very end he will comfortable and unconscious. His family will be ready. They will have been able to say bittersweet goodbyes and express all their love and gratitude. There will be no hurrying, no regrets, nothing left undone or unsaid. Whatever your political leanings, whatever you thought of his presidency, we can all celebrate Carter’s extraordinary life and find inspiration in his courageous death.
A version of this column appeared in the November 20th edition of the Post and Courier-Pee Dee.
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Paul was a bit concerned that this post comes so soon after another that featured a photo of Jimmy Carter, although he wasn’t the focus of that piece.
Paul, you need never apologize to me for writing about Jimmy Carter. Anyway, that last post wouldn’t seem so recent if I were posting at a normal rate, which I definitely haven’t been. I mean to address that, as time allows. Of course, I also mean to catch up on email that is backed up to mid-summer. We’ll see which happens first.
To offer my quibbles: I don’t know whether we all would be “lucky” to live to 100; I suppose it depends on our individual circumstances. Personally, I hope you’re right, in your case and mine. And everyone else’s. I also don’t think I’d describe Jimmy back in the day as “handsome.” He has many virtues, but I’m not sure that’s one of them. Great smile, though.
Now, to the point of your post: Thank you. You address something everyone needs to know more about. We put my father into a hospice program at the very end of his life. I don’t know what we would have done without it.
I confess that, contrary to your advice, we didn’t involve hospice until the last week of his life. I had no idea that the end was so near until a physician told me that very bluntly. Within a day, we had called in hospice. But as short a time as it was, it proved an invaluable blessing…