End-of-Life Phenomena (EOLP): Hospice Volunteer Research

I have been a hospice volunteer for 20 years, mainly giving bedside care to residents in Detroit, Michigan nursing homes. Most of my assigned hospice residents shared rooms with one to three other residents. During weekly visits, my residents and I have discussed numerous topics. Occasionally, conversations included end-of life phenomena (EOLP) in which they spoke about visiting or being visited by spirits. Discussions about spirits created opportunities for them to express emotions openly about death while reflecting on life. They enjoyed describing their visitors and their trips. Their detailed comments explained, not only whom they saw, but also their clothing, scenery, and pets. 

Many hospice volunteers and healthcare workers have had similar conversations with patients about these phenomena. Researched end-of-life phenomena (EOLP) surveying thirty-nine hospice volunteers revealed the following:

1) Forty-nine percent of the volunteers either had personally witnessed EOLP in their volunteer work and/or had a patient or patient's family member report EOLP to them. 

2) More than half of the volunteers agreed that EOLP influenced their religious beliefs and their spirituality in a positive way.

3) Eighty-nine percent of the volunteers indicated that they had never received any training about EOLP. Nearly all of the volunteers were interested in learning more about EOLP.

4) After completing the survey, fifty-nine percent of the volunteers shared EOLP stories they had either personally witnessed or heard. The most frequently reported experiences involved deathbed visions.

Deathbed visions have also been my own most frequent EOLP topic in conversations with my own residents. I understand that some people say these spirit sightings are medical, chemical reactions in the brain or hallucinations. I also know that others speaking from emotional, spiritual perspectives say they are angels, spirits, or ghosts who are there to connect with them. For all those reasons, I do think these sightings should be reported to appropriate healthcare workers. 

Personally, I go along with my residents’ EOLP explanations because the experiences have always been comforting and positive to them. I think about a Song of Solomon book quote from Nobel Laureate-winning author Toni Morrison: “What difference do it make if the thing you scared of is real or not?” In other words, these visions happen, and they are real to residents. Readers can draw their own conclusions:

(Below is an excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. )

“What did you do today?” I asked Rose after feeding her.

“Me? I’ve been spending time with my people. I enjoyed myself a lot.”

“Hey, that’s great. Did your relatives drive in from Chicago?”

“No, I went to heaven. It’s the nicest place, all clean and bright with beautiful scenery everywhere. I saw my family and plenty of my friends. They all wore long white gowns.”

“Wow! I guess that’s a place you’ll want to visit again.”

“Oh, I’ll definitely be going back. I’m planning to go stay there when I die. I’ll see if I can help you get in, too.”

“Thanks. I would really appreciate that.”

(It's good to have connections.)


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

Supporting Certified Nursing Assistants (CNAs)

Certified nursing assistants are usually responsible for the general care of patients in various settings. During my hospice volunteer rounds in Detroit nursing homes, I met many. They were generally first responders meeting residents’ needs. Residents frequently thought of them first when they evaluated their nursing home experience.

Because they worked closely with residents, I had many opportunities to talk with them. They seemed glad to have me there assisting my hospice patients while lightening their workload, especially at mealtimes. They shared their concerns about low pay, staff shortages, difficult work conditions, and not being appreciated.

These are two comments I have heard them express to me about their jobs at nursing homes:

1) “I love working here. It’s not perfect, but we try to work as a team. I treat my patients like they are my family. For some of them, I’m the only one they can really talk to about their true feelings. I know what I do matters.”

2) "This place is depressing. I usually have more patients than I’m supposed to, and nothing I do is enough. It’s low pay with high pressure, but I need the job. When I try to make suggestions, nobody listens. I’m really frustrated."

I found that many CNAs valued their jobs and relationships with residents during stressful situations. They made positive choices while working to improve conditions. Attitude was everything. This wasn’t always easy, especially on a daily basis or during the middle of a crisis. I have seen a CNA get slapped so hard by a resident with dementia that she almost fell. But she maintained her composure and moved on while another CNA interceded. The passion many had for what they were doing helped them overcome adversity.

Like people, all work environments are not good, and all are not bad. A work climate suffers greatly when large numbers of staff stay discontented. Nobody, including residents, benefits from a negative healthcare environment. Welcoming constructive input from all staff members, including nursing assistants, respects everyone. So does working as a team. Oral or written words of appreciation, when deserved, can go a long way in healing trampled self-esteem. An added benefit is decreased staff turnover. When the word gets around, more nursing assistants will choose a facility where they feel respected.

I celebrate everyone doing a fine job working in nursing homes and other healthcare facilities. But this post is written especially in support of certified nursing assistants who help patients, positively touch lives, and will be even more in demand in the future to assist nurses and become nurses. Thank you. I wish you all the best!

