Why End-Of-Life Care Isn't Actually About Death, From A Hospice Doctor
Many of my patients feel that they have barely lived at all when I show up to help them die comfortably. I enter their lives and their homes as a stranger when familiar comforts are what many need. Our relationship will be one of brief and necessary intensity.
I assure my patients that it is natural to fear the word and concept of hospice, and I listen as they tell me about an aunt who died in terrible pain even with hospice, about their fear that accepting hospice means agreeing to do nothing for their father, about their worry that hospice care actually shortens people's lives.
What should hospice care actually be?
My job as a hospice physician is to identify and treat the discomfort their disease has caused. It is also to get to know patients and their loved ones, to assess how they are coping, to ensure that they have the right resources to help with everything from planning a funeral to moving through the chokeholds of grief that will unexpectedly grip them.
Some ask if I can take a family photo for them with their cellphones, and I oblige. I pray with them when they ask me to. I listen as some of them tell me about their loves, their pets, their accomplishments, their regrets. I listen also to the ones who cannot speak, who instead groan or babble, who grow quiet when I hold their hands or play them a song that their caretakers tell me they love. This is as essential to hospice doctoring as dosing medications for pain or nausea, for agitation or insomnia.
How long are patients in hospice care?
While a patient can technically be on hospice for six months, many of the patients I see die within a few days or weeks, never fully enjoying the benefits of the care we try to provide. In the United States, the median length of time patients spend on hospice is around 18 days. Though this statistic shocked me during my fellowship, it no longer does.
The term "hospice" has become so synonymous with "giving up" or "losing the battle" with a disease that it is often not presented as an option until patients are at the very end of their lives. A handful of my patients will die an hour or two after the hospice admission nurse meets them, explains hospice, and asks them to sign consent forms agreeing to hospice care. I will sign their death certificates, having barely met them and learned their names, a stranger who will attest to their departure from this world.
Yet although I am seeing a patient because I have agreed that they are approaching death, if I do my job well, what I actually encounter is the full force of their lives.