How to Be a Great Hospice Volunteer

How to Be a Great Hospice Volunteer 

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

1)   Remember why you serve.

There’s a reason you feel compelled to enhance lives of the terminally ill. Cherish that inspiration. Move forward committed to an amazing and rewarding healthcare adventure.

2)   Believe it’s all win-win.

Providing end-of-life service is a privilege, not a calling to be a savior. You and those you support come together in relationships of mutual healing and growth. Honor your win-win journey.

3)   Be present.

By all means, show up. But be present with patients after you arrive. Evaluate appearances, behaviors, surroundings, and interactions with others. Listen with your heart. Even silence speaks. Really try to understand living from their perspectives. Focus on advocacy for improving their quality of life.

4)   Try other doors.

Patients will have challenges such as dementia that may not respond to your usual front-door communication. Try other doors and even windows. Obstacles are enrichment opportunities in your partnerships with patients. Touch, music, pictures, stories, and fantasies are a few entry points. Let patients help you navigate your way into their world.

5)   Know your piece in the puzzle.

Adherence to rules of protocol and professional ethics should be routine. Be aware of boundaries such as confidentiality regarding yourself, your patients, and their loved ones. Follow guidelines of your hospice organization, and seek help when needed.

6)   Untie your knots.

There may be times of doubt, confusion, sadness, and guilt. These are normal knots of the caregiving process. Untie them by seeking support for your total well-being. Maintain proper rest, nutrition, exercise, and balance in your life. Do your best. Don’t be surprised when you discover reasons to kiss yourself.

7)   Spread the word.

Be knowledgeable about hospice and palliative care. Share information so others can benefit from these specialized areas of healthcare. Encourage involvement in hospice and palliative care career and service activities.

8)   Pick up a turtle.

If you see a turtle sitting on a fence post, you know somebody helped to put it there. Be on the lookout for turtles aiming for fence posts. Be a role model for other volunteers. Participate in organizations, conferences, workshops, and discussion groups where you can share best practices while learning new ideas.

   

9)   Write death sentences.

Death will come no matter how often you avoid it or wrestle it to the ground. Have your advance directives, finances, and property in legal order. Urge others to do the same. Don’t burden loved ones later with important decisions you can record now. As you unfasten yourself from this life, be satisfied knowing your death sentences will be carried out according to your wishes.

  

10)  Expect rainbow smiles.

Rainbow smiles hug you so tightly you can feel ribs of joy press against your essence. Hospice volunteering provides ongoing moments for you to positively impact lives. When you make those connections happen, rainbow smiles will come.

© Frances Shani Parker

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

Sexuality of Older Adult Residents: Nursing Staff (Research, Dementia Video 3:09)

“You just made me throw-up in my mouth a little.”

“How about old people just stop having sex?”

These are a few of the negative stereotypical responses, including “funny” photos of diapered seniors, that I received at a social media site. Some are too vulgar to print here. I was attempting to initiate an intelligent discussion on the life-threatening topic of older adults and the prevention of HIV/AIDS. No one took this matter seriously. Disgust and ignorance are still perpetuated by many regarding adults having sex during their senior years.

Sometimes healthcare workers also reflect these biases, particularly regarding older residents with dementia. Examples are discomfort, denial, and other reluctance by some staff members when they are confronted with the sexual behavior of older residents in nursing homes and long-term care facilities. A study involving an extensive search of electronic databases of nursing staff and reported in the International Journal of Nursing Studies revealed the following:

1)   Nursing staff shows rather positive attitudes toward later-life sexuality.

2)   The extent of the staff’s knowledge regarding sexuality in the aged seemed to be very limited.

3)   Staff caregivers hold rather conservative attitudes toward sexuality of institutionalized elderly.

4)   Responses to residents' sexual behavior were influenced by the nursing staff’s own level of comfort related to sexuality issues and the culture within the institution where they work.

More research and education programs are needed on this topic in order to foster positive attitudes about sexuality of older adults. This video titled Freedom of Sexual Expression presents sexual expression as a basic human right for all residents, including those with dementia:

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

A Nursing Home is Like a School: Person-Centered Culture Change (Video 3:06)

I started hospice volunteering in Detroit nursing homes while I was a public school principal. It didn’t take long before I observed that nursing homes and schools have several important similarities. Both have cultures that impact people in institutions. A paradigm shift in how some of these institutions are often perceived, not only by the public, but also by those who work in them, is long overdue. This needed transformation is often referred to as person- centered culture change, a movement that focuses on values and practices that respect the input of everyone involved with the institution. Through the eyes of an educator, I will mainly address culture change regarding residents.

