Dying in Hospitals: Family Experiences (Research, Video 3:34)

Many people still believe that most people die at home. That’s a comforting thought for them knowing that loved ones are more in control of matters such as who comes and goes, when and why they do that. Most of all, they appreciate being able to have more emphasis on non-medical dying needs. But the reality is that most people die in hospitals and nursing homes. While recent literature has focused more on the needs of caregivers in the home setting, it is important to recognize needs of family members caring for patients with advanced illness where they serve as the key intermediaries and decision makers in inpatient settings such as hospitals.

Focus groups consisting of dying hospital patients' family members can help identify the quality of their experiences. Groups involved in this research had participants aged 46-83, all female, mostly Caucasian and African American. The results of four such groups followed by interviews revealed the following eight domains about the quality of family experiences of dying hospital patients:

1.    Life completion

2.    Symptom impact

3.    Decision making

4.    Preparation for crisis and death

5.    Relationship with healthcare providers

6.    Affirmation of the whole person

7.    Post-death care

8.    Supportive services

Findings suggest the importance of good communications and relationships in meeting the clinical needs of family members. The development of more methods to assist families with the tasks involved with life completion, being prepared for a crisis and imminent death, and post-death care are needed.

Dr. Ira Byock, palliative care physician and chief medical officer of the Providence Institute for Human Caring believes that the fundamental nature of dying is not medical. It's personal. Dying cannot be encompassed only by a set of medical problems and a set of diagnosis and treatments. In this video, he explains his perspective on dying in a hospital.

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

Body Donor Benefits, Death Rituals (Research, Video 3:26)

The donation of bodies to medical science anatomy programs is a significant end-of-life legacy. In addition to enhancing research, donated bodies offer training opportunities that ultimately benefit public health. People who say they are donating their bodies are often asked,  “Why donate your body? Don’t you want a funeral, memorial service, or something?” A common belief is that bodies donated to anatomy programs are dissected, studied, and then “disposed of” in an uncertain manner. The assumption may be that the entire procedure is strictly medical and scientific with few displays of gratitude for the donations and certainly no death rituals of respect for families or persons whose bodies are donated.

What are some death ritual options available for those who want to donate their bodies to an anatomy program? If funeral services are desired with the body present, the family can contact the funeral home and make arrangements with the anatomy program before funeral preparations are made. Another possibility is to have a memorial service without the donor’s body present.

But a little known fact is that a number of U.S. anatomy programs hold memorial ceremonies of gratitude honoring body donors. These final tributes to human lives are usually planned by students and faculty and include invited guests. Various U.S. anatomy programs hold nondenominational memorial services that include theme celebrations with expressions of speech, music, poetry, essays, visual art, and dance.

Those interested in donating their bodies to anatomy programs should contact the organizations that interest them and request information. Some have websites explaining their procedures. A list of common questions and answers about the body bequest program at Wayne State University School of Medicine in Detroit, MI can be viewed. Some answers may be surprising. For example, age is not a consideration for body donation, but there are other factors such as not having major organs removed. Also, if the family wishes to have the cremains returned for burial, the University, if requested at the time of death, will return the ashes to the family.

The following video features a cadaver memorial service with more than 300 in attendance. It is presented as part of a long-standing tradition by first-year medical students at the University of North Carolina (UNC) School of Medicine.

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

Move to a Nursing Home: Staff Support (Research, Video 1:02)

Nursing homes are too often viewed as places of dread. Moving to one to live is sometimes referred to as the worst thing that can happen to a person. The reality is that sometimes nursing homes are an upgrade from a negative situation at home or even the only alternative when no one else is available or willing to provide necessary care. Being an older adult relocated to a nursing home can be quite an undertaking, but nursing home staff members can greatly enhance the transition by the ways they assist in the adjustment.

Research on nurses and personal care assistants can reveal how they provide a layer of comfort to the relocation process. Studies of interviews with residents and their families about transitioning to nursing home living can be very informative. In this research study, individual interviews were conducted with 20 care staff (seven registered nurses, five enrolled nurses and eight personal care assistants) employed at four nursing homes.

Research results identified two major themes:

1)   What’s it like for residents? - This highlighted staffs' awareness of the advantages, disadvantages, and meaning of relocation. It also focused on staffing and nursing care, other services provided, and the environment.

2)   We can make it better. - This revealed suggestions for improving the relocation process, spending time with new residents, and the importance of a person-centered approach to care.

