The Off-Ramp No One Told Her About

Hospice care has been around the United States since the 70s, and there's a lot of stereotypes and myths that accompany it, including ideas like hospice is just quitting.

And the way our Medicare hospice benefit is set up, you have to relinquish what's called curative care, care intended to try to treat the underlying condition in order to get a hospice benefit.

So in health services circles, we call that the terrible choice.

And it's this trade-off where you have to have one or the other.

Now, palliative care is a broad umbrella that encompasses hospice care, but a lot of other things too.

So palliative care is focused on symptom management.

You might call it comfort care.

It does a lot of different things that kind of bridge potentially curative care and hospice care.

Whereas hospice suffers from a lot of stereotypes and myths over the course of 50 years, palliative care has only become a subspecialty since the 2000s.

Under Medicare, hospice generally requires a patient to stop treatment aimed at curing the terminal illness.

They can also leave and return later if they still qualify.

Palliative care, on the other hand, can happen alongside treatment.

So this is something you could have palliative care be part of your team.

If you're looking at a situation with a serious illness, palliative care can join your team and help build things up.

And if there's a transition toward or a balance of trying to think about what you want for your quality of life, what your goals of care are, palliative care can be there at the same time as the people who specialize in giving curative care.

For example, a patient getting chemotherapy could also work with a palliative care specialist on pain, side effects, or what matters most to them at the end of the day.

Spencer says there are also resources outside of what you'd typically find in a hospital.

Death doulas are another amazing resource.

I see this work and this project is very much aligned with people working in hospice and palliative care and doulas.

These are all people trying to help you have end-of-life care that matches with your preferences as much as possible.

So doulas are non-medical experts, kind of like birth doulas.

They cover a lot of different things outside of the healthcare system.

And so they might come in and help you articulate what are your goals of care, have conversations about what's important to you.

You could work on legacy projects, writing letters to people, setting things up so that you're spending your time, the time that you have left in the ways that are important to you.