Training Hospice-Palliative Volunteers for Cultural Competence (Research, Video 1:42)

Hospice-palliative volunteers and other healthcare workers can operate with a higher level of confidence and efficiency when they display cultural competence during their interactions with diverse patients. This competency is greatly needed to foster increased participation of ethnic groups that continue to underutilize hospice-palliative services.

A study in the Greater Toronto Area (GTA) examined the current state of culturally competent care. Using 14 hospice volunteers, researchers from the Department of Sociology at McMaster University did in-depth interviews with them to gain more understanding about their cultural competency status and challenges such as misunderstandings resulting in hurt feelings. Volunteers revealed the following in their responses to the questions:

1)   Volunteers with weak levels of cultural competence said they encountered cultural clashes with patients.

2)   Volunteers revealed that they needed more education in cultural competence as part of their hospice training.

3)   There was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers.

While this research was done with a small group, it serves as an example to hospice-palliative organizations and other healthcare institutions that cultural competence issues must be addressed. Ongoing staff education is a necessary component for the successful delivery of healthcare. In addition to improving patient-staff relations, eliminating cultural insensitivity and miscommunication will positively impact patients’ quality of life.

This video explores the importance of cultural competence training for workers in a cross-cultural healthcare environment. Examples of various cultural groups and how to interact with them are explained:

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

Palliative Care or Supportive Care? Which Would You Prefer? (Research, Video 3:04)

Would a rose by any other name smell as sweet?

I have met quite a few people who don’t have a clue as to what palliative care is. Some are even in the healthcare profession. To add to the confusion, many who do know what it is refer to palliative care using various pronunciations (sound pronunciation). Then there are those healthcare organizations such as the American cancer centers that have adopted use of the name palliative care but continue to get referrals late for those needing it. Is this due to an association of the name palliative care with hospice care?  Would all these problems regarding the name palliative care be resolved by just replacing the name with a more user friendly one such as supportive care?

Obviously, the name palliative care carries several barriers that need to be explored. That’s why this research caught my interest. This study by the Anderson Cancer Center in Houston, Texas reports how the name palliative care versus the name supportive care may impact cancer patient referrals.

Can a name be a barrier to patient referrals for care? Medical oncologists and their midlevel providers (advance practice nurses and physician assistants) at a comprehensive cancer center think so. 140 out of 200 of them participated in a survey to determine the impact of the name palliative care compared with the name supportive care on patient referrals and to determine whether there was an association between demographic factors and the perceptions of the two names. What were the results?

1)    The name palliative care compared with the name supportive care was perceived more frequently by medical oncologists and midlevel providers as a barrier to referrals, decreasing hope, and causing distress in patients and families.

2)    Participants significantly preferred the name supportive care compared with palliative care. They also stated more likelihood to refer patients on active primary and advanced cancer treatments to a service named supportive care.

While these results are not surprising, where does this leave the name palliative care? Is this a matter of educating the public more to the meaning and appreciation of what palliative care can provide? Or is this a matter of phasing out usage of the term palliative care with patients and replacing it with the name supportive care? What do you think?

This video explains palliative care: “Palliative Care: What is it and who is it for?”

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”

Stereotypes About the Elderly and Effects (Research and Video 2:27 mins.)

Like many of you, I belong to several social media networks. However, there is one I seldom use, due to the immaturity I have encountered there, particularly regarding the elderly. Below is a brief summary discussion on a life-threatening topic that I initiated there about seniors and the prevention of HIV/AIDS:

“According to the U.S. Centers for Disease Control, one-quarter of the one million HIV-positive people in the U.S. are older than age 50. Half are expected to be older than 50 by 2015. People tend not to think of HIV/AIDS as an illness of senior citizens, but it is. Seniors must be committed to not taking sexual risks.”

I received over a dozen responses, some too vulgar to print here, from various people, along with degrading, so-called funny photos of old people. None took this matter seriously. These are a few examples:

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

2) “CUT IT OUT OR I WILL REPORT YOU!!!”

3) “What's considered a sexual risk for an old person? Not wearing a   diaper?”

4) “Sex also puts them at risk for hip fractures. That would seriously suck. A hip fracture and aids. Double whammy.”

