Palliative Care Isn't What You Think
You don't have to be dying, for one thing
“All bugs are insects but not all insects are bugs,” my father the entomologist always says.
What does that have to do with death and dying, Teej? I hear you ask.
I was talking to a friend recently who said their uncle was in palliative care, or was it hospice? They didn’t really know. And they’re not the only one - lot’s of folks are confused about these two different types of care. So let’s discuss!
In a nutshell: all hospice care is palliative care, but not all palliative care is hospice. (Thanks, Dad.)
Palliative care is particular kind of care for someone with a serious illness. The goal is to offer comfort, reduce pain, relieve suffering, and manage any side effects from other treatments.
It also addresses the whole person, so it can include nutritional assistance, counseling, and even deciding what treatments you want or don’t want. It can help you and your family communicate better.
It’s provided wherever you are: a doctor’s office, a hospital, a nursing home, or your own home.
What it is NOT is a stepping stone or a precursor to hospice. It’s not about dying; it’s about living, and even more important, about reducing suffering. People can receive palliative care when they have any serious illness and are expected to recover.
Hospice, on the other hand, IS about dying.
The focus shifts from treating or curing an illness and instead to providing comfort to the patient and their family. Because the goal is to relieve suffeting and keep you as comfortable as possible, people usually stop any treatments.
Hospice isn’t a location; it’s a way of approaching death in a way that is most comfortable for you.
You can be “in hospice” in a hospital, a nursing home, or as it often is, in your own home. It usually begins when your doctors diagnose you as “terminally ill,” meaning you have less than 6 months to live.
Not that you’ll necessarily die within that six months. President Jimmy Carter was in hospice for 22 months - almost two years! I’ve written about him before, and I have great respect for his transparency around hospice; it raised much awareness of what hospice is and how good it can be for both patient and family.
On the other hand, my mother died about 3 days after being put in hospice at home. So there’s no real telling how long someone will live.
And yeah, we could talk about whether people can decide to live or die, what motivates them, whether faith and prayer keep people alive, or whether it’s just a crap shoot - but that would take thousands of more words! It’ll make a good topic for another Death Over Drinks meetup…
Meanwhile, here is something to think about: what do you want in terms of palliative and/or hospice care at the end of your life?
Then, talk to your family and friends about what you want.
If it feels difficult or scary to you, I get it - and that’s why I’m here. I can help you through the hard but necessary conversations that ultimately will allow you to die on your own terms.
I, too, did not know the difference between palliative and hospice care. I'm a woman who lives with multiple chronic illnesses, so I guess lots of people with chronic illness would benefit from palliative care. IF they didn't freak out being told that! lol
Thank you for sharing the distinctions between palliative and hospice care. I suspect there are more people who confuse the two, rather than know the difference.