Patient Violence Against Healthcare Staff (Research, Video 2:46)

The first time I saw a female nursing home resident with dementia attack a female nursing assistant (CNA), I really wasn’t surprised. Violence has become so embedded in our society that it’s expected, even in healthcare facilities. I was a hospice volunteer in an urban nursing home. The incident happened so quickly, I almost missed the facial punch that struck the CNA so hard I thought she would fall to the floor. What followed the punch is what impressed me most. There was a brief pause while the CNA steadied herself and walked away. Another CNA immediately interceded and calmed the resident who may have forgotten what she did later.

Long-tern care staff members are at high risk for experiencing aggression from residents. They need ongoing safety information to prepare themselves. Reported in the Journal of Clinical Nursing, results of a focus group study involving the interviewing of 30 nursing home staff caregivers revealed these three caregiver themes regarding patient aggression:

1)   Caregiver explanations regarding the occurrence of aggressive behavior and contributions of residents and caregivers

2)   Measures for handling the aggression of residents

3)   Caregiver self protection and coping with aggression

While staff caregivers use many interventions to reduce aggression, too often they ignore their own practical knowledge about connections between aggressive behavior, pain, and other physiological issues that may cause aggression. More education and emphasis on a systematic approach, including factors leading to aggression, is needed to help staff caregivers better manage resident aggression and their own coping strategies.

This video reminds us that violence against healthcare workers impacts everyone:

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 Chaplains: Who Wants Them? (Research, Video 1:11)

Being diagnosed as terminally ill can trigger many thoughts in a person’s mind. Considerations may include if or how their lives matter, what they can do to make their final journey more productive, what happens after death. For those who are inclined toward beliefs in religious or spiritual truths, the hospice chaplain is someone they may want to counsel them with answers.

What do patients expect to receive from hospice chaplain visitation? Who are the people who request this support? Why are these visits important to them? These are questions that the Department of Chaplain Services at the Mayo Clinic in Minnesota researched with 4500 eligible medical and hospital patients in Minnesota, Arizona, and Florida. About one-third of the mostly male, married, over age 55 Protestants and Catholics responded from each site with these results:

1)   Nearly 70% of patients reported wanting chaplain visitation.

2)   Chaplains visited 43%.

3)   Indicating that visitation by a chaplain was important were 81% of patients.

4)   The strongest predictor of wanting chaplain visitation was denomination vs. no indicated religious affiliation.

5)   The most important reason for patients wanting chaplain visitation was that chaplains served as reminders of God's care and presence.

Being religiously affiliated is a very strong predictor of wanting chaplain visitation. In this video, Sig Jaeger, chaplain of Hospice Palm Beach County in Florida, and a patient share their mutually beneficial visitation experiences together:

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

Nursebot Pearl, a Robotic Assistant for Older Adults (Video 5:21)

Meet Nursebot Pearl, a robot that will make you rethink your vision of how a caregiver can look and interact with you. Whenever I mention the use of robots for improving the quality of life of older adults, someone feels compelled to remind me that robots can’t replace people. I totally agree. But the reality is that people are living longer, and the population of older adults with ongoing health concerns continues to increase. Those living at home with chronic disorders are particularly in need of support that robotic technology can provide.

Several years ago, researchers from the University of Pittsburgh and Carnegie ‎Mellon University started the Personal Robotic Assistants for the Elderly project, an inter-‎disciplinary multi-university research initiative focused on robotic technology for the ‎elderly. The project goal is to develop mobile, personal-service robots that assist older adults suffering from chronic disorders in their everyday lives. Pearl continues to be researched and improved. The National Science Foundation funds her development.

A talking robot, Pearl’s face has interchangeable parts that display various emotions. Among many tasks, she can help seniors maintain their independence by reminding them about hygiene, medications, doctor’s visits, and other important information they might forget. She can send information remotely to caregivers and provide needed strength for manipulating objects. A major benefit for older adults living alone is the social interaction they can enjoy in her company.

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

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 Racial-Ethnic Outreach: African American Brochures (Research, Video 1:47)

Hospice services are underutilized nationally among racial-ethnic communities. While several barriers to utilization have been studied, solutions always include the necessity of more outreach to racial-ethnic groups by hospice organizations.

The Leonard Davis School of Gerontology at the University of Southern California researched the outreach possibilities of comprising a brochure of hospice patient role model stories aimed at improving attitudes and knowledge of hospice among older African Americans. They used community-based organizations that included senior centers, community exercise programs, churches, and senior care management services in the greater Los Angeles area. Participants were seventy-one African Americans aged 65 and older.