In order for a person-centered climate to fully enhance quality of life in nursing homes and other residential institutions for older adults, residents must have experiences similar to what students should have in schools. Like students, residents must first know that the nursing home is a real “home” where they are welcomed and cherished at all times. They must feel that their environments are safe, that trustworthy employees care about them and listen to them with their hearts. Residents must know that their progress as individuals with specialized needs is the primary motivation for everything that goes on. Those with dementia should be challenged to learn new skills in non-threatening ways.

Residents must know that the personal histories they bring matter. These life stories help create who they are, not labels used to judge them and put them in stereotypical categories during their later years. They need ongoing encouragement to use their strengths in productive ways to improve their self-esteem and enhance lives of others. Their talents and accomplishments should be shared with the larger group so they can be appreciated and praised. Finally, their “graduations” (deaths) should be recognized as revered events.

For many institutions, person-centered culture change may seem overwhelming. But the rewards are immense when sincere efforts begin with everyone’s ongoing commitment to succeed. 

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

Ten Steps to Being a Great Hospice Volunteer

Ten Steps to Being a Great Hospice Volunteer

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

1)   Remember why you serve.

There’s a reason you feel compelled to enhance lives of the terminally ill. Cherish that inspiration. Move forward committed to an amazing and rewarding healthcare adventure.

2)   Believe it’s all win-win.

Providing end-of-life service is a privilege, not a calling to be a savior. You and those you support come together in relationships of mutual healing and growth. Honor your win-win journey.

3)   Be present.

By all means, show up. But be present with patients after you arrive. Evaluate appearances, behaviors, surroundings, and interactions with others. Listen with your heart. Even silence speaks. Really try to understand living from their perspectives. Focus on advocacy for improving their quality of life.

4)   Try other doors.

Patients will have challenges such as dementia that may not respond to your usual front-door communication. Try other doors and even windows. Obstacles are enrichment opportunities in your partnerships with patients. Touch, music, pictures, stories, and fantasies are a few entry points. Let patients help you navigate your way into their world.

5)   Know your piece in the puzzle.

 

Adherence to rules of protocol and professional ethics should be routine. Be aware of boundaries such as confidentiality regarding yourself, your patients, and their loved ones. Follow guidelines of your hospice organization, and seek help when needed.

6)   Untie your knots.

There may be times of doubt, confusion, sadness, and guilt. These are normal knots of the caregiving process. Untie them by seeking support for your total well-being. Maintain proper rest, nutrition, exercise, and balance in your life. Do your best. Don’t be surprised when you discover reasons to kiss yourself.

7)   Spread the word.

Be knowledgeable about hospice and palliative care. Share information so others can benefit from these specialized areas of healthcare. Encourage involvement in hospice and palliative care career and service activities.

8)   Pick up a turtle.

 

If you see a turtle sitting on a fence post, you know somebody helped to put it there. Be on the lookout for turtles aiming for fence posts. Be a role model for other volunteers. Participate in organizations, conferences, workshops, and discussion groups where you can share best practices while learning new ideas.

   

       9)   Write death sentences.

Death will come no matter how often you avoid it or wrestle it to the ground. Have your advance directives, finances, and property in legal order. Urge others to do the same. Don’t burden loved ones later with important decisions you can record now. As you unfasten yourself from this life, be satisfied knowing your death sentences will be carried out according to your wishes.

  

    10)  Expect rainbow smiles.

 

Rainbow smiles hug you so tightly you can feel ribs of joy press against your essence. Hospice volunteering provides ongoing experiences for you to positively impact lives. When you do, rainbow smiles will come.