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

-->

Old Love Improving with Time (Research, Video 4:13)

Old Love

The question is asked: "Is there anything more beautiful in life than a young couple clasping hands and pure hearts in the path of marriage? Can there be anything more beautiful than young love?"


And the answer is given: "Yes, there is a more beautiful thing. It is the spectacle of an old man and an old woman finishing their journey together on that path. Their hands are gnarled, but still clasped; their faces are seamed, but still radiant; their hearts are physically bowed and tired, but still strong with love and devotion for each other. Yes, there is a more beautiful thing than young love. It’s old love." Unknown

Those quoted words sound wonderful, but does research support what they say about old love? This research examined age-related changes in emotional behavior in a sample of middle-aged and older long-term married couples over a 13-year period. Data were collected at 3 waves, each occurring 5 to 6 years apart. For the present study, there were 87 couples examined who participated in all 3 waves.

Couples were either in the middle-aged group (40-50 years old, married at least 15 years) or the older group (60-70 years old, married at least 35 years). At each wave, couples engaged in 15-minute unrehearsed conversations about an area of disagreement in their marriages.

And what were the results? For both husbands and wives, negative emotional behaviors (primarily belligerence, defensiveness, fear/tension, and whining) decreased. Positive emotional behaviors (primarily humor, enthusiasm, and validation) increased with age. These findings support theories suggesting that positive emotions increase and negative emotions decrease with age between husbands and wives.

In 2015, the Worldwide Marriage Encounter crowned Dale and Alice Rockey the Longest Married Couple of  the year 2015. They had been husband and wife for 81 years. The two met just after the turn of the last century. Their story and others in this video confirm there really is something very beautiful about “the spectacle of an old man and an old woman finishing their journey together.”

        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

LGBT Youth Support: Schools, Grandparents (Research, Video 6:04)

Lesbian, gay, bisexual, and transgender (LGBT) youth have unique needs that need to be addressed on several levels. A former school principal and current eldercare consultant, I write this post with a focus on LGBT school practices and grandparent perspectives.

Compared to heterosexual youth, research on LGBT school practices indicates that LGBT youth are targeted for bullying at school in disproportionate numbers. It cannot be stressed enough that they, like all students, should be getting their education in a supportive environment through a variety of practices and professional inservices. Bullying of LGBT students is far too common. 

In terms of correctional practices, school administrators reported the following for creating a supportive LGBT environment in schools:

1)    Having a point person for LGBT student issues

2)    Displaying sexual orientation-specific content

3)    Having a gay-straight alliance

4)    Discussing bullying based on sexual orientation

5)    Providing professional development around LGBT inclusion     and LGBT student issues

Not surprisingly, students attending schools with caring LGBT climates reported lower odds of relational bullying victimization, physical bullying perpetration, and sexual orientation-based harassment compared to students in schools with less caring LGBT climates. An added benefit was that these LGBTpractices may be protective for all students, regardless of their sexual orientation. 

Intergenerational family experiences of the lesbian, gay, bisexual, transgender (LGBT) community are often not represented during family discussions within the larger heterosexual community. These relationships are important in order to understand better how LGBT individuals function within family systems.

     Beyond school, LGBT youth have family members to consider regarding their advocacy. What about relationships between gay grandchildren and heterosexual grandparents? Grandparents generally want good relationships with their grandchildren, especially those who live near them and with whom they have frequent contact. Positive socialization is helpful and healthy for everyone involved.

Unfortunately, sometimes these relationships can be difficult, even painful. But grandparents like Glen and Linda Marks demonstrate in this video that having a gay grandchild can be an opportunity for open acceptance of who he is. After learning that their grandson was gay, they expressed their determination to "walk" with him with continuing love and support.

You can read my "10 Rules of the Education Game for Educators" here.

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

Unbefriended Older Adult Seniors (Research, Video 3:02)

Older adults who have reduced decision-making capacity and no family or friends to compensate for these deficiencies are known as unbefriended. Being unbefriended jeopardizes a fundamental concept of American healthcare. These adults require public guardians.

Available research on unbefriended older adults in Canada and the United States is very limited. In fact, no Canadian studies or reports were located. Three things we do know about them are these: Unbefriended older adults are childless or have fewer children, are more cognitively impaired, and are older than older adults who were not unbefriended. We also know that more research on them is urgently needed.

Unfortunately, the process for making decisions on behalf of unbefriended patients is complicated and varies throughout the country. An example is this case of an unbefriended hospital patient admitted with cardiac arrest. The patient suffered significant brain damage and was in a vegetative state. This case occurred in a state where, unless an unbefriended patient will imminently die despite medical therapy, all measures must be taken to prolong the patient's life. With no surrogate with whom healthcare professionals could have a goals-of-care discussion, they were obligated to continue aggressive management despite knowing it would prolong, but not improve the patient’s condition. Prolonging life included a feeding tube and being transferred to a long-term care facility.