Hospice brochures with role model stories showcased African Americans who had experienced successful hospice programs. They shared their initial attitudes, beliefs, influences affecting their enrollment in the hospice programs, and outcomes resulting from their participation. The conclusion of this pre-post pilot study revealed that "exposure to a hospice brochure containing theoretically driven, culturally parallel, role model stories was effective in improving knowledge of and attitudes toward hospice as well as intentions to enroll a family member or self in hospice care.”

The hospice philosophy promotes the entitlement of quality end-of-life care for everyone. Culturally sensitive brochures are among many examples of what hospices organizations committed to that philosophy can do to enhance community outreach. In this video, Treasure Coast Hospice of Florida shares testimony from role model Marian about her positive hospice experience while caring for her sister Valerie.

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

Patients Rate Communication With Doctors (Research, Video: 52)

Does your doctor communicate well with you? Can you ask any question and feel heard, cared for, and unrushed? Are you involved in treatment decisions? Good communication includes compassion, respect, and attentive listening skills. To some degree, these skills can be taught, which is why medical students are given formal training in them. What are the mutual benefits? Doctors can benefit from fewer lawsuits and better reputations, which can enhance their careers. Patients benefit with happier healthcare experiences and better health, even in terms of life and death.

But what is too often the reality of patient-doctor communication from patients’ perspectives? A study reported in Cancer revealed these research results from questionnaires answered by 276 white, black, and Hispanic patients in various stages of lung cancer:

1)   For most topics, the majority of respondents reported that physicians communicated "not at all" or "a little bit."

2)   Low ratings were frequent for discussion of emotional symptoms, confidence interval, practical needs, spiritual concerns, proxy appointment, living will preparation, life support preferences, and hospice.

3)    Communication was inadequate for patients of different ages, stages, and races, although Hispanics were less likely than non-Hispanic whites and blacks to report inadequate communication.

Unfortunately, many of the topics reporting low rates of physician-patient communication impact patients’ health in very detrimental ways, including additional stress, impaired decision-making, and compromised outcomes. These results support research from Massachusetts General Hospital regarding the link between doctor –patient communication and outcomes. This video shares research results and insights for the future.

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-Palliative Volunteer Ethics Boundaries (Research)

Does your hospice-palliative care organization have clear guidelines regarding boundaries for volunteers? If not, consider creating or modifying them to prevent future problems. Mount Allison University in Canada researched this ethics concern with two community-based hospice programs. When 79 hospice-palliative volunteers responded to a 27-item Boundary Issues Questionnaire, they indicated the boundary of each item. These are examples of one item in each of the three major categories:

Definite Boundary Issues

(things volunteers should never do).

1) Accept money from a patient or family.

Potential Boundary Issues

(things volunteers should stop and think twice about doing)

2) Accept a gift from a patient or family.

Questionable Boundary Issues

(things volunteers should be aware of doing)

3) Give your home phone number to a patient or family.

Would you agree with the three major labels? What are other items that volunteers might place under the three various categories? It would be interesting to know what volunteers perceive as their individual items of concerns and how they differ or agree on the boundaries relating to various items.

This research confirms the need for official boundary statements. This is information volunteers can benefit from through discussion and implementation with written policies. Keep in mind that having no clear boundary policies may lead to negative consequences later.

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 booksellers.

Hospice and Nursing Homes Blog

Volunteer Program for Older Adults: RSVP (Retired and Senior Volunteer Program, Video 3:45)

Years ago, I shared a conference keynote speaking engagement with Arun Gandhi, Mahatma Gandhi’s grandson. Although we had not met before, we both spoke highly and at length about how our grandparents’ example had inspired us to embrace service.

Mahatma Gandhi was the spiritual leader of India during the Indian independence movement against foreign domination. He implemented a nonviolent philosophy of civil disobedience that inspired civil rights movements globally. Growing up in apartheid South Africa, Arun Gandhi had already learned from his grandfather the power of transforming the opponent through love and suffering.

My grandmother modeled service in her daily living. I observed her caring for others many times in ways such as giving food to strangers who knocked on her door. I recall comments some observers made about how she was being used, and she shouldn’t be giving her food away to strangers. But I saw her smiling as she looked out the window and watched recipients gobbling up her sandwiches and fruit. And she kept right on giving, never knowing that one day her granddaughter would praise her on something called the Internet. If she were alive today, she would be telling everybody at her church.

