The Op-Ed Page

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 20^th edition of the Post and Courier-Pee Dee.

The Op-Ed Page

By Paul V. DeMarco
Guest Columnist

In a scene from the television series Doc Martin, a scathingly curmudgeonly English surgeon turned primary care doctor, he is visited by an anxious preadolescent girl and her mother for the daughter’s minor complaint. After being given a cursory exam, the girl asks, “Am I going to die?” Doc Martin stares at her incredulously and retorts in hilariously untherapeutic but unassailably truthful fashion, “Yes, we all die.” The girl begins to cry as Doc Martin moves on to his next patient.

There are essentially three ways to approach Doc Martin’s response: full denial, full acceptance, and a usually unhappy middle ground. As a physician who spends part of his days seeing hospice patients, I have seen all three up close. This has led me to the conclusion that one of the most important decisions we can make in life is how we are going to conceive of our deaths. The meaning of life, said Kafka, is that it ends. So it is profitable that each of us have a reliable concept of where we are going.

When I talk about this subject with medical students, I don’t recommend a particular path (although, if asked, I tell them my Christianity frames my approach to death). Instead, I stress to them that they must find a path, through organized religion or some other framework, that provides them a way of understanding life and death. It is much easier for physicians to engage with patients and families about life-threatening illnesses if we have decided what happens to us when we die.

Over my thirty years of practice, I have seen hundreds of patients die. Each death is a blow, especially the unexpected ones. But when there is time to prepare, death can be beautiful. Such deaths require planning and support. That support is often in the form of hospice. That’s why I am so glad that Jimmy Carter chose to make public his decision to enter hospice care. Although his presidency was turbulent and his leadership uneven, his post-presidency has been remarkable, easily one of the best presidential second acts in American history. His choice of hospice will be his last exemplary act.

Hospice provides patients and families a much-needed embrace. We surround the patient with a team of experts who understand how human beings die. Dying can be hard work, as can watching a loved one succumb. It can be overwhelming without enough help. Having hospice team members to nurture and guide you can be shelter in the storm.

No other medical discipline is more rigorous in their team approach than hospice. Every patient is seen in their home by a nurse at least once a week, often more. Each team has a social worker and a chaplain who visit monthly or more if the patient wishes. The team member that is most appreciated is often the hospice aide who bathes, dresses, and provides other personal care to our patients. Their intimate, loving care of patients as they wash and reposition a frail human body is a balm for both the patient and the caregiver. Hospice volunteers are available to sit with, talk with, and read to patients, providing caregivers a brief respite. The team is led by a physician who provides oversight and visits patients when needed.

Choosing hospice is a recognition that death is near, which for some is a difficult bridge to cross. Those patients and families who approach death with fear and denial may, in so doing, deprive themselves of a rich and sustaining hospice experience. If you visit your primary care provider and think hospice might be appropriate for yourself or your family member, please ask (the criteria is a prognosis of six months or less). Some providers are hesitant to make a referral without a signal from the family.

Sometimes death comes quickly and hospice is not feasible. But in most cases, death can be anticipated and hospice can be called months in advance. This is the setting in which hospice works best. When the team members visit and call week after week, they become members of the family.

One of the ironic things about working in hospice is the disposition of my fellow team members. You might assume that people who work with dying patients all day would be in a permanent state of melancholy. However, the opposite is true. Perhaps there are some cynical hospice workers out there, but I don’t know any. Understanding death, it turns out, is key to enjoying life. At our weekly meeting there are often tears, but there is also laughter as we relate stories of funny things that team members, family members, or patients have said and done.

I grew up thinking that a deathbed was a place for hushed tones and whispering. But my team, my patients, and my families have taught me that the end of life is a profound experience to be savored and which can hold every emotion from intense sadness to side-splitting amusement. One of life’s sweetest moments is hearing a family member tell an amusing story about a dying patient which ends with the gathered doubled over. That kind of laughter is precious, for we know that our loved ones won’t be around to hear that story being told on them again.

So I encourage you, figure out what you believe about death. It will help you live better. And at the end, choose hospice.

A version of this article appeared in the March 8^th edition of the Florence Morning News. Dr. DeMarco’s opinions are his own and do not necessarily reflect those of McLeod Hospice.