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How The Pandemic Has Affected Patients In Hospice Care

MARY LOUISE KELLY, HOST:

One of the most heartbreaking aspects of the coronavirus is that many patients die alone. Hospice is designed to provide gentle end-of-life care, so the hospice field is working to adjust to the pandemic. NPR's Deborah Amos reports.

JANET BULL: Good morning.

DEBORAH AMOS, BYLINE: That's Dr. Janet Bull. She's the chief medical officer at Four Seasons Compassion for Life, a nonprofit hospice organization in North Carolina. Even before the governor in her state issued a stay-at-home order, she ordered her hospice staff to wear protective gear, masks and gloves.

BULL: That was challenging to be able to provide that good end-of-life care, where families are holding hands and we are there helping to facilitate.

AMOS: Her hospice patients, more than 400 over 11 North Carolina counties, had already decided against aggressive hospital care, even the few who did contract COVID-19.

BULL: The first patient we cared for in our inpatient unit was having pretty horrendous symptoms within 30 minutes of the physician caring for her. Her symptoms came under control, and we were able to let family members in. It was a good story.

AMOS: But she still died of COVID.

BULL: Yes.

AMOS: COVID has transformed hospice from masks and gloves to telemedicine for a visit from the chaplain or from grief counselors, says Edo Banach. He's the president and CEO of the National Hospice and Palliative Care Organization. He explains that hospice became a government-supported program during the AIDS pandemic in the 1980s and had to quickly adapt. Now, he says, hospice is adapting again.

EDO BANACH: Another interesting thing that's sprung up here is that some hospices are establishing COVID-only inpatient facilities, and I think it's going to grow.

AMOS: In the early days of the COVID surge, the priority for personal protective equipment for extra staff, for resources, it all went almost exclusively to hospital critical care units, wrote Charles Camosy in a scathing critique of nursing home deaths. He's a bioethicist at Fordham University. He says this fast-moving virus devastates the elderly. Patients were unprepared for critical decisions. Did they want aggressive care that often had a slim chance to save them or die without it, surrounded by family members at home or in a hospice care facility?

CHARLES CAMOSY: It's a monster ethical problem. And I wish we had focused more on, well, what is a good death look like in the age of COVID? It's not a question you hear posed very often.

AMOS: After more than 100,000 deaths across the country, he says, the question still needs an answer.

CAMOSY: I want to give someone the choice to be able to say it's more important for me to die here with my family and know I get to say goodbye to them then end up in a situation where I might be intubated, where I might be lost on a gurney in the hallway. And hospice, when done right, is just the best at creating conditions for the possibility of good deaths.

AMOS: The time for families to have a critical conversation about the end of life is before anyone gets sick, says Susan Enguidanos. She teaches at the USC Leonard Davis School of Gerontology. Prepare an advance directive, she urges, a legal document that puts care preferences in writing.

SUSAN ENGUIDANOS: If I have COVID, this is what I want.

AMOS: A conversation she had with an aging and ailing relative.

ENGUIDANOS: I mean, I had the COVID conversation with my father-in-law yesterday. And he was telling me, you know, that, no. He knows that if I get COVID, take me home. I don't want to be on a ventilator.

AMOS: It's not an easy conversation, but it's an important one, she says. Making end-of-life decisions in a crisis is much harder.

Deborah Amos, NPR News.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.