Thank goodness for all the older adults who continue to strive to make the world a better place by giving service to others. Fortunately, they don’t have to look far to find an organization like RSVP that can channel their enthusiasm into volunteer programs where their many skills can be matched appropriately with others’ needs. RSVP means Retired and Senior Volunteer Program. This federal program, which partners with local agencies across most states, is administered locally by both public and private organizations that serve the public in some way. Because of the wide range of services available, over 500,000 RSVP volunteers choose services they feel confident and comfortable in doing. Free training is included when necessary.

Of course, true service is always a win-win opportunity. Volunteers benefit with improved self-esteem, better health, more social interactions, and more learning experiences. They can also get reimbursed for some job-related costs. Research studies indicate that volunteering leads to a more positive mental attitude and to a longer life. This video explains the many services and rewards of volunteering with RSVP:

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

Should Hospice Prison Inmates Be Released Early? (Video 1:56)

Quality end-of-life care in prison continues to grow as more prisons establish hospice programs, particularly for an aging prison population. Inmate hospice volunteers play an important role. If a terminally ill patient is in prison, attentive caregiving can be especially beneficial when given by familiar faces of those who have also experienced the prison system.

Controversial discussions continue to surround the topic of early release options for older adult inmates who are infirm and ill. Referred to as “compassionate release” and “medical parole,” supporters feel that placing these inmates in private medical facilities would be more cost effective for the prison system, especially for prisoners serving life terms and no longer considered a danger to society. Others who support victims of heinous crimes are adamant that prisoners should serve their life terms in prison regardless of their age and severity of their illness. What do you think?

Note: Grace Before Dying by Lori Waselchuk is an award-winning photographic documentary that chronicles the prison-run hospice at Angola State Penitentiary in Louisiana. She photographed the picture of the two men above. Read more about her work here.

This video presents the pros and cons of early release of aging, infirm, and ill inmates who are housed at the California Medical Facility where a hospice unit currently provides end-of-life care. 


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

Grief Support for Co-Workers and Classmates (Video 1:05)

Comforting co-workers and classmates who are struggling with grief symptoms is uncomfortable for many people. While they may have good intentions, they often lack confidence regarding what to say or do that will help mourners adjust to a loss. At the workplace and at school, many staff members and classmates may feel that only experts should handle grief support. Worried that they might cause hurt feelings, they may remain distant from those mourning. Holding back their support, however, can negatively impact their colleagues who are suffering.

Although counselors and others trained in grief management play an important role, colleagues can also make beneficial contributions. Workshops, meetings, and classes at the workplace and at schools should include time for sharing strategies everyone can incorporate to alleviate grief as a community representing individuals of the organization. Implementation of these strategies can help create workplace and school cultures where everyone feels inspired to support one another in whatever ways they can during times of grief.

Sandi Sunter, director of community development for the Hospice of the Florida Suncoast, offers suggestions for coping with a co-worker’s death 
in this video titled “Hospice Care & Grief Counseling: Dealing With a Co-Worker's Death.”

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

Approaching Death: Dying Symptoms, Caregiver Support (Video 5:31)

The body knows when it’s time to slow down and die. Each body will die in its own way and in its own time when the process starts. I have been asked on several occasions to explain some of the circumstances that may be present when death is near. This excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes addresses that:

“Among symptoms of impending death, there might be decreases in food intake, swallowing, communication; and increases in sleep, weakness and spiritual awareness. The latter might include speaking to or appearing to look at, or dreaming about persons who have already died. Patients may become incontinent, agitated, confused, withdrawn, and congested. Bright light in patients’ eyes should be avoided. Patients should be turned gently when necessary. Hospice care should provide every reasonable effort to control pain and stabilize patients to a plateau of comfort. The hospice nurse or doctor can explain any changes that cause concern during the dying process.

Some caregivers become upset when dying patients lose their appetites. Because they view food as nurturing, they want to keep giving patients more food than they need. It is important to keep in mind that dying patients with little or no appetite are not starving or in pain from hunger in the manner that is commonly understood. They are responding normally to the body’s breaking down as part of the dying process. Swallowing may be difficult for them and could lead to choking when food is forced into their mouths. They could also become nauseous and vomit from being forced to take in food they do not want. Dying patients may also want less to drink. The insides of their mouths can be moistened with droplets or a fine spray, and a lip cream can be used, especially if they are breathing through their mouths. It is not unusual for breathing of dying patients to fluctuate from quiet to noisy or to have an irregular rhythm."

As much as possible, caregivers should remain calm and give patients reassuring presence. This video titled “Palliative Curriculum - Part 6 - Last Hours of Living” presents a scenario about a daughter’s concerns during her mother’s final days.

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

Fears of Lesbian, Gay, Bisexual, and Transgender (LGBT) Older Adults: Healthcare Staff Training and Housing (Research, Video 5:11)

Lesbian, gay, bisexual, and transgender (LGBT) older adults living in nursing homes, long-term care, assisted living, and even those receiving home care from healthcare workers have increasingly been discriminated against and abused by staff and fellow residents. Damage to their emotional and physical health has been so devastating that some LGBT residents have resorted to suicide.

In a study at Yeshiva University in New York, elderly participants in community and long-term care settings reported the following fears:

1) Fear of being rejected or neglected by healthcare providers, particularly personal care aides

2) Fear of not being accepted or respected by other residents

3) Fear of having to go back into the closet and pretend their sexual orientation is different

Important solutions to this problem include a national drive to train long-term care providers in equitable and compassionate care. University of Iowa findings from a nationally representative mail-in survey of over a thousand nursing home and social service directors revealed that three-fourths of the sample had not received even one hour of homophobia training over the past five years. Directors with the most experience reported having the least training. More development and dissemination of homophobia training is critically needed along with policy changes that positively impact the quality of life of LGBT older adults.

A move for separate, but equal housing is another solution that has been implemented to counteract the inequities many LGBT seniors experience. The nonprofit, 104-unit Gay and Lesbian Elder Housing (GLEH) Triangle Square in Los Angeles, California is the first affordable housing facility for lesbian and gay seniors. “A Place To Live - The GLEH Triangle Square Story,” a film by Carolyn Coal and Cynthia Childs, chronicles the journey of seven seniors attempting to secure a home there before it opened a few years ago.

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

Massage Therapy in Hospice and Palliative Care (Research, Video 3:35)

When I reached over and held my hospice patient’s hand, she smiled saying, “Now, that’s nice.” This simple meeting of skin and energy represented her treasure for the day, week, month, or whatever amount of time had passed since her last encounter with physical affection from another human being. For many patients in nursing homes, these moments seldom came.

Although little research on the use of touch with older adults has been done, it is obvious that touching can be a positive form of communication. But touch can do so much more. When used during massage therapy with older adults, particularly those receiving hospice-palliative care, touching can improve their quality of life significantly on several levels. The Gerontology Department at the University of Kentucky compared self-reported health outcome scores among older adults regarding their use of massage therapy. Those who reported massage therapy usage in the past year had significantly better health outcome scores in the following domains:

1)  Emotional well-being 

2)  Limitations due to physical issues  

3)  Limitations due to emotional issues

These research results reinforce the beneficial role massage can play in hospice-palliative care.

This video from Everflowing showcases a touch exercise during a hospice caregivers’ training workshop. Irene Smith, who believes the healing of touch is reciprocal, narrates “The Language of Touch.” 

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Reluctant End-of-Life Caregivers: Would You Do It Again? (Research, Video 3:10)

Most people don’t set out to become caregivers. Some enjoy nurturing loved ones and find the caregiving experience challenging, but rewarding. Few people talk about caregivers who feel depressed, guilty, trapped in a hole with no way out except the death of persons in their care. Maybe they were the only sibling living near the parent, the only relative or friend with resources to provide care, or the only person willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of the situation. If they had a choice, would they do it again? Some say they would not.

In a study reported in the “Journal of Pain and Symptom Management,” factors associated with an unwillingness to become caregivers again were reviewed. Former caregivers of palliative care patients were interviewed. Comparisons between those who would do caregiving again and those who would not were made with these results:

1)   One in 13 (7.4%) former caregivers indicated that they would not provide such care again.

2)   One in six (16.5%) would only "probably care again."

3)   Increasing age and lower levels of education controlling for spousal relationship lessen the willingness to care again.

4)   Despite most active caregivers being willing to provide care again, a

proportion would not.

This Visiting Nurse Service of New York video titled “How to Relieve Stress When Caring for an Aging Parent or Spouse” presents ways to cope with caregiver stress.

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

Diabetic, Hospice Amputee Outruns Death: “World Champion” Poem

Skoney, a diabetic amputee who was also mute and partially blind, epitomized “down, but not out.” My hospice volunteer experiences with him at the nursing home inspired me to write “World Champion,” a poem about his long-distance death journey. Although Skoney endured several close calls with death, he repeatedly overcame them until he eventually died one day. Observers couldn’t understand why he didn't give up sooner. Didn’t he know that death would make him free? Because he had no legs and was such a determined survivor, I viewed him as an Olympic marathon runner.

World Champion

Your bedridden body

wins survival marathons,

breaks records in life's

Olympic Games.

I touch your skeletal chest,

feel spirit of an aging heart

that outruns the Grim Reaper

in back-to-back wins.

Some pity your amputated legs,

anguished moans, unexpected

comebacks when death

competes with bare existence.

No one claps or cheers

for your personal-best pace

toward the final race

when you clear each hurdle.

They don't understand

why you won't give up

when you defend each challenge

to clock more blocks of time.

Your laps for life press onward

as you struggle to the finish,

grin like a World Champion

each time you grab the gold.

© Frances Shani Parker

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Quality of Life for the Oldest Old With or Without Dementia (Quiz, Research, Video 1:06)

How happy will you be when you’re 100 with or without dementia? Little research has been done regarding the quality of life of the oldest of the old, particularly those with dementia. With more people living longer, information concerning this age group is becoming more of a priority. Due to their interactions and observations of those aging in their care, caregivers can also add insightful information on this topic.

The following questions are worth considering regarding this geriatric population. See if you can guess the answers after you read the questions:

Do the oldest old perceive their quality of life as good or not so good?

Are their perceptions of quality different from or the same as the perceptions of their caregivers?

What if the oldest old have dementia? Do they perceive their quality of life as better or worse? Do their caregivers agree or disagree with the oldsters’ perceptions?

If you were guessing the answers as you read the questions, you may be surprised by the results of a Mayo Clinic investigation involving 144 community dwellers with mean ages ranging from 93 to 94.

Research Results:

Although the overall functional ability was higher in groups without dementia, all subjects reported high overall quality of life.

And the caregivers? Caregivers perceived the subjects' overall quality of life to be lower with increasing severity of dementia. The difference in subjects' and caregivers' perception is more pronounced for the groups with dementia. Apparently, quality of life is more strongly correlated with depression than with dementia severity.

The photo above showcases Mississippi Winn, a 113-year-old woman who was believed to have been the oldest living African-American in the country and the world's seventh-oldest person. She died January 14, 2011. This video features a reportedly 130-year-old Russian woman named Antisa who may have been the oldest woman in the world at one time.

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

Family and Friends Rate End-of-Life Patient Care in Nursing Homes (Research, Hospice Video 1:00)

As much as people say they plan to die at home, most are dying in hospitals and nursing homes. What roles do family and friends who are patient advocates play? How do they feel about their experiences while their loved one is dying? Answers to these questions were topics for research at Brown University.

Telephone interviews were held with 54 close family members or friends of individuals who had spent at least 48 hours in the last month of life of a loved one in a nursing home. Respondents described the last year of life with the deceased loved one and their nursing home experiences.

These were the key themes of their areas of concern:

1)   Families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care.

2)    They noted staff members who did not fully inform them about what to expect in the dying process.

3)    Respondents reported burden and gratification in care they themselves provided which sometimes entailed collaboration with staff.

4)    Interviews also identified ways hospice care impacted families, including helping to relieve family burden.

These themes highlight the urgent need for a reduction in the family’s burden at this critical stage of caregiving a dying loved one. Also needed is improved communication so families can be better prepared at the end of the loved one's life. This includes more information about hospice care. The family’s trust in the nursing home depends on how these supports are enhanced to make their experience with a dying loved one beautiful for everyone.

This one-minute video titled “PSA #9 Nursing Home Hospice QT.mov” is funded by the Pennsylvania Department of Aging and produced by the Take Charge Partnership. The scenario presented introduces a family member to hospice care for their loved one.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” (paperback, e-book)

“Hospice and Nursing Homes Blog”

Death Ritual: Funeral Celebrating Detroit Unclaimed Dead

                                                         

Rest in peace.

On this third Wednesday of the month, I join with eight others at a Detroit funeral home. We are here to pay our respects to 28 deceased people who are both strangers and new friends to us. Our purpose is to provide a final send-off to celebrate their lives. For various reasons such as abandonment at the Wayne County morgue and hospitals or families not providing a funeral, these spirits of adults, children, and “little angels who died without taking a breath” have found their way to Perry Funeral Home in Detroit, Michigan.