5) “How about old people just stop having sex?”

So much for intelligent discussion. I am open to constructive, controversial debate, but that group “discussion” took blatant prejudice to another level. Truthfully, it is yet another example of negative stereotypes embedded in our society about the elderly. They are all over the media.

These and other stereotypes affect those who are victimized by them, and impact the elderly in detrimental ways. Research reported in Aging & Mental Health explains that negative aging stereotypes impact how the elderly see themselves and how they function. They become more dependent on others, have lower levels of risk taking, subjective health and extraversion, and higher feelings of loneliness. These are concerns we should keep in mind as we continue to advocate for eldercare improvements.

In this video titled “See the Person, Not the Age,” a young actress transforms herself into a senior and compares people’s reactions toward her. This experiment is part of the Scottish government campaign against ageism, an international problem.

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

Hospice Care in Assisted Living Facilities (Research, Video 2:51 mins.)

Many people have told me that they didn’t know hospice care exists in nursing homes. Even more would probably be surprised to know that it also exists in assisted living facilities (ALFs). I can’t emphasize enough that hospice care is available no matter where a person lives.

Reported in the “Gerontologist,” a study of hospice care in assisted living facilities was done to get detailed descriptions of end-of-life care provided by ALF medication aides, caregivers, nurses, and hospice nurses in urban and rural settings. Interviews were used to gather information. Having worked as a hospice volunteer in urban nursing homes for several years, I was interested in the results. They were very similar to what I would have expected from an urban nursing home or any other institutional care:

1)  The quality and nature of resident-staff and assisted living-hospice staff relationships are critical in promoting good end-of-life care for ALF residents.

2)   Length of the resident's stay in the facility and how well staff knew the resident were associated with the quality of the resident-staff relationship.

3)  Respectful collaboration, clear communication, use of complementary knowledge and skills of staff, and shared expectations about the care were associated with positive staff relationships.

4)  ALF administrative support for hospice patients was important.

Basically, ALFs and hospice organizations that are committed to working together with hospice programs must both support staff, patients, and families. If this sounds like an obvious conclusion, it is. Unfortunately, it is a reality that is still unrealized too often. There is a need for more successful models of this partnering system of care at both nursing homes and ALFs. From my own observations in nursing homes, especially regarding staff turnover, I know that the non-curative philosophy of hospice care requires ongoing staff inservice and monitoring to be implemented successfully.

This video relates the positive and negative transition concerns of an  elderly man (age 95) moving to an assisted living facility.

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”

Caregiving: Love, Hatred, Guilt, Joy, Resignation (Video 4:10 mins.)

A caregiver’s role can be a complicated potpourri of love, hatred, guilt, joy and resignation. During my years as a hospice volunteer, I have met caregivers who served in that role for a variety of reasons. These are three examples from my book “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.”

1) “We held a family meeting when Mom and Pops continued to deteriorate healthwise. They had reached the stage where they couldn’t live alone any longer. Mom almost burned the house down, and Pops started roaming all over the neighborhood asking people where he lived. At the meeting, everybody had reasons why they couldn’t be primary caregivers. They either lived out of town or had other obligations they said interfered. Several of them mentioned that I lived in town and didn’t have as many responsibilities as they did. I don’t know how they could make assumptions like that about what’s going on in my life. I don’t tell them most of my personal business. Anyway, I finally agreed to be the primary caregiver, but only if they would all make a written commitment with me. We made a list of what everybody would do to help on a regular basis. I can truthfully say they all are doing what they promised, including contributing money to our parents’ care. Knowing I can always count on them helps me a lot and makes my parents proud of the way we are handling things.”

2) “If you look at who’s taking care of my daddy now, you wouldn’t know he had three other children besides me. The others hardly do anything for him, and I’m always asking them to help out. Before you start thinking he was a bad father when we were growing up, let me tell you he wasn’t. If you want to know the truth, he was too good to us. My trifling sisters and brothers just took him for granted. Now, they know Daddy is confused with Alzheimer’s disease, so they use that as another excuse not to come see him. They figure he won’t miss them. My siblings are a disgrace. Everything is on me.”

