乌鸦传媒

Recently, I encouraged a dear great-aunt to go into a hospice program. She is childless, and like so many seniors she lives alone, is adamant that she wants to do so, and has private caregivers who come to help. Her will is strong, her mind sharp, but her body is frail. She has been afflicted by injuries and subsequent chronic pain. Simple activities like moving around a room are remarkably hard for her.

She was hesitant at first. A lot of people are. The word "hospice" carries enormous gravity.

So, what does it mean to be on hospice? Even for healthcare professionals who may be intimately familiar with the term, a few reminders are in order. First, it's important to remember that hospice doesn't mean that patients stop receiving medical care. It simply means that a patient's medical condition makes it likely (not certain) that they will die within 6 months of initiating hospice care. While in hospice, medical care is focused more on patient comfort and on their enjoyment of life rather than on attempts to defeat their ongoing medical conditions.

Hospice also means that us physicians, nurses, and social workers are available to help make the end of life a little gentler, a little kinder, for patient and loved ones alike. Hospice workers can provide many resources for patients in their care, including counseling. For those on limited incomes, hospice can pay for necessary medications, medical supplies like briefs or bandages, and can even offer in-home visits from hospice workers on a regular basis and as needed.

Hospice doesn't require that a person leave their home and go somewhere else. However, that can be an option when patients, or their families, need what's called a "respite" -- a break due to difficult circumstances or physical symptoms. (Or when they are about to pass from this life and the family or patient prefer that it does not happen at home for various reasons.) Physicians who work in hospice can even admit patients to the hospital for "symptom control" as their disease processes worsen.

Patients on hospice are not subjected to assisted suicide. Furthermore, a person on hospice can actually revoke their status at any time and can go off of hospice; then they can come back to the program as needed. Those who work for hospice companies are experts at explaining the ins and outs of the various programs that exist.

Finally, there are patients who actually "graduate" from hospice and return to better health and function -- which is to say that "hospice" doesn't necessarily mean that patients will die. The plain truth is that us physicians are not that great at predicting how long someone will live with a given condition. Likewise, sometimes patients are in hospice programs because the severity of their condition makes death more likely, but not inevitable.

I am not trained in hospice or palliative care. In fact, as an emergency physician I am situated 180 degrees from that world, since my daily work more commonly involves the immediate treatment of illness or injury, with a goal of survival and function.

But I have dear friends and colleagues who are experts in the field. Furthermore, no small number of my fellow emergency physicians are changing careers, or adding skills, by doing fellowships in hospice and palliative care. It must seem unexpectedly life-affirming after the chaos and sudden, tragic losses of our daily work in the emergency department.

Of course, I have seen frustrated, overwhelmed physicians default to the idea of hospice in the very old and sick with complex, likely terminal illness. I have heard them say, "Well, he just needs to be on hospice. Have you talked about that with his family?" This is oft born of exhaustion. But it threatens to make hospice into a diagnosis itself, or a side-room where we park the difficult or hopeless and move on to "what matters."

However, I believe that kind of "resignation" is the wrong way to view the hospice decision, because pain relief, kind words, and time with loved ones are their own prescriptions and procedures. Hospice does not represent a failure of the system, or of our science or profession. It is a merciful extension of our admittedly limited capacities. Seen properly, it is a triumph of our way of practicing medicine because those suffering great sorrow are given incredible dignity.

My great-aunt is 94 years old. She has lived independently for almost her entire life, and has always been elegant and in charge. To this day she manages her own money. And she insists on a bit of makeup when she goes out.

There's no reason that her life, so full of joy and agency, needs to be lived at the end in unmitigated struggle and pain. And with her fears about hospice allayed by her hospice nurse, she can continue to live her best life until her end.

That's a gift for sure.

P.S. As you likely know, the word "hospitalist" denotes a physician who works full-time in a hospital doing admissions and inpatient management. This is the trend for most inpatient care these days. However, "hospitalist" sounds remarkably like "hospice," and I have had to clear that up on several occasions. Be sure to do the same for your patients.

"It appears that you have a serious pneumonia. I'm calling the hospitalist."

"What? You're calling hospice?"

"Uh, no. Allow me to explain..."

A version of this piece originally appeared in the SC Baptist Courier and on Leap's blog, .

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