Hospice Volunteer-Patient Wheelchair Rides

In my book “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” I discuss wheelchair rides with my hospice patients. These rides provided great bonding moments. They brought patients in contact with the outside world and provided priceless occasions for me to learn interesting facts about their pasts and their personalities. They gave patients opportunities to extend boundaries beyond their rooms to include other patients, staff, visitors, activities, stimulating sights, and sounds.

A patient named Nat had a wheelchair-riding contest with himself every time we returned to his room from outdoors. He briefly pushed his wheelchair fast to beat the door buzzer that went off when we entered from the porch. This was a race he always won. He never tired of playing this game or bragging about how fast he was every time he won, as if he had hit a home run. People sitting in the lobby began to expect that when we entered, there would be a lot of hoopla over Nat’s beating the buzzer. Laughing with triumph, he enjoyed celebrating his victory and telling everybody I was his wife. This came from a white man who initially expressed reluctance about being assigned a black volunteer.

One day outside in the parking lot, I was taken aback when a patient named Gail explained, “I lived here in this nursing home on the fifth floor for years. Look up there. That open window on the corner is where my room was. I used to look out that window and see my car. I’d walk around on all the other floors and talk to people. Everybody here knows me, except the new people.” It never occurred to me that she had been in the nursing home so many years. I thought she had come after she was diagnosed as a hospice patient. I had wondered why she was so well known on every floor. A nurse confirmed her story later. Even as her memory faded, Gail still had a living history there that tapped her on the shoulder, whispered in her ears to remind her of who she had been and what she had done as a more independent woman.

Sharing time with patients on wheelchair rides, I sometimes felt like I was watching them perform a dance of seven veils as they gradually revealed new layers of interest about themselves. And because volunteering is such a win-win experience, I also learned a lot about myself. In every way, we were dance partners.

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

Sperm Retrieval From Terminally Ill or Recently Deceased Patients

Requests for sperm retrieval from terminally ill or recently deceased patients continue to increase along with controversy. Major reasons for this increase are the success and acceptance of techniques that assist reproduction such as in vitro fertilization. These requests are accompanied by several concerns regarding legal, ethical, and financial issues. Two areas of controversy involve consent for the retrieval of sperm and the validity of family consent. Obviously, family members and healthcare providers need some form of medical protocol to resolve the ongoing controversy that is not going away.

Some feel that men themselves, particularly those about to get married or enter into a similar relationship, can resolve problems related to consent by addressing retrieval of their sperm in advance in the same way a living will is handled. By documenting their wishes before a need occurs, sperm retrieval can take place during the terminal illness or recently after death. This research by the University of Maryland Medical Center examines sperm retrieval from terminally ill or recently deceased patients.

What do you think about this ongoing debate?

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

Nursing Home Compare Report Card Research and Nursing Home Tribute Video-1:53 mins.

The Nursing Home Compare report card, published by the Centers for Medicare and Medicaid Services, reports results of nursing home inspections that measure whether Medicare or Medicaid certified nursing homes meet minimum standards for a particular set of requirements. Do these report cards really impact improvements in nursing homes? A study by the University of California examined this by conducting a survey of over a thousand randomly selected nursing home administrators.

Survey results indicate that the report card does serve as an incentive to improve facilities. Most nursing homes reviewed their quality report card scores regularly and have made efforts to improve. Homes that were performing poorly were more likely to improve after the scores were published. The Nursing Home Compare report card seems to be serving a good purpose by encouraging nursing homes to improve.

Keep in mind that deficiencies that are not reported by the nursing homes are not reflected on the report card. Some feel that the reports should be more detailed. Results of inspections must be available onsite for public review. When looking for a nursing home, the report card should be used only as one part of the search. Several visitations to nursing homes and asking questions of concern are important before making decisions.

You can read more here about this study on the Nursing Home Compare report card.

This video titled “Nursing Home Heroes - a Tribute” celebrates the often unsung staff heroes in our nation’s nursing homes.

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

Preparing for the End of Life: Doing What We Say

An eldercare consultant, I often witness the contradictions many people make regarding end-of-life preparation. Therefore, it was no surprise when I read the results of the “South Dakota’s Dying to Know” statewide survey about end-of-life concerns. South Dakota surveyors wanted to gain understanding of attitudes, advance planning, knowledge, and preferences residents had about end-of-life issues. Surveys were sent to 10,204 randomly selected households. These are the results:

1) Most respondents said preparation for the end of life was very important, yet far fewer had actually taken steps to ensure their end-of-life wishes would be known or honored.

2) Most people did not want artificial hydration/nutrition at the end of their lives, preferred to die at home, and harbored misconceptions about pain; yet, most had not engaged in conversations with their physician, minister, or lawyer about these issues.

3) While some adults were unfamiliar with hospice care, when provided with a definition, a majority indicated that they would want hospice care if they were dying and preferably in their own homes.

Doing what we say we want is an ongoing problem when it comes to end-of-life preparation. Like most people, many South Dakotans have end-of-life preferences that they have taken no actions to implement. These results reinforce the continued urgency for patient conversations initiated by doctors and other healthcare workers, not only with the elderly who are near the end of their lives, but with all patients. More discussions by family and community members are also needed to bridge that long-standing gap between what we say and what we do.

You can read more here about"South Dakota's Dying to Know" statewide survey.

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

Video Poem: “Living Colors” (Nursing Home, Staff Shortage, Poor Vision, Alzheimer’s Disease, Hospice) 2:56 mins.

“Living Colors” is one of sixteen original poems included at the end of each chapter of "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” With poems, stories, and general information, "Becoming Dead Right" explores urban nursing homes, hospice care, caregiving, dementia, death preparations, and bereavement. Strategies for improving eldercare and nursing homes are examined.

This poem was inspired by one of my hospice patients who had Alzheimer’s disease and poor eyesight. More sight problems could be corrected in nursing homes if residents received vision care regularly. My patient needed assistance to eat, but there was a staff shortage that day. Staff shortages in nursing homes negatively impact patients across the country. Using her fingers, she started feeding herself. I arrived to find her with food smeared around her mouth. After wondering what that experience might have been like for her, I wrote this poem:

Living Colors



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

What Do Young Adults Think About Hospice and Home Death?

We spend so much time discussing hospice and seniors, we may not be aware of young adults’ opinions about hospice or home death. Why are their opinions important? Hospice care impacts families, not just terminally ill patients. Young adults need education on death-related options that are available for their loved ones and for themselves.

The Department of Psychology at the University of Alabama did research exploring preferences of young adults. This study examined what influenced 1,035 psychology students’ opinions about hospice and home care. The sample was 66% female and 60% Caucasian, with females having more knowledge of hospice, more positive opinions about hospice, and a higher likelihood of recommending hospice.

Regarding home death, Caucasians had a more positive opinion of home death than African Americans. Individuals describing their prior experience with the death of a loved one as negative had a more positive opinion of home death than those with no prior experience or a non-negative experience.

What this study made clearer is the wide range of opinions young adults had about hospice and home care, particularly in terms of gender and race. In addition, a large amount of neutral responses indicated the significant potential for influencing more young adults’ opinions in support of hospice if they receive more hospice education.

You can read more about this research on young adults’ opinions on hospice and home death.

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