The importance of having early healthcare discussions regarding treatment and written advance directives including a surrogate (durable power of attorney) to make medical decisions cannot be stressed enough. If you were dying right now, would you be unbefriended? Would you be protected from overtreatment or undertreatment? Dr. Eric Widera explains solutions to this problem in this video brought to you by members of the American Academy of Hospice and Palliative Medicine.

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

Wheelchair Rides: Caregiving Friendships (Research, Video 3:15)

For older adults living in institutions such as nursing homes, socializing with others can play a very important role in their quality of life. A hospice volunteer in various Detroit nursing homes for many years, I always knew wheelchair rides were a lot more than just moving residents around in mobile chairs. They provided great bonding moments that presented priceless occasions for us to learn interesting information about our personalities and pasts. Most of all, wheelchair rides gave residents opportunities to extend boundaries beyond their rooms to include other residents, staff, visitors, activities, stimulating sights, sounds and even smells. One hospice resident I had even used her wheelchair rides with me as opportunities to remind everybody that she was indeed still alive.

Quality of life, particularly social relationships, may be perceived differently according to residential settings. This research study on quality of life compared World Health Organization Quality of Life scores of elderly community-dwelling residents and nursing home residents. A sample of 207 older adults (135 community-dwelling residents, 72 nursing home residents) was evaluated. Among other conclusions, socialization in nursing homes was supported as a way to improve residents’ perceptions of quality of life.

This post would not be complete without mentioning Nat, a white man who initially expressed reluctance about being assigned to me, a black volunteer. We discussed the matter and decided to begin visitations anyway and see how things progressed. 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.

People sitting in the lobby began to expect that when Nat and I entered from his wheelchair ride, there would be a lot of hoopla over his beating the buzzer. Laughing with triumph, he enjoyed celebrating his victory. After a few weeks, however, something interesting happened. Nat proudly and jokingly started telling everybody I was his wife, totally ignoring the reluctance he initially had about being assigned to a black volunteer. He admitted to me that his feelings had changed and that he looked forward to my weekly visits with wheelchair rides. Nat had underestimated the power of wheelchair rides and socialization.

A strong proponent of intergenerational partnerships, I am happy to share another example of wheelchair ride socialization displayed in the following video. The young teenage boy named Aidan Knau is a volunteer escort at the St. Cloud, Minnesota Veterans Administration Medical Center. That’s where he pushes wheelchairs for veterans and provides a whole lot more in positive bonding.

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

Caregiver-Patient Joy (Dementia-Music Poem)

When caregivers approach patient care with win-win expectations, they can be surprised by them at any time. Meaningful conversations and feelings drift into a now/here place that are not forced, but still joyous and explosive moments. Many times the experiences are subtle, quiet with a settled satisfaction that brings whispered gifts of personal knowing about life lessons that strengthen the bond between caregiver and patient. One reason some people assume caregiving is always depressing is that caregivers don’t share their joyful caregiving moments enough with people who are unaware of powerful scenarios that occasionally occur between caregivers and patients.

I recall a few of the very special moments I have known as a bedside hospice volunteer caregiver in Detroit nursing homes. This poem describes one of my favorite caregiving moments. I had a very challenging patient whose name was Katherine. She usually lay in bed sleeping or looking up at the ceiling. I couldn’t tell if she was bored, unhappy, mellow, or all three. Rarely speaking, she never sat up on her own or walked. We mostly stared at each other while I talked. But I kept trying to think of ways to climb over the walls that separated us. That was my challenge as her volunteer.

Knowing that Katherine had been active in her Baptist church in the South at one time, I decided to use my CD player (old days) with headphones to help her enjoy music sung by Mahalia Jackson, whom many hail as the greatest gospel singer ever. After reading this poem, you’ll understand why it’s one of my favorite caregiver-patient joys and why I still smile every time I read it. If you have a special caregiver-patient moment of joy, share it so others can smile with you.

                          Sounds of Ecstasy

Headphones frame your head.

You look at me, your volunteer,

wonder what they can be.

Mahalia Jackson’s song erupts,

“When the saints go marching in...”

Sleepy eyes widen like popped corn.

“It’s a CD player,” I say.

Your mental video rewinds

through time from the nursing home

to an Alabama church service

where bodies rock to music.

I join you clapping with the choir.

Your stiffened hands move

with a powerful energy that rises

like a resurrected hot flash.

“It’s wonderful,” you whisper.

Mahalia responds singing,

“Walk all over God’s heaven...”

I picture you joking with Death

when it’s your time to holy dance

to the Other Side of Through.

Mesmerized by the music,

you soak in every song.

A CD player exhilarates you

with sounds of ecstasy.

Such an easy thing for me

to bring, but before I leave,

you say you love me twice.

                  © Frances Shani Parker from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes (an original poem after each   chapter)

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