By Paul V. DeMarco
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 8th edition of the Florence Morning News. Dr. DeMarco’s opinions are his own and do not necessarily reflect those of McLeod Hospice.