Education of staff on relocation policies and procedures and person-centered care is essential in ensuring that residents and their families are supported in embracing this new home. Understanding the perspective of a primary caregiver who made the decision to move a loved one into a nursing home should also be considered. As this video illustrates, moving to a nursing home can be a very difficult decision. But sometimes a last resort turns into a godsend.

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

African American Healthcare Disparities Partnership: Frances Shani Parker, Sinai-Grace Hospital, Poets & Writers, Inc.

African American Healthcare Disparities: Poems and Stories About Real People

Healthcare disparities are inequalities that exist when members of certain populations do not benefit from the same health status as other groups.  These disparities could be related to race, ethnicity, socioeconomics, gender, age, sexual orientation, and more. Unfortunately, the statistics on African American healthcare disparities are particularly dismal for several major diseases such as heart disease, cancer, stroke, and diabetes. Disparities impact not only the personal lives of patients, but also their families, communities, and our nation. Many of the diseases are preventable. Generational suffering and repercussions, economic burdens, and major losses of productivity negatively influence all of us on some level.

A hospice volunteer in Detroit nursing homes for many years, I know facts, figures, and numbers can never convey the heartbeats of poems and stories I have written about many of my deceased patients. They represent statistical disparities of older adult African Americans across the country. Sinai Grace Hospital in Detroit, Michigan and Poets & Writers, Inc. in New York joined me in a partnership to make this powerful union between statistics and humanity happen. The result was a reading event held at the hospital during Nurses Week and including hospital staff members and the Metro-Detroit community. As keynote speaker, I wanted to positively inspire hearts and minds to eliminate African American healthcare disparities.

Although the reading featured my deceased hospice patients speaking through me with poems and stories, they were right there with me in spirit on this momentous occasion. I wore my skull necklace in honor of their presence. If they could have spoken to audience members themselves, they would have told them how much they dread the possibility of future generations continuing to be in harm’s way.

Disparities statistics and several literary selections about my former patients were served to the audience as they ate lunch and became nourished with enlightenment about healthcare inequities that are not only medical, but also immoral. These are two examples of former patients whom I introduced to the audience:

1.   Jim

I visited Jim weekly during his final stages of painful cancer. An African American Gandhi in his nineties, he yearned for peace. One day I made a joyous breakthrough when I pretended to be his deceased wife. Carefree and in love, we reminisced about our lives together in old Detroit. In my poem about him, “images from the past recaptured stolen pieces of pleasure from his youth.”

2.   Katherine

Katherine was a stroke survivor left with serious physical disabilities. Through poetry, I told the audience how Katherine and I visited her imaginary and lively Baptist church in Alabama. When Mahalia Jackson’s gospel music overtook Katherine’s spirit, her stiffened hands clapped “with a powerful energy that rose like a resurrected hot flash.”

Throughout the reading of several literary selections accompanied by PowerPoint images and statistics, the attentive audience connected with understanding and empathy. Saving lives was the essence of why we were all there. This rare opportunity to unite healthcare disparities statistics with poems and stories about deceased hospice patients was both needed and well received. I am honored to have shared literary testimonies in praise of their humanity and in the promotion of quality healthcare for everyone. Statistics are real people.

You can read my LinkedIn post and view a video on African American healthcare disparities here.

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

Healthcare Cultural Competence, Diversity (Research, Video 3:51)

The increasing diversity in America must be addressed more efficiently by healthcare institutions in order to meet the needs of various populations and eliminate disparities. Cultural competency includes not only racial-ethnic issues, but also disabilities, sexual orientation, and more, including the need for diversity in the workplace. Racial-ethnicity, however, is one form of diversity that particularly stands out. According to the U.S. Census Bureau, the U.S. is projected to become a majority-minority nation for the first time in 2043. The non-Hispanic white population will remain the largest single group, and no group will make up a majority. All in all, current racial-ethnic minorities are projected to comprise 57 percent of the population in 2060.   

While various forms of cultural competency are included in core curriculum standards in many undergraduate and graduate healthcare-related programs, questions remain about areas in need of strengthening for greater proficiency. Cultural competency in nursing education is an example of such a program that has been researched. In this survey research, 365 nurses participated. Results indicated that undergraduate-degree nurses scored lower than graduate-degree nurses regarding cultural knowledge. Scores on cultural awareness, skills, and comfort with patient encounters did not vary between groups. Unfortunately, both groups of nurses reported little cultural diversity training in the workplace or in professional continuing education.

Cultural competency includes the need for diversity among workers in the workplace. This video presents various examples of the necessity for improving cultural competence in healthcare:

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