© Frances Shani Parker

You can read about my personal journey in becoming a hospice volunteer without realizing I was one here: https://www.linkedin.com/pulse/hospice-volunteer-me-frances-shani-parker?trk=mp-author-card

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

Dolls and Other Dementia Therapy (Research, Video 2:32)

 “What’s your baby’s name?” I asked while exploring my hospice dementia patient’s reality. Susan and her doll stared at each other, grinning as if they knew secrets from ancient times. And maybe they did. She looked at me, pointed to her doll and said, “She’ll tell you her name when you come back with cookies.”  (excerpt from my book Becoming Dead Right)

Patients with dementia find various stimuli engaging, some more than others. It’s important for caregivers to know which approaches are more likely to be successful when working with patients. The Research Institute on Aging of Charles E. Smith Life Communities in Maryland did research to determine stimulus engagement with193 residents of seven Maryland nursing homes. These results were reported in the American Journal of Geriatric Psychiatry:

1)      One-on-one socializing with a research assistant, a real baby, personalized stimuli based on the person's self-identity, a lifelike doll, a respite video, and envelopes to stamp were the most engaging stimuli.

2)      Refusal of stimuli was higher among those with higher levels of cognitive function and related to the stimulus' social appropriateness.

3)      Women showed more attention and had more positive attitudes for live social stimuli, simulated social stimuli, and artistic tasks than did men.

4)      Persons with comparatively higher levels of cognitive functioning were more likely to be engaged in manipulative and work tasks, whereas those with low levels of cognitive functioning spent relatively more time responding to social stimuli.

5)      The most effective stimuli did not differ for those most likely to be engaged and those least likely to be engaged.

Caregivers, particularly those in long-term care facilities, can use these dementia therapy research results when planning engagement stimuli and one-on-one socialization schedules for residents with dementia. This will help caregivers maximize benefits for patients.

As a hospice volunteer in Detroit nursing homes, I observed how easily many patients with dementia enjoyed their close relationships with dolls and stuffed animals. In this video, a daughter does doll therapy with her mother, who is past middle stage dementia. I found this video particularly interesting because, unlike many patients I have observed, this mother freely admits she knows her doll is not a real baby. But she still enjoys nurturing the doll and pretending it is real. The daughter wonders if the doll therapy is truly age appropriate for her mother. This video shares the mother’s response.

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

Hospice Volunteers and Family Bereavement (Research, Video 5:41)

Even after patients have died, the impact of hospice volunteers continues. Volunteers can play an important role in the bereavement of family members and the ratings of their loved ones’ quality end-of-life care. A study at the Warren Alpert School of Medicine at Brown University highlights the importance of volunteers in bereaved family members’ higher overall satisfaction with hospice services.

Using an analysis of the number of volunteer hours used in direct patient care and the total number of patient days served, researchers surveyed 305 hospice programs (67% freestanding and 20.7% for profit). A total of 57,353 surveys were submitted. Hospice programs with the greatest usage of volunteers had higher overall ratings of quality care. These programs with higher use of volunteers per patient day were associated with bereaved family members’ reports that the hospice programs quality of care was excellent. Research results such as this confirm the major contributions hospice volunteers make in improving quality end-of-life-care and bereavement.

This video showcases The Community Hospice, the largest hospice program in New York and one of the nation’s largest non-profit hospice programs. Grief and bereavement programs there service everyone, regardless of whether the person who died was a hospice patient:

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

Poem About Loneliness in Older Adults/ Seniors

                                         
She waited, grasping like a New Year's resolution...

Festive holidays have brought cherished opportunities for many older adults to enjoy some visitors they seldom see during most of the year. Whether at home or in institutions, loneliness can be both difficult and dangerous for their overall health. Too many of them endure the negative impact of loneliness daily.

“Missing” is one of sixteen original poems at the end of each chapter in Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. A hospice volunteer, I wrote it after witnessing the sadness of lonely nursing home residents who were missing the missing. They coped with ongoing loneliness that could easily have been avoided with gifts of time. But some relatives and friends kept putting off visiting them until it was too late.

As this new year begins with resolutions for change, consider making every effort to visit those who are ill or alone. Don’t sentence them to another year of missing you.

Missing

She waited,

hoping her years of caring

endured in grown-up minds,

rested in distant hearts,

conveyed how much she missed them.

She waited,

living real-time movies

of restless nights, anxious days

with inhaled hopes of fellowship,

exhaled sighs of deep despair.

She waited,

wishing nostalgic winds

flowed through cotton curtains,

brought relatives and friends

she cherished through the years.

She waited,

grasping like a New Year's resolution,

like a second suspended in time

until her clock stopped ticking

for visitors who never came.

© Frances Shani Parker

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

Comfort Feeding for Dementia Patients

A friend of mine was shocked and upset when he visited his mother recently. She has dementia and has only been in a nursing home a few weeks. Walking into her room, he found her being fed with a feeding tube. Although he is her primary caregiver, this decision had been made without his knowledge or approval.  His mother is in relatively good physical health for her age, and he felt this had been done because tubal feeding would be easier for the staff. He immediately set about changing her feeding back to hand feeding.

Although evidence suggests that feeding tubes do not improve survival or reduce risk of aspiration, they are used often on nursing home residents with dementia. Unfortunately, most residents have no documentation regarding their wishes on the use of artificial hydration and nutrition. One reason is that families may confuse the order of “do not feed” with meaning no artificial feeding. Nursing home staff members fear that they will be in trouble if residents lose weight and a feeding tube hasn’t been used.

The “Journal of the American Geriatrics Society” addresses these concerns. One solution is having residents’ wishes regarding goals of care clearly stating an individualized feeding plan that supports the residents’ comfort and wishes. The phrase “comfort feeding only” through careful hand feeding presents an alternative to imposed orders to end artificial hydration and nutrition.

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”

“The Bucket List” Movie: A Hospice Nursing Home Volunteer’s Review (Video Trailer 2:28 mins.)

All these years, we’ve joked about “kicking the bucket,” and now we learn there’s a list inside the bucket. “The Bucket List” is a movie starring Jack Nicholson and Morgan Freeman as terminally ill cancer patients. They meet as strangers with seemingly nothing in common, except a hospital room they share. Gradually, they bond and commit to leaving the hospital in order to accomplish adventurous goals on their bucket list. Fortunately, Nicholson’s character is a billionaire who can foot the globetrotting bills. With only months to live, the two men forge a special friendship through laughter and tears. They savor some of life’s final thrills by skydiving, racing cars, and visiting world wonders.

That’s a summary of the movie I saw today while enjoying my “kiddie pack” refreshments. What the summary doesn't mention is that the movie nudges audiences into thoughts of personal end-of-life journeys, that it helps them unravel philosophical lessons they tend to ignore, that it attracts people in large numbers in spite of critics who pan it. There are those who snicker with condescension and label "The Bucket List” a feel-good movie about death and mortality. A hospice volunteer, I smile, just thinking what a compliment that is.

What’s on your bucket list?

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

Changing the Culture of Nursing Homes

As a hospice volunteer in Detroit nursing homes for nine years, I have become very familiar with the kind of culture that is predominant in many nursing home facilities. When I speak of culture in this manner, this is what I mean: Whenever we enter a building, a certain climate or culture greets us. Depending on what that culture is, we sense the possibility of the kind of experience we will have. If unpleasant sights, odors and sounds greet us after we enter, we will certainly draw negative conclusions about what to expect. And we will probably be correct. On the other hand, a culture that nourishes and stimulates appropriately makes us feel welcome, happier and encouraged to return.

Too many nursing homes have structured, unexciting and tense cultures that impact staff, patients, caregivers and other visitors poorly. Among other practices, patients are expected to eat and sleep at the same times on a daily basis, although most people would readily agree that people's natural schedules are not that aligned. The ongoing boredom and loneliness, along with excessive focus on rules and medical procedures, have lost sight of peoples' overall human needs. In addition, there is a layer of anxiety regarding compliance, or lack of compliance, with all the various rules that must be followed, regardless of how they impact people. In urban areas, particularly those that serve low income and racial-ethnic minorities, these factors are especially noticeable.

Fortunately, growing groups of reform-minded individuals are making their voices heard regarding the need for change in nursing home culture. They are not pushing cosmetic changes, but real changes in how people live and work together with a common goal. The focus is primarily patient-centered and encourages their independence. The following are a few of the alternative practices they are promoting to improve nursing homes:

1) Personalized schedules
2) Independent "houses" composing a nursing home
3) Family atmosphere with plants and small pets indoors
4) Regular contact with children through on-site daycare centers and after-school programs
5) More activities and decreased medication

As millions of baby boomers become senior citizens, we will be hearing more about these reforms. Our support will be needed to make these changes real and available to all patients, regardless of where their nursing homes are located. What do you think about changing the culture of nursing homes?

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