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.

Hospice and Nursing Homes Blog

Dementia Label Perceptions (Long-Term Care and Hospice Research, Alzheimer’s Video 3:41)

Many people have a need to label others. They struggle to ease the complexity of dealing with whole people by mentally putting them in a labeled box of who they think they are. They see someone for the first time and immediately begin to make judgments based on ethnicity, language, gender, religion, and other labels.

In work situations, labels can be particularly dangerous. A former school principal, I am aware that the most important influence for learning in any classroom is teacher expectations. The potential for doing damage to children is quite real when they are labeled negatively. Labels in the healthcare professions can also be damaging. Consider this research about perceptions resulting from labeling residents with dementia.

This study examined the labeling of nursing home and hospice residents, how it influenced employees’ perceptions, and how those perceptions could affect resident-caregiver interactions. Forty-three employees in various staff positions from a rural hospice and an urban nursing home were involved. Participants read a vignette based on a fictional resident’s behavior. They rated their perceptions of the behavior, indicating if and how they would report the event, and made recommendations for a possible course of action. Although the vignettes were the same, the fictional resident was labeled either as an Alzheimer’s resident in a specialized care unit or as a resident of a non-specialized long-term care unit.

Can you guess the results? If you guessed that the behavior of the resident labeled as an Alzheimer’s resident was perceived to be more problematic, inappropriate, and aggressive than the same behavior of the resident without the Alzheimer’s label, you would be right. Perceptions regarding a resident having Alzheimer’s disease were negative. Labels that interfere with impartial thinking of healthcare workers and others can be harmful to residents’ quality of life. The purpose of this post is to emphasize the importance of viewing people with dementia or any other disease as people first and not as disease labels.

In this video titled Live Outside the Stigma, Dr. Richard Taylor explains his personal life experiences and consequences of living with the myths and stigmas of dementia, probably the Alzheimer’s type.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Assisted Living Facilities Provide Hospice Care (Research, Video 3:48)

Many people have told me that they didn’t know hospice care exists in nursing homes. Even more seem surprised to learn that hospice care can be provided for residents in assisted living facilities. I can’t emphasize enough that hospice care is available no matter where a qualified person lives at home, in an assisted living facility, in a hospital, and even in prison.

What does good quality care at the end of life look life for hospice-enrolled residents in assisted living facilities? A study was done by the Oregon Health & Science University to get detailed descriptions of end-of-life care provided by medication aides, caregivers, nurses, and hospice nurses in urban and rural settings. Interviews were used to gather information. Having worked as a hospice volunteer in urban nursing homes for several years, I was interested in the results. They were very similar to what I would have expected from a nursing home or any other institutional care:

1)   The quality and nature of resident-staff and assisted living-hospice staff relationships are critical in promoting good end-of-life care for residents.

2)   Length of the resident's stay in the facility and how well staff knew the resident were associated with the quality of the resident-staff relationship.

3)   Respectful collaboration, clear communication, use of complementary knowledge and skills of staff, and shared expectations about the care were associated with positive staff relationships.

4)   Administrative support for hospice patients in assisted living facilities was important.

Assisted living facilities and hospice organizations that are committed to working together with hospice programs must both support staff, patients, and families. There is a need for more successful models of this partnering system of care to meet the needs of our growing population of older adults.

This video titled Hospice: At Home, In Assisted Living, In Hospitals relates the positive experiences of patients receiving hospice care in different settings:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Nursing Home Hospice Impact on Certified Nursing Assistant (CNA) Staff (Research, Video 1:56)

Hospice care in nursing homes continues to increase as more people become aware that hospice services are available wherever they live. Back in the 90’s when I first started hospice volunteering, many people told me they thought hospice care was only at private homes or in free-standing hospice facilities. On the negative side, there were those who thought nursing homes would get kickbacks from hospice referrals. Speculation about nursing homes receiving additional staff hours at no cost, which could lead to decreases in nursing home staffing, was mentioned.

What has happened in terms of nursing assistant staffing with the introduction of hospice care in nursing homes? Researchers at Warren Alpert Medical School at Brown University studied this process for several years with these staffing results:

“The introduction of hospice services in a nursing home did not result in statistically significant changes in nursing assistant (CNA) staffing. Instead, increases in hospice volume resulted in small increases in CNA staffing.”

As a hospice volunteer working directly with patients, I had many opportunities to observe and communicate with CNA staff members who were often first responders in meeting resident needs. Many exhibited dedication and genuine care for residents in spite of their own expressed hardships on the job such as low pay, high staff turnover resulting in increased workloads, and lack of appreciation. The following video titled I am a Nursing Assistant shares their caregiving challenges and rewards:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog