Hospice Volunteer Training: End-of-Life Communication Issues

Sooner or later, hospice volunteers experience or observe communication concerns relating to patients or their families. In a research study by the Communications Department at the University of Utah, hospice volunteers reported that denial was the most common communication issue for patients, family members, and caregivers. The second most reported communication problems related to negative feelings and family conflicts. At personal levels, volunteers reported that their most common communication problems centered on interacting with patients who had diseases such as Alzheimer's or Parkinson's disease that impaired conversations. These results suggest that volunteer training programs should include more information to support volunteers in their communication efforts.

Personally, I enjoy coming up with ways to bridge gaps in communication. I never assume patients cannot hear me, unless they have been officially diagnosed as hearing impaired. I talk to them the way I would talk to hearing patients. I tell them what's going on at the nursing home and other news. Even when their eyes are closed, but I know they are awake, I tell them who else is in the room and say something positive about them to those present, so patients can feel included in the conversations.

I check their assignment forms and talk to their caregivers to find out what their backgrounds and interests are. This gives me more sources for topic ideas. If patients are able to leave the room, I take them on walks or wheelchair rides. I read to them, play music I think they will enjoy, touch them to reinforce my presence; I feed them, play games, sing, play the radio, and watch television with them, regularly making comments and always analyzing their body language to see if I'm making connections.

When I do a good job of this, I see signs that we are making progress. There may be smiles, alertness, something in their eyes that tells me our communication gaps are getting smaller, that we are forging relationships enhancing our lives. That's when the beauty of hospice volunteering sweeps me up like a great piece of music.

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: “Pieces of Our Minds” (Dementia, Alzheimer’s Disease, Hospice, Nursing Homes)

"Pieces of our Minds" is one of sixteen original poems included at the end of each chapter of my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.”

Dementia refers to a group of conditions that gradually destroy brain cells and lead to mental decline. Various conditions can cause dementia, but Alzheimer’s (Ahlz-high-merz) disease is the leading cause. There is no cure for patients with dementia, and eventually they need complete care. Their quality of life improves when they receive effective healthcare and support.

As a hospice volunteer in Detroit nursing homes, I learned that dementia is like a fluttering bee. I never knew when it would make honey or sting. I participated in adult fantasies often. An important lesson I learned is that I don’t know the extent of anyone’s mental boundaries. One thing I know for sure is that I visited their Oz weekly and became a better person.





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

Hospice Worker Strategies When Families Expect Miracles

The terminally ill and their families often expect miracles. What can hospice workers do when families firmly hope for miraculous recoveries of dying patients? Doctors are particularly challenged when families continue to speak of divine intervention after all earthly procedures have failed. Respect for the spirituality and religions of others is important during healthcare treatment. Knowing how to walk that fine line of balance can weigh heavily on the quality of death journeys.

Research by the University of Pennsylvania School of Medicine, USA has provided a practical approach to this concern that allows families' beliefs in miracle healings to coexist with practices of good medicine. The following strategies applied to meet the unique needs of families are involved:

1) Exploring the meaning and significance of miracles

2) Providing balanced, nonargumentative responses to families' expectations of miracles

3) Negotiating patient-centered compromises while demonstrating respect for families' spirituality and doing what is medically appropriate.

Using these strategies can provide a means for hospice workers to maintain good relationships with families expecting miracles while medical practices are implemented. Patients are always the first priority.

This Fox News video clip is an example of why many people believe in miracles, regardless of a medical prognosis. Viewers witness the miracle of Val Thomas, a woman who was technically dead for almost 18 hours after two heart attacks. Rigor mortis had even set in. Yet, she lives!


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

Caregiving with Music Enhances Communication

Are you a caregiver? Do you sing? Do you enjoy playing music? If you answered “yes” to these questions, you have the ability to add vitality and meaning to patients’ lives, especially those who have dementia. Music and singing can uplift their spirits.

A study was done to enhance vocally expressed emotions and moods in the communication between caregivers and persons with severe dementia. Participants included nine nursing home residents with dementia and five professional caregivers. The presence of background music and caregiver singing enhanced the communication between caregivers and residents. Background music promoted playfulness. Caregiver singing improved sincerity and intimacy in their interactions.

How do these results influence you as a caregiver who sings or plays music? They support your efforts to provide quality of life for patients with dementia. Take the time to find kinds of music you think patients will enjoy. Let the magic play.

You can read the research that was reported in the “International Journal of Nursing Studies.”

In this video, Mary Peakes, a hospice nurse, sings "I Wanna Go" to patient Pamela Rucker, who died a few days later. Pamela’s daughter stated, “I want to thank all the hospice nurses. I am so grateful for these angels who helped my mother and her family through this difficult time.”

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

Processing Grief Through Art: Drawing a Dying Loved One (Video 2:30 mins.)

Those of you who have grieved at the bedside of a dying loved one can probably recall the many streams of thoughts that confronted you. Grace Graupe Pillard experienced her own unique recollections while drawing pictures of her dying mother every time she visited her bedside.

Grace makes it clear that she and her mother had a rocky, but affectionate, relationship. Her mother, a refugee from Nazi Germany, was receiving hospice care at the time. While drawing, Grace began to experience her mother in an objective way for the first time. An intimacy evolved between them that she had not known before. Her mother knew she was being drawn. In spite of their turbulent differences, their similarities surfaced. In the last picture of this visual diary, her mother’s mouth is open.

After studying scanned pictures of her mother, Grace noticed clearly in the flow of the lines the different emotions she had felt while drawing. She says her artistic involvement in her mother’s dying helped her to process the grief of losing someone who was such an important part of her life. Grace created an exhibition of her drawings in a show titled “Stop Stealing My Face.”

This video showcases an interview with Grace Graupe Pillard and displays of her artwork.

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

Friendship, Loneliness, and Senior Women Living Alone (Video: 1:04 min.)

Do senior women with family members who live nearby really need friends as much as senior women without family members living nearby? According to this research, they do. Reported in the “Journal of Gerontological Nursing,” a study by the University of Northern Iowa in Cedar Falls examined the role of friends in predicting loneliness among women over age 65 who lived alone. Researchers hypothesized that those women who didn’t have family members living nearby would be lonelier than those who did. Well, that didn’t happen. It turns out that “close friends were important for women living alone, regardless of whether they had family living locally.” This information is noteworthy because it emphasizes the need for making social connections a priority in the lives of older women who live alone, regardless of their local family connections.

This video titled "Knitting Together" showcases a group of older women who socialize through weekly knitting sessions. A woman shares near the end, “I’m here to enjoy the company.”

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

Hospice Volunteer Book Review: Meeting the Death Monster in Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

In America, death is still a terminally ill taboo in great need of palliative-hospice care. Too many people avoid talking, hearing, writing, or reading about the end of life. As an author and consultant on hospice and eldercare, I have been told on several occasions that the topic is just too “depressing” or too “final.” Several months ago, this reluctance to deal with death visited a friendship. I had given a casual friend a copy of my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. Not knowing her feelings about death, I decided not to talk to her about the book unless she brought it up. Recently, she did. I’ll call her Alice.

Alice works in the healthcare profession, so I was somewhat surprised to discover that she feels strongly that death, a frightening stalker of her dreams, is her enemy. She shared that death has stolen too many of her loved ones, including pets. She helplessly dreads the thought of losing even more. My own acceptance of death, which comes across clearly in my conversations and writings, seems inappropriate to her. She finds my views too accepting of her enemy, too casual a regard for life. While she says she would consider hospice care along with other options, she admits she could never be even an average hospice volunteer.

What is her feedback regarding my book? She loves the patients’ stories and my comments about interacting with various people in the nursing home world. The original poetry, which concludes each chapter and probably nudges her own poetic abilities, pleases her. She finds the discussions on caregiving, dementia, death rituals, and bereavement informative. The explanations about school-nursing home partnerships and the ideal nursing home described in the chapter “Baby Boomer Haven” are particularly enjoyable. But she dislikes emphatically the premise that there is a “right” way to die.

I am not sure if her hostility toward death has changed much, but I hope that this book meeting with what she refers to as “the monster” has impacted her positively on some level. Those of us who embrace the topic of death will continue to be viewed with dismay by those who deal with mortality through avoidance and resignation of themselves and loved ones as victims of death’s malicious powers.

Alice’s revelations reinforce the importance of promoting death as a natural part of life that should be experienced with dignity by everyone. One person at a time, I believe conversations and writings enhance lives of the naysayers by slowly empowering them with death acceptance, even as they resist the message. I appreciate Alice’s frankness in sharing death’s painful presence in her life and in giving feedback on my book. Most of all, I commend her willingness to become a ball of courage rolling into the high weeds where the death monster lives.

You can read book endorsements, excerpts, and more here at my website.

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

Impact of Death Rattle Sounds on Hospice Workers (Research, Video 3:27)

Anyone who works closely with dying patients may have heard death rattle sounds. Hospice workers, including volunteers, who have heard these sounds in the presence of patients’ relatives and friends may feel the need to explain to them what the patient is experiencing and reassure them.

According to Wikipedia, a “death rattle is a gurgling or rattle-like noise produced shortly before or after death by the accumulation of excessive respiratory secretions in the throat. Those who are dying may lose their ability to swallow, resulting in such an accumulation. While it is medically established that the death rattle is a strong indication that someone is near death, it can also be produced by other problems that cause interference with the swallowing reflex. It is sometimes misinterpreted as the sound of the person choking to death. In terminal care, drugs may be used to reduce secretions and minimize this effect.”

A study reported in Palliative Medicine was done to see how the death rattle sounds impacted hospice staff and volunteers. Most expressed negative feelings about hearing the sounds. Many felt the need to intervene to end the sounds using a therapeutic option. The study concluded that “doctors and nurses need to consider why, when and how they intervene and the consequences of that intervention.”

You can read more about this study here and more recent 2015 research here.

This video below features signs of a person approaching death:

Visit here for more research and other information about the death rattle experience, including a recording of actual death rattle sounds.

It would be interesting to read firsthand information from hospice workers, healthcare staff members, and other caregivers regarding their personal experiences with a patient during a death rattle experience.

Please scroll down to many comments 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

BlogTalkRadio Interview with Frances Shani Parker and Viki Kind (30 mins.)

Recently, I was interviewed by Vikki Kind, a bioethicist and medical educator who specializes in end-of-life issues. A hospice volunteer with Hospice of the Conejo in Thousand Oaks, California, Viki is also host of the BlogTalkRadio Show “Kind Ethics.” 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.

Viki Kind and I covered several topics during our 30-minute interview. They included the following:

1) Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
2) Writing
3) Urban Nursing Home Issues
4) Cultural Diversity
5) Racial-Ethnic Healthcare Disparities
6) Healthcare Research
7) Service-Learning (Definition, Implementation)
8) School-Nursing Home Partnerships
9) Ageism
5) Semi- Sensory Deprivation
6) Honoring Patients’ Histories

You can listen to the "Kind Ethics" interview here.

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

Wii Fit and Wii Sports for Senior Rehab (Video 2:17 mins.)

Nintendo Wii Fit and its older sibling Wii Sports continue to enhance the world of rehabilitation by exercising entire bodies of seniors and others. The newer Wii Fit uses the Wii Balance Board, a pad that players stand on while doing various types of exercise, including calisthenics, yoga, and balance games.

Baseline tests established with Wii Fit keep track of patients’ individual progress. This direct feedback from the game is a big plus because it always keeps patients abreast of how well they are doing. With variety, tracking, and personalized fun provided by the Wii games, more seniors can look forward to rehab with “old school” opportunities to hula-hoop and twist.

Patients at St. Mary’s Medical Center in San Francisco are pleased with both Wii products when used in recovering strength and balance from traumatic injuries or surgery. This video shows Wii Sports and Wii Fit being used by patients at St. Mary’s Medical Center.

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

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