This monthly ritual started about three years ago by a man who says he was driving in his car while listening to the radio one day and heard about unclaimed bodies stacking up in cold storage behind the morgue. Concerned about this increasing problem, he contacted the coroner who directed him to Perry Funeral Home where bodies were being sent for burial. Eventually, Perry Funeral Home made arrangements for members of St. Christopher and St. Paul Episcopal Church to become involved. They started the Celebration of Friends memorial services to bring formal closure to the lives of those with no other means of having this observance. Everyone is welcome to attend the rituals.

Various church members and others assist with activities during the service supporting funeral home services. Preparations include printed programs, American flags, candles, and beautiful white roses representing each deceased honoree. Roses are distributed to participants at the end of the service. Attendees are encouraged to give them to others to pray in honor of the deceased.

I sense something powerful in the room when each departed person’s earthly existence is acknowledged with an oral reading stating name (if known), date of birth, and death. Our sincere and enthusiastic response of “May he/she rest in peace” feels empowering, knowing our presence serves as testimony to their lives and our hopes for their future peace. We settle into satisfied and sing in celebration of this momentous occasion. Each one of our new friends has been claimed.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes (paperback, e-book)

Hospice and Nursing Homes Blog

How Do Hospice Volunteers Cope? (Research, Video)

There is a common perception that hospice volunteers must have a difficult time being with people who are dying. Many times I have been told, “I don’t see how anybody can volunteer to work under those conditions. It must be depressing.” I reassure them that my hospice volunteer experiences are rewarding and uplifting.  Sometimes I ask them, “Do you really think I would visit dying people week after week for years so I could be depressed? Give me a break.”

While hospice volunteers generally embrace their positive win-win service experiences, they also have challenges that require good coping skills to benefit themselves and their patients. A study by researchers at Utah Valley University reported on volunteer feedback from interviews addressing this topic. What are some coping techniques volunteers incorporated?

1)   Problem-focused coping (seeking advice from members of the hospice interdisciplinary team)

2)   Emotion-focused coping (talking with others, going to funerals)

3)   Meaning making through appraisal (religious beliefs, downward comparison of oneself with others)

4)   Physical techniques (walking, deep breathing)

5)   Talking with the volunteer coordinator

Conversing with volunteer coordinators was the most significant coping mechanism of all. This further emphasizes the importance of their role in helping volunteers succeed.

This unique video showcases Tzu Chi (Chinese) hospice volunteers who serve in Scotch Plains, New Jersey at the Peggy Coloney House at Hope Village. This is a freestanding hospice that is part of the Center for Hope Hospice and Palliative Care.

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

Organ Donations: Family Response to the Experience (Research, Video 2:47)

People have interesting ideas about donating their organs to others after they die. Perhaps you have heard someone say they wouldn’t donate their organs because their bodies would not be complete in the afterlife or on Judgment Day when they returned.  With those kinds of thoughts, imagine how difficult it must be for some people to make the decision to donate organs of a loved one. Even families who view organ donation as a means for the loved one to live on in another person may find the ordeal distressful on some level.

What do people who have been involved in the organ donation process think about their experience? Response to a 20-question survey of organ and tissue donors' families in San Diego and Imperial County (California) reported these results:

1)   Most respondents (84%) indicated that family support was the most helpful thing in dealing with their grief, followed by the support of friends (74%) and religious and cultural beliefs (37%).

2)   Most (75%) indicated that they agreed to the donation so that something positive could result from their loss.

3)   Most respondents (93%) felt that they were given enough information to make an informed decision about donation.

4)   6% indicated that the donation process interfered with funeral or memorial arrangements.

 5)  More than 95% understood that their loved one had died before they were approached for consent.

 6)  12% said they still had unanswered questions about aspects of donation.

 7) 15% indicated that discussing organ donation added more emotional stress to their overall experience.

While most respondents seem to have had a satisfying experience participating in the organ donor process and regarding grief management, some have troubling concerns that can impact them negatively over time if they are not resolved. Healthcare workers have to be especially sensitive to those involved with organ donations both before and after the loved one’s death in terms of support and grief management.

Steve Ferkau has lived with cystic fibrosis his entire life. He has almost died on more than one occasion. His life changed eight years ago when he received a new set of lungs from a young woman named Kari. This video tells their story: 


Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” (paperback, e-book)

“Hospice and Nursing Homes Blog”