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
Hospice and
Nursing Homes Blog
