Women’s Hospice, Cancer Healthcare Disparities (Research, Video 1:37)

Healthcare disparities are inequalities that exist when members of certain populations do not benefit from the same healthcare status as other groups. These disparities can be related to racial-ethnicity, socioeconomics, gender, age, geography, and more. They are recognized by the Centers for Disease Control and Prevention, the American Medical Association, and other reputable major healthcare organizations. Being proactive in efforts to eliminate them is not only a healthcare issue, but a moral one.

Hospice Care Disparities Research

Quality of end-of life care depends a lot on timely referral to hospice care. Lack of hospice services often translates into less pain management. A growing body of research indicates that several types of cancer are referred to hospice very late. These late referrals indicate racial-ethnic, sociodemographic, socioeconomic, and age disparities. In a study of patients over 65 with ovarian cancer, a higher proportion of black women, women in the lowest income groups, and women receiving fee for service Medicare were never referred to hospice care. A substantial proportion of older women with ovarian cancer were referred to hospice care only when they were very near death.

Breast Cancer Mortality Racial Gap Disparities Research 

The New York Times recently reported research on breast cancer mortality trends in 41 of the largest cities in the United States. Results indicate that the mortality gap between black and white women has increased in the past twenty years. The chance of surviving breast cancer correlates strongly with the color of a woman’s skin. Black women with breast cancer are about 40 percent more likely to die of the disease than white women with breast cancer. Dr. Steve Whitman, director of Sinai Urban Health Institute and the study’s senior author emphasized that this had nothing to do with genetics. He stated further, “It’s undeniable that this is systemic racism,” and that the system is arranged in such a way that it’s allowing white women access to the important gains we’ve made since 1990 in terms of breast health, and black women have not been able to gain access to these advances.”

You can read more about cradle-to-grave African American healthcare disparities at this blog post: https://www.linkedin.com/pulse/african-american-pain-treatment-disparities-emergency-parker?trk=mp-author-card

In this video, Dr. Karen L. Kruper, co-director of City of Hope's breast cancer program, discusses her research in healthcare disparities and quality of life outcomes.

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

Older Adult Writing Workshop, Religion and Mental Health (Research, Gospel Video 3:09)

Recently, I facilitated a Poets and Writers, Inc. older adult, writing workshop in which participants wrote personal stories about successful aging after 60.  I noticed that their stories had continual references to religious reasons for overcoming challenges. They spoke of having prayer partners, enjoying numerous blessings, reading the Bible, and just being alone talking to Jesus. Their praise of a Higher Power was so strong that it became common during readings for someone to shout out a religious affirmation such as “Give God the glory!” or “Thank you, Father!” when fellow writers shared their experiences. One man included the partial singing of “His Eye is on the Sparrow” as part of his presentation. A woman’s story revealed that music talks to her with “I’m Gonna Make It After All” being her favorite gospel song.

Research shows that several aspects of religion such as prayer, meditation, coping strategies, service attendance, relations with God, and congregational support have positive influences on mental health. This national research on older adults listening to religious music suggests similar benefits with these results:

1) The frequency of listening to religious music is associated with a decrease in death anxiety, increases in life satisfaction and self-esteem, and a sense of control.

        2) The frequency of listening to gospel music is associated with a decrease in death anxiety and an increase in a sense of control.

        3) These findings are similar for blacks, whites, women and men, and individuals in low and high socioeconomic groups.

Religion is an important socioemotional resource linked with positive mental health for older adults. This study shows that listening to religious music may promote psychological well being in later life. Because religious music is so available, it can be a valuable resource for promoting mental health later in life.

Growing up, I had the good fortune of listening on the radio to Mahalia Jackson, whom many revere as the greatest gospel singer ever. Called the Queen of Gospel, Mahalia became one of the most influential gospel singers in the world and was heralded internationally as a singer and civil rights activist. You can view Mahalia Jackson on this video singing “When the Saints Go Marching In.”

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

Visiting, Volunteering Advocates for Nursing Home, Long-Term Care Residents

Some loved ones and volunteers think that visiting nursing home residents is a purely social call. They want to remind residents that they are still loved and decrease their loneliness. They want to check on how loved ones are doing in very general ways so they can report back to relatives, church members, colleagues, coordinators, and others about a simple level of patient progress to soften their worries. What they often don’t do, in addition to socializing, is see themselves as healthcare advocates who should be seriously evaluating the quality of residents’ lives in terms of appearance, conversation, environment, interactions with others, and unmet needs. What’s really important is that visitors and volunteers have a clear understanding of their roles as active patient advocates.

  

People will have personal approaches as to how they can most effectively serve as patient advocates with visits more than social. I write about my true observations of visits by a caregiver named Lonnetta in my book. She always impressed me with the seriousness of how she viewed her role as visitor and caregiver whenever she dropped by to see her sister. While I would not recommend Lonnetta’s approach for everyone, it worked for her. She was laser-focused on the fact that, above all, she was there as an advocate for improving the quality of life of Sister, her loved one.

(Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes)

“Lonnetta’s eyes surveyed Sister’s condition. Was her hair combed? Were her clothes and linen clean? Did she appear overly medicated, hungry, depressed? Did she have any mysterious bruises? Lonnetta was evaluating Sister’s care at the nursing home. Sister’s mind was fading with dementia. It was hard for her to explain what went on when Lonnetta wasn't there. But, if Lonnetta wasn’t satisfied with her sister’s care, she made her voice heard until the problem was corrected. She wasn’t the kind of woman people wanted to agitate, particularly if she had already tried to work with them in a calm manner. With a black-belt tongue that could give air a whipping and make dinner trays tremble, Lonnetta didn’t care what people thought when she finally caused a scene. All she cared about was Sister.

Employees at the nursing home knew that Lonnetta did an evaluation during her visits, which were scheduled at different times. That way, they never could be sure about the time she would arrive. Conscious efforts were made by employees to be in compliance, even though they didn’t always succeed. Lonnetta checked Sister’s personal belongings located in her closet. Several caregivers had complained about patients’ clothes being missing and a few gifts that had disappeared for unexplained reasons. One of my patient’s portable oxygen tanks that had been provided by hospice turned up missing. I checked everywhere, but no one knew what happened to it. Another patient had an overcoat missing. He couldn’t take a car trip with his family until he could borrow someone else’s coat. Lonnetta took Sister's clothes home and washed them, so she could keep track of them better.

Lonnetta was diligent about taking care of her sister.  Her method wasn’t perfect, but it was better than no method at all. For the most part, it seemed to work, but there were still times when she had to raise the roof with a complaint about Sister’s care. Sister was one of the lucky residents who had a persistent advocate with a personal interest in her welfare and the quality of life to which she was entitled.”

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

Disabled Older Adults: Independence with Dignity (Research, Video 1:32)

Little is known about disabled older adults who live independently during their daily living experiences. For that reason, a national study on older adult disabilities was done. Participants over age 50 were interviewed once at various times during their last 24 months of life in order to calculate the prevalence of national disabilities estimates. A disability was defined as a need for help with at least one of the following daily activities: dressing, bathing, eating, transferring, walking across the room, and using the toilet. The following results were determined with 8,232 participants:

1. The prevalence of disability increased from 28% two years before death to 56% in the last month of life.
2. Those who died at the oldest ages were much more likely to have disability two years before death.
3. Disability was more common in women two years before death.

Those who live to an older age are likely to be disabled and in need of caregiving assistance many months or years before death. The following video based on the award-winnning documentary titled “Dominick and Margaret” features the perspectives of a disabled man and woman. These two have made great strides in maintaining their independence and in encouraging others who are disabled to do the same:

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