Explaining What Exactly Hospice Care Means After Former President Jimmy Carter’s Announcement

Former President Jimmy Carter has opted for hospice care at his home in Plains, Georgia. The Carter Center released a statement saying the 98-year-old “decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.”

So what is hospice care and what does it mean that the longest-living American president is foregoing medical intervention? WTTW News spoke to Dr. Joshua Hauser, an associate professor of medicine at Northwestern University Feinberg School of Medicine. He also serves as the director of the Hospice & Palliative Medicine Fellowship.

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Note: This interview has been edited for clarity.

WTTW News: What is hospice care?

Hauser: Hospice care is focused on comfort and quality of life and support for families usually within the last six months or near the end of life. It’s often not focused on more sort of illness modifying or disease modifying therapies. So, it’s really a pure focus on comfort, quality of life and support for families.

President Carter chose to do hospice at home. Does everyone have that ability or is it mostly in hospital care? What does it look like?

Hauser: So most hospice is at home. Some hospice can be in a nursing facility or other kind of long-term care facility, and then a small number can be in a dedicated hospice center or hospice unit. But the vast majority of times it is at home with visiting caregivers. In other words, a nurse, a social worker, a chaplain, a physician, a nurses aid, etc. to help with care in the home.

You’re the director of the Hospice and Palliative Medicine fellowship at Northwestern. Does that mean that there’s additional training to be a hospice provider?

Hauser: There is. So it’s a specialty that comes after your initial specialty. But what I mean by that is that you start off as an internal medicine doctor like me, and then you do a fellowship, which gives you additional training in hospice and palliative medicine. Interestingly enough, you can also start off as a psychiatrist or a surgeon or an emergency medicine doctor or a family medicine doctor, and also get further training in hospice and palliative medicine. So it’s a one- year advanced training after your initial specialization.

What can’t hospice do for someone who’s dying?

Hauser: They usually can’t reverse things because the disease is at a point where it is irreversible. President Carter has had metastatic melanoma for many, many years now, but I think that they made a decision to focus more completely on comfort, feeling like that was their priority at this point.

You can’t hasten somebody’s death in in hospice?

Hauser: No, no. I think that’s what sometimes people fear, and that’s really not part of the philosophy of the approach. It’s really to sort of understand a patient’s symptoms, understand their quality of life, understand their wives, sons, daughters. It’s about anybody around them, what some of their needs are. And it also plays a pretty important role in bereavement. So, in other words, the period after death there’s sort of built-in support that hospices provide for family members of the patients they care for during the first year after death.

When should people start talking about hospice care?

Hauser: I think the first issue is that there’s a serious illness that someone has — they have an advanced cancer, they’ve advanced heart disease, they have advanced pulmonary disease or lung disease. And the second issue is that things may be getting worse despite the therapies for those diseases. So I think that can be a time that people might start talking about a more comfort oriented approach.

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