Saturday, September 12, 2009

My Nursing Home Patient Leaves Hospice Care

Whenever I speak to groups and mention that one of my patients was released from hospice care, audience members seem surprised. This usually happens when I tell Raynell’s story. Raynell, my diabetic hospice patient with dementia, shared a room with four other patients at the nursing home. Her roommates included an imaginary admirer named Robert, whom she loved like the devil loves holy water. Conversing with Raynell required that I drop to the floor periodically and search for Robert under her bed. This was preceded by her screaming, “Get him! He’s going under the bed!” after he (affectionately?) pinched her tingling diabetic legs. But one day, she surprised me with talk about leaving hospice care and the nursing home:

Excerpt from "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

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.”

“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 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 a while. It was the first time Raynell ever mentioned moving to an apartment and, even more astonishing, the first time she ever said Robert wasn’t hiding under her bed. 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 got left.

© Frances Shani Parker

Yes, it’s rare, but patients are released from hospice care. Some die within months of leaving, and some live at home or remain in nursing homes. Consider that with various diseases causing the need for hospice care, it is difficult to predict someone’s death with accuracy. Also, receiving quality healthcare and support from others can improve a patient's health. And when an imaginary admirer named Robert knows it’s time to leave, the patient may be moving in that direction, too.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”


  1. Dear Frances- I was frantically searching the internet looking for a answer for my mother. She is in late state COPD, her carbon levels with 18 hours of BYPAP are not coming down and the Dr recommends hospice. I live 266 miles away, am moving in 45 days and do not want her to spend the last days of her life alone OR in a nursing home, where she has fallen twice in the past couple of months, etc. I am the only child that speaks to her and am in agony about how/what to do. I would love to move her here in a nursing facility, but the DR says he highly doubts medicaid will pay for transport. Any suggestions? Also is it possible to purchase life insurance for someone like her? Thank you and God Bless. Tammi

  2. Tammi, based on the information you have given me, I urge you to go with the doctor’s recommendations, unless you want another medical opinion. By providing your mother with hospice care, you will receive an additional support team, including a medical director, nurse, nurse assistant, social worker, chaplain, dietician, a volunteer coordinator, and a volunteer. They will be able to provide you with specific courses of action you can take that are unique to your situation. They can also provide you with Medicaid and insurance advice related to your mother’s needs.

    Hospice services are available wherever you mother lives, including nursing homes, hospice facilities, hospitals, private homes, assisted living facilities, prisons, etc. Keep in mind that hospice care does not speed up death. In fact, research shows that if two terminally ill patients had identical problems, the one in hospice care often lives longer. Note that this post where you wrote to me is about a patient who improved and was released from hospice care. Of course, that is rare, but I want to assure you that all aspects of your mother’s health would be addressed.

    Hospice care increases the likelihood that your mother will have a more dignified journey during her terminal illness. She will have others comforting her along the way. They will also provide you with counsel and support you need. I wish you and your mother the best. You are welcome to write me again about how you are doing.