Recently, I encouraged a dear great aunt to go into a hospice program. Like so many seniors, she lives alone, is adamant that she wants to do so, and has caregivers who come to help. Her will is strong, her mind sharp but her body is frail. Simple activities like moving around a room are remarkably hard for her. She was hesitant at first. A lot of people are.
So what does it mean to be on hospice? For those unfamiliar, it’s helpful to know that this 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 six 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 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” — that is, a break due to difficult circumstances or physical symptoms. (Or, when they are about to pass from this life, and family or patient prefer for that not to 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, “hospice” doesn’t necessarily mean that patients will die. The plain truth is that physicians like myself 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.
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 struggle and pain. 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.