Cancer, Dementia: End-of-Life Bias, Relationship (Research, Video 2:36)

Do cancer patients with dementia receive less aggressive treatment in end-of-life care? These patients may not be capable of making decisions for themselves, but this should not negatively impact their medical treatment. In a nationwide study of cancer patients with dementia, this theory was tested. 

Medical interventions, including intensive care, palliative care, invasive procedures, and advanced diagnostic testing, were calculated for the final month and three months of life. The following care was noted for cancer patients with dementia:

1)   Longer hospital stays

2)   More intensive care unit stays

3)   Less palliative care than the non-dementia patient

4)   Higher likelihood of receiving invasive procedures, including cardiopulmonary resuscitation, endotracheal intubation, mechanical ventilation, urinary catheterization, and feeding tube

5)   Less likelihood of undergoing chemotherapy and diagnostic procedures

In conclusion, patients with cancer and dementia are more likely to receive intensive care and invasive procedures, but less likely to undergo advanced diagnostic testing, chemotherapy, or hospice care than those with cancer but without dementia.

This kind of biased medical care is not patient-centered or moral. Caregivers of patients with dementia should be especially vigilant in monitoring the care they receive.

Another study about cancer and dementia concludes something very interesting about the relationship between the two. This video affirms that patients with cancer are less likely to develop Alzheimer's disease (the most common form of dementia), and patients with Alzheimer's disease are less likely to get cancer.

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 Disparities: African American Children (Research, Video 2:48)

Healthcare disparities are inequalities that exist when members of certain populations do not benefit from the same healthcare as other groups. Historically, disparities have been an ongoing tragedy for African Americans. People usually think of adults as being victimized by healthcare disparities, not children. But for African Americans, disparities are cradle-to-grave tragedies beginning at birth. Infants born to African American women are far more likely to die than those born to white women. 

Disparities include not only the high percentages in disease rankings such as heart disease, cancer, stroke, and diabetes, but also procedures such as pain treatment. Based on Children’s National Hospital researched results using the National Hospital Ambulatory Medical Care Survey, a disturbing study of America’s emergency rooms reveals that African American children receive substantially less pain control for appendicitis than non-African American children.

In America, African American healthcare disparities continue to persist and even increase in some cases in spite of countless acknowledgements of their existence by healthcare institutions, longstanding research, and numerous recommendations to eliminate the statistical inequities representing real people. There is clearly a sickness in the healthcare system, a systemic overt-covert racism or stereotypical racial perceptions of pain that is not being addressed effectively. This is not only a healthcare issue, but a moral one.

While some may see this only as an African American issue, it isn’t. Healthcare disparities impact not only individuals victimized by them, but also their families, their communities, and the nation. With generational suffering and repercussions on many levels, illnesses create long-term economic burdens and major losses of productivity.

The following video addresses the study of America’s emergency room disparities in a study revealing that African American children receive substantially less pain control for appendicitis than non-African American children.

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You can read this link about disparities in nursing home incontinence care and view an incontinence care video. 

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

End-of-Life Visions (Video 2:30)

End-of-life visions or spirit sightings are not unusual for many people. As a hospice volunteer for many years, I have had several patients tell me about spirits coming to see them. Patients also spoke about visiting the spirit world, often referring to the place they visited as heaven. Discussions about these visits created opportunities for patients to express emotions openly about death while reflecting on life. They enjoyed describing their visitors and their trips. Their detailed conversations explained to me, not only whom they saw, but also the scenery and what the spirits were wearing. Pets were included in these descriptions.

Below is a true excerpt from my book Becoming Dead Right: A Hospice Volunteer inUrban Nursing Homes.

“What did you do today?” I asked Rose after feeding her.

“Me? I’ve been spending time with my people. I enjoyed myself a lot.”

“Hey, that’s great. Did your relatives drive in from Chicago?”

“No, I went to heaven. It’s the nicest place, all clean and bright with beautiful scenery everywhere. I saw my family and plenty of my friends. They all wore long white gowns.”

“Wow! I guess that’s a place you’ll want to visit again.”

“Oh, I’ll definitely be going back. I’m planning to go stay there when