3) “My mother was the kind of person who never should have had children. She was into drugs and the fast life for as long as I can remember. As a child, I prayed for her to change, but she never did. She left us alone a lot, even at night. Finally, my grandmother stepped up and raised my sisters and me. Bless her soul, she died six years ago. We made sure she didn’t want for anything. Now, my mother’s dying, and I’m the only one who will come see about her. My sisters say she’s getting what she deserves for all those years she chose dope over us. I don’t judge them because I know how they feel. I’m still angry with her myself, but I come see about her anyway. I guess I want to be a better person than she is.”

© Frances Shani Parker

Most people don’t set out to become caregivers. Some enjoy nurturing their patients 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. For an encouraging visual reminder about caregiving, I refer you to this video “Remember Me,” which is from the perspective of a patient in need of care.

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


"Remember Me", Adult Siblings, Caregiving, Solutions, Video, 

Alzheimer’s Disease: Research on Hispanics, African Americans, and Whites (Caregiver Video 2:48 mins.)

Alzheimer’s disease has both similarities and differences in knowledge, awareness, and cultural beliefs among groups defined by race and ethnicity. This has been documented in research by the University of Michigan School of Public Health in Ann Arbor, MI.

For example, both African American and Hispanic respondents tend to believe that Alzheimer’s disease is a normal part of aging. These groups were more optimistic about future research advances than whites were. On the other hand, more than whites and African Americans, Hispanics were more likely to report feeling well-prepared for handling a diagnosis of Alzheimer’s disease in a family member. In general, the research results support the need for more public education about the disease.

In this video titled “Extended Interview with Alzheimer's Caregiver, Ric Gomez,” an Hispanic caregiver, who quit his job so he could take care of his father, speaks honestly about ongoing challenges and good times they experience. His father is in the middle stages of Alzheimer’s disease.

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

Terminal Illness: A Mother’s Day Tribute (Video 5:07 mins.)

This post is dedicated to mothers everywhere, especially those who are living with or have died from a terminal illness. The accompanying video is by raindancer808, whose hometown is New Orleans, Louisiana. Honoring her mother with this Mother’s Day tribute, she writes:

“My Mom is in end stage Alzheimer's, and I wanted to do something special for her on this Mother's Day. Even though she will never see this video, it is my way of honoring her, and spreading the message that Alzheimer's is a cruel and fatal disease. For more information, please go to this Alzheimer's Web site."

Click here to view a Mother’s Day tribute.

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

Nursing Home Humor (Video 2:23 mins.)

So many negative stories circulate about nursing homes, sometimes we need to be reminded of the good times that happen there. From giggles to hysterical howls, the healing effects of laughter contribute positively to everyone’s health.

What makes people laugh in the nursing home world? Animals, children, and humorous situations involving people they know, both real and imaginary, can be hilarious. They laugh about the same things that tickle everybody’s funny bones. A suspense thriller, this video about a pug and a peacock shows why animals are so entertaining.

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

Nursing Home Reminiscence Groups: Video

For some, they were the good old days. For others, they were just the old days. Either way, they are who we are today, and we can’t seem to get rid of them completely. Everywhere we go, we push them around in mental shopping carts. Sometimes we think we’ve lost a few items permanently. Then they turn up when we least expect them. They are our memories. Lately, they are becoming topics for group sharing in facilities where seniors congregate.

Reminiscence groups, which are a form of therapy, are sessions with seniors sharing memories. They aren’t quite the same as lounge-talking get-togethers, however, because conversations are guided by a trained facilitator such as a social worker. This person presents topics and helpful comments when they are needed.

The purpose of reminiscence group sessions is to trigger brain responses through nostalgia and socializing. This is similar to the way bingo and socializing might give the mind a workout. Reminiscence also helps seniors analyze their lives by reviewing where they were, where they are, and how they want to respond to those reflections. Hospice patients often benefit from life-review forms of closure.

In our pressured world of multitasking and fast living, how fulfilling it sounds to meet with a group and talk to them about our memories. How supportive it must feel to open our hearts while listening to theirs.

If you’d like to sit back and enjoy a visual-musical portrait of one nursing home resident’s life, I invite you to reminisce, along with this video (3:48 mins.) titled “Look at Me.”

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