Hospice Cultural Diversity: Share What Your Hospice Organization Is Doing

It is no secret that hospice services are underutilized nationally among people of color. While several barriers to utilization have been studied, solutions always include the necessity of more outreach to racial-ethnic groups by hospice organizations.

Promoting cultural diversity requires sincere commitment to hire more people of color at all staff levels, more input from people of color on what their needs really are, and more hospice recruitment in their communities at churches, schools, recreation centers, events, etc., along with media, particularly in their languages. Hospice workers must take proactive outreach roles in presenting the benefits hospice provides, while making recipients of their services feel welcomed and respected.

These are examples of what two hospice organizations are doing:

Julie Cranz
Hospice Volunteer Coordinator
Hospice of Western Kentucky
Owensboro, KY

Our hospice started an ACCESS committee in order to identify, educate, and serve populations that we do not currently serve. We have contacted the local NAACP president, who has forwarded information about us to all minority churches in our city. We will be making a presentation at an NAACP meeting and offering free health screenings at local minority churches. We also changed the photos on our brochures to ensure that a diverse population is represented.

Monica Escalante
VP of Volunteers, Community Education and Outreach
Montgomery Hospice
Rockville, MD

We have done quite a bit regarding cultural diversity. We have prioritized the work within the agency. MH has diverse staff, and our senior management is also very diverse (ethnically and also in terms of professional backgrounds and experience). Developing cultural competency is an important part of staff orientation, and we also have engaged our experienced staff in an annual discussion about culturally competent care. Finally, we have language interpretation services provided over the phone and available 24/7.

For outreach, we have done the following:

The Spanish Outreach
We offered bereavement groups, translated many flyers, and have a Spanish information page on our website (with several articles): http://www.montgomeryhospice.org/patients/indexSPANISH.php
We also participate in the Latino Health initiative and many festivals they organize.

The Asian Outreach
We participate in health fairs for all minority groups. Last year, we connected with a series on “Working with Asian Populations at End of Life” organized by a truly influential grass roots association.

African American Outreach
A bereavement counselor attends the Black Ministers conference on a monthly basis and our Manager of Outreach has a MH booth at every African American event in the county.

We are in constant communication and provide helpful information to the faith community (we have a huge email list), and through them, we reach another diverse segment of the population.

All our communications, flyers, and other tools are tested for cultural competency; we do that using our own diverse staff, who happen to love providing this kind of feedback.

Surely, more hospice organizations have cultural diversity best practices to share that others can explore. Quality end-of-life care is an entitlement for everyone. That is the hospice philosophy. What is your hospice organization doing to promote cultural diversity? Please comment below.

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

Nursing Home Staff Shortage: Patient Neglect and Abuse (Video 2:07 mins.)

One reason I wrote Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is to relate, not only cozy stories that depict the positive side of my hospice volunteer experiences in nursing homes, but to also convey those seldom mentioned negative aspects in need of improvement. The reality, supported by research, is that the quality of life for all patients, whether at home or in institutions, depends on the context of their care. Among other variables, that context includes policy makers, staff, equipment, race, and location. That context also includes me, and that’s why I advocate for patients.

Book Excerpt:

“Sometimes a shortage in staff had harmful consequences for patients. This included being left in unchanged beds, not being fully clean, and not being assisted when help was required for eating. Some patients tried to feed themselves, using their hands when they couldn’t see their eating utensils. Patients waiting for help sometimes stared at their food while it turned cold. Those with depression or dementia often had little interest in food. They needed someone to motivate them throughout the meal.”

Staff shortages in nursing homes negatively impact patients around the country. There is no excuse for patient neglect and abuse, especially when it is criminal. According to the National Citizens' Coalition for Nursing Home Reform (NCCNHR), it is a violation of state and federal law for any person, including facility staff, volunteers, visitors, family members or guardians, or another resident, to neglect or abuse a resident.

Neglect and abuse can be reported to the following:

1) The nursing home’s administrator, director of nursing, and social worker
2) The state or local ombudsman
3) The local police or state law enforcement
4) A Protection and Advocacy or Adult Protective Services agency
5) The state survey agency that licenses and certifies nursing homes (often in the Health Department)
6) A citizen advocacy group, or other church or community group that visits regularly

This video about alleged patient neglect and abuse in some New York nursing homes indicates that critical staff shortages can be a contributing factor.

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

What Motivates Hospice Volunteers? (Video 4:52 mins.)

People serve as hospice volunteers for various reasons. That fact is official and supported by research gathered from 351 mailed surveys. Volunteers from 32 hospice organizations gave their reasons for performing regular service. Their comments were ranked in order of importance. The “American Journal of Hospice Palliative Care” reported these results:

1) Help others and learn
2) Foster social relationships
3) Feel better
4) Pursue career goals

Why is this information useful? An analysis of this data can help volunteer coordinators in their approaches when recruiting. Younger volunteers reported stronger career motivations. Retired and unemployed volunteers reported stronger social motivations. Emphasizing service, varied learning experiences involved, and potential for social networking will encourage others to consider participating in hospice volunteer opportunities.

In this video, San Diego Hospice volunteers explain the win-win rewards of serving hospice patients.

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

“Hospice and Nursing Homes Blog”

Muslim Purification Death Ritual

The crescent moon and star symbolize the Muslim faith.

In my last post, I talked about embalming and preparing the body of the deceased for the wake, funeral, and burial. This excerpt from my book “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” describes the death ritual preparation experience of a friend of mine whose husband was a Muslim. No embalmment and make-up were used. The body was washed, covered, and buried as soon as possible. I write this with respect for Melvin and in my continuing efforts to inform others of the many facets surrounding death.

“Muslims wash the body of the deceased during a special purification ritual. My friend Carolyn, who is not a Muslim, participated in the washing of her Muslim husband’s body and received great comfort through her involvement. I asked her about her participation in this moving death ritual.

She explained, “The Imam, a Muslim leader, mentioned that three adults, including a spouse, could wash the body of the deceased during a ritual that prepares the loved one for being with Allah. He asked if I wanted to go to the funeral home and be a participant in washing Melvin, my deceased husband. I welcomed this opportunity. I knew Melvin would have wanted me to be actively involved.

In a private room at the funeral home, I used soap and water to clean Melvin’s upper body, while the Imam and another gentleman washed his lower body. During the washing process, I spoke tenderly to Melvin. I told him how wonderful he looked and how much I loved him. Even though he was dead, he wore the most beautiful smile. I knew he heard every word I said. The room was very quiet and serene. After three complete body washings, Melvin’s body was dried, oiled, and wrapped in two pieces of plain white cloth. A final covering displayed writings of the Holy Quran.

“How did you feel about your role during this ritual and afterward?” I inquired.

“What I felt most while washing Melvin was an inner sense of calm. I knew his wishes were being carried out, not only with that ritual, but with all the Muslim rituals related to his death. As I washed him, I knew he was at peace. I remembered how bad his pain had been sometimes before he died. He had prayed aloud to Allah to have mercy on him during his suffering. I felt relief knowing his distress was over. I appreciated the respect he was given. Washing Melvin’s body was a blessing that helped me in my healing.”

© Frances Shani Parker

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Preparing the Dead Before a Wake and Funeral (Video 6:00)

As a child growing up in New Orleans, I looked forward to going to open-casket wakes at funeral homes. I felt good about wakes, not because I found them entertaining, but because I appreciated the seriousness and empathy of the rituals. This excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes, describes my experience, which motivated me to write this post about one form of preparation of the dead.

“Viewers sat in rows of chairs facing the casket and softly talked among themselves. This time together was a reunion for them as well as a time to discuss how the body was dressed and “fixed up” with cosmetics. I had no idea that many people had wakes with closed caskets, no funerals at all, and that death rituals were performed in different ways among various cultures and religions. Comments about the deceased wearing a smile, looking peaceful, or appearing to be asleep were considered good compliments.”

© Frances Shani Parker

I never thought about the people who were involved in preparing the body in such a way that we would be more likely to think the deceased looked content. This video gave me a general understanding of what actually goes on behind the scenes at a funeral home.

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

Hospice Volunteer Training Ethical Issues

How should I respond when a patient’s family offers me gifts and gas money?

Is it okay to date my patient's unmarried caregiver?

Can I ask the family to only speak English when I’m around, so I won’t feel left out?

My patient wants me to help him commit suicide. He hates being alive in his condition. How do I handle this?

These are a few ethical questions that may concern hospice volunteers as they go about their duties of providing quality of life care for terminally ill patients. Perhaps you can think of many more. While training classes that certify hospice volunteers cover many topics, they don’t always cover the varied situations that can arise for someone playing the role of healthcare volunteer and friend.

The College of Nursing at Utah did a study that explores ethical issues hospice volunteers confront during their assignments with patients. These are the prominent themes resulting from interviews of hospice volunteers:

1) Dilemmas about gifts
2) Patient care and family concerns
3) Issues related to volunteer roles and boundaries
4) Issues surrounding suicide and hastening death

The study also concludes that hospice volunteer training should include more discussions after the initial training. This later training should include more ethical situations confronting volunteers and strategies for dealing with them.

You can read more here about this study of hospice volunteers and ethical issues.

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

Who Wants a Hospice-Palliative Care Volunteer?

Everybody wants a hospice-palliative care volunteer, right? Wrong. I never assumed that patients would always be glad to have me as their hospice volunteer, and it’s a good thing I didn’t. One day I met a patient who made it clear I wasn’t wanted. My book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes explains what happened. This is how the initial conversation went with a hospice patient named Lelia:

“When I first met her, she was sitting alone in a dimly lit room she shared with three other women. Her blouse was unbuttoned, exposing one sagging brown breast and a wormlike scar where her other breast had been removed. Depression embraced her like a close friend. A wary look in her eyes told me she had no place for a hospice volunteer on her agenda.

“What’s that, you say you a hospice volunteer, and you want to come see me every week? No, I don’t need to see you. I have enough visitors,” Lelia complained shortly after I arrived. Her tone reeked with annoyance at my intrusive presence in her gated world.

“Lelia, I came by to see you today because I hoped we could get to know each other better. I was thinking that I might be able to help you in some way, maybe with a problem or something.”

“No, I got enough help. Like I said, I don’t need to see you. I don’t need to see nobody. I just want to be left alone.”

© Frances Shani Parker

So much for making me feel welcomed. Fortunately, I was able to win Lelia over and have a very interesting relationship with her. Her story is one of my favorites.

What does research say about dying people wanting hospice-palliative care volunteers? According to the “The American Journal of Hospice Palliative Care" research at Mount Allison University yielded the following results using 100 adults:

Participants were asked to imagine they were terminally ill and told about services volunteers could provide. Finally, they were asked if they would want a volunteer and why. Eighty-nine participants wanted a volunteer, mostly for general support and lack of nearby family. What about the other thirty-five? Some sounded just like my patient Lelia by saying they didn’t need help. Other reasons included being private people.

In the total group, sixty-five participants were aware of the volunteer program. Among those who were not aware, 89% expected their family doctor to inform them of the program. These results indicate a need for more patient information regarding the availability of hospice-palliative care volunteers.

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

Hispanic Elders Benefit from Architecture with Front Porches

I talk about the importance of a front porch in my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” Baby Boomer Haven, an imaginary nursing home based on best practices of some, but not enough, nursing homes that already exist, has a great front porch. This is how a resident describes the front porch when she takes the reader on a tour:

“I love sitting in my rocking chair out here on the front porch surrounded by nature. It reminds me of when I used to sit on the porch getting my hair combed down South when I was a girl. That’s where I heard grownups tell stories about my family and African American history. The front porch is where I first grabbed a handle on life. In later years, that was where my own children learned life lessons and heard stories that were passed down through generations. Nowadays, other residents and I rock our chairs to discussions about everything imaginable.”

Did you grow up having a front porch or stoop where you could sit for hours interacting with and observing neighborhood happenings? Do you still have one? If you have had that experience, you’ll understand why the research I’m about to explain praises “positive front entrances” for elders in a low-income Hispanic neighborhood.

According to “Environmental Health Perspectives,” researchers at the University of Miami Miller School of Medicine theorized that Hispanic elders’ social, psychological, and physical functioning would be impacted by “architectural features of the built environment” (front porches or stoops) that promoted direct observations and interactions with the neighborhood. Studying a 403-block area in urban Miami, Florida for three years, they arrived at the following conclusions:

Elders living on blocks marked by low levels of positive front entrance features were 2.7 times as likely to have subsequent poor levels of physical functioning, compared with elders living on blocks with a greater number of positive front entrance features. The research supports what those of us who have had front porches suspected all along: “Architectural features that facilitate visual and social contacts may be a protective factor for elders’ physical functioning.”

Excuse me while I go sit on the porch.

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

Hospice Team Meetings and Technology

Hospice services are a team effort. By law, hospice agencies must deliver services using an interdisciplinary approach to patient care. As technology evolves and becomes more accessible, it can play a larger and more beneficial role in the implementation of hospice teamwork. How effectively have hospice teams been using technology to address challenges faced at interdisciplinary team meetings?

In a study reported in the “International Journal of Electronic Healthcare,” 190 representatives of hospice agencies were surveyed by phone regarding the level of technology use in hospice Interdisciplinary Team (IDT) meetings. Survey results indicate that hospice team meetings often do not incorporate technology, even when it could be beneficial. Over half of the participants did not include computers at meetings, even though computers could help them access patient records and medication lists for designing care plans. Technology can better serve hospice agencies if they use it more to enhance the social and product functions of the group process at their team meetings.

You can read more here about this study on technology and hospice team meetings.

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

Nursing Home Smoking: A Hospice Volunteer’s View (Video 1:16 mins.)

According to MI law relating to nursing homes, smoking is either not allowed or restricted to certain areas of nursing homes. This whole idea of smoking in “restricted” areas reminds me of a restaurant I visited where smokers and non-smokers were separated by five feet of aisle space down the center of a small room. I could actually see a cloud of smoke hanging over the non-smoking section. Where was the “restricted” area?

A nursing home is a healthcare institution. Considering the fragile mental and physical conditions of many residents, I question the safety of some of the restricted areas. Several of my hospice patients who smoked had oxygen tanks stationed near their beds. As if the fire hazard of smoking is not enough, the issue of healthcare should certainly be more of a priority.

All the nursing homes where I volunteered had indoor smoking areas to accommodate patients and staff who wanted to smoke. I held my breath to avoid second-hand smoke every time I briefly entered a smoking room to get a chair when they were not available in the halls. Smoke, which was both seen and smelled, floated into the halls every time the doors to smoking rooms opened. Whether they smoked or not, everybody’s nostrils were assaulted with sucker punches of first or second-hand smoke.

In this video, an elderly woman who uses an oxygen tank sparked a fire at an apartment complex for the elderly. While she was not in a nursing home smoking area, the resulting fire and crisis in having to protect, console, and evacuate all the other residents to buses taking them to a shelter could easily have happened at a nursing home.

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

BlogTalkRadio Interview with Frances Shani Parker, Author of “Becoming Dead Right” (30 mins.)

Earlier this week, I was interviewed by Patricia Grace, a certified senior advisor and host of the BlogTalkRadio Show “Aging with Grace.” This show airs weekly on Monday evenings in Pennsylvania and showcases discussions related to eldercare. BlogTalkRadio is the social radio network that allows users to connect quickly and directly with their audiences. Using an ordinary telephone and computer, hosts can create free, live, call-in talk shows.

Patricia Grace and I covered several topics during our interview. They included the following:

1) Hospice Care
2) Caregiving
3) School-Nursing Home Partnerships
4) Healthcare Research
5) Culture Change in Nursing Homes
6) Ten Tips for Becoming Dead Right

You can listen to the "Aging with Grace" interview here.


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

Caregiving with Sensitivity: Semi-Sensory Deprivation and The Virtual Dementia Tour (Video 3:04 mins.)

I have been a big fan of semi-sensory deprivation training for some time. For example, lack of eye care for nursing home residents is widespread in America and greatly impacts these residents’ quality of life. It’s only logical that if volunteer participants could wear glasses or goggles that have lenses smeared, so their vision is blurry, they can arrive at a better understanding of what patients with impaired vision experience. Simulations impairing speech, smell, taste, hearing, walking, talking, eating, touching, etc. help others really experience what patients are going through on a daily basis, and they provide great discussion. Nursing homes, hospitals, and medical schools are supportive of providing these experiences.

Because family members care for most patients with dementia, it is important that family caregivers develop more sensitivity to patients’ experiences. One example of training to improve their sensitivity is The Virtual Dementia Tour. This training developed by P.K. Beville for Second Wind Dreams “helps sensitize families to the needs of their loved ones” by helping them see, feel, and hear in ways similar to the experiences of an elderly person with dementia. Second Wind Dreams® is a national non-profit organization based in metro Atlanta.

In this video about the Virtual Dementia Tour, participants perform everyday tasks such as matching socks while wearing the following:

1) Dried corn in their shoes to simulate arthritis
2) Gloves with taped fingers to simulate declining age
3) Goggles to simulate impaired vision
4) Headphones to simulate background noise distractions that interfere with patients’ focus

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

Hospice and Nursing Home Poem: Volunteer-Patient African American History

My book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes concludes each chapter with an original poem. I was inspired to write this poem while watching my hospice patient sleep. I thought about our common history that bridged our communication beyond her dementia and enhanced my respect for all she represented.

Deeper Than Words

The outside world arrives
wearing my willing face.
Toothless, your smile widens
like a baby’s hungry for attention.
Almost ninety-eight years old,
your inner candle still glows.

A hospice volunteer, I lean closer,
talk into your listening left ear,
“Today is Sunday, Miss Loretta.”
My news drifts away like smoke.
You stare at me through dying coals.
Whatever I ask, you whisper, “Yes.”

I stroke your age-softened arms
while your hazed mind masters sleep.
Watching you, I dream generations
of women, black and strong, each one
a book of sustaining stories
about joy, pain, courage, survival.

Within your warm brown frame,
spirits from our common history linger.
Aides say you have dementia,
that you don’t know a word I say.
Our language goes deeper than words.
We speak to each other’s souls.

© Frances Shani Parker

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Culture Change in Nursing Homes: What Works, What Doesn’t (Video: 1:59 mins.)

Most people agree that changes in the stereotypical, traditional nursing homes are long overdue. What makes a nursing home really feel like home? What needs to happen to make that a reality? What are some of the barriers that negatively impact progress? A University of Pennsylvania research study about culture change in nursing homes focused on these concerns. After staff interviews were done, three nursing homes reported these results:

Barriers to Change

1) Exclusion of nurses to culture change activity (While nursing assistants were not mentioned here, I’m inclined to believe they were also excluded.)

2) Perceived corporate emphasis on regulatory compliance and the "bottom line” (money)

3) High turnover of administrators and caregivers

Promoters of Change

1) A critical mass of "change champions"

2) Shared values and goals

3) Resident/family participation

4) Empowerment at the facility level

Clearly, changing nursing homes successfully involves input
from all levels of staff, residents, and community. Incentives encouraging achievement of new and shared goals are also effective.

You can read more details about this study here.

You can view this video on the importance of inclusiveness in culture change proceedings.

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