Hospice Patient Discharge (Research, Long-Term Care Story)

Hospice does not speed up death. If two terminally ill patients had identical issues, the one in hospice care would probably live longer. During my years of hospice volunteering in Detroit, Michigan nursing homes, I rarely had patients leave hospice alive.

Who leaves hospice alive? Discharges can occur when patients decide to resume curative care, when their conditions improve beyond hospice guidelines, or when hospices inappropriately use live discharge to avoid costly hospitalizations. A national study of live discharges from hospice stated that approximately 1 in 5 hospice patients is discharged alive with variation by hospice programs and by geographic regions. Connecticut has the lowest rate, and Mississippi has the highest. Not-for-profit hospices and older hospices have lower rates of live discharge.

From the perspectives of patients and family members, what are the experiences of adults discharged from hospice programs due to decertification related to ineligibility or extended prognosis? A hospice discharge research study reported that two primary themes emerged. One theme was suffering, and the other theme was the paradox of hospice discharge. Subthemes included abandonment, unanswered questions, loss of security, loneliness, uncertainty, anger and frustration, physical decline, bearing exhaustive witness, having and needing support, mixed feelings, not dying fast enough, and hospice equals life. Clearly, more study about the hospice discharge experience is needed for healthcare providers to offer appropriate support to patients and families.

People are often surprised when I speak about patients leaving hospice alive, especially when I tell them Raynell’s story. Raynell, my diabetic hospice patient with dementia, shared a room with four other patients at the nursing home. Her fourth roommate was actually an imaginary admirer named Robert, whom she loved like the devil loves holy water. One day, she surprised me with talk about leaving hospice care and the nursing home:

Raynell requested my help by saying, “I was wondering if you could help me find another apartment. I’ve been thinking about looking for a new place to stay, maybe a place closer to where I used to live. This apartment building is too noisy. Just close your eyes and listen to all the talking, buzzers, and everything. People come into my place without even knocking. They just walk right in and go through my closet and drawers. It’s not right. Three ladies even moved in with me when I wasn’t looking. Now, I can’t get them out.”

I responded, “Whoa! That’s a surprise! I didn’t know you wanted to leave here. Are you sure moving is the best thing to do while you’re not feeling well?”

“Lately, I’m feeling much better. I need a change. Even Robert (annoying imaginary boyfriend) had to leave, so you know it’s bad. But I’m very glad about that. He’s gone to live in California. I don’t think he’ll be coming back again.”

“A lot sure has happened since I visited you last week. You never said you wanted to move before or that the other people who live here bothered you so much. All this really shocks me.”

I thought about this interesting conversation.  It was the first time Raynell ever mentioned moving to an apartment and, even more astonishing, the first time she never said Robert was hiding under her bed, and she needed me to chastise him for her. Two weeks later, she was released from hospice care because her health really had improved. She moved to another nursing home near her son’s house. I guess Robert knew his time was almost up and decided to leave before he was left.

© Excerpt above from Becoming Dead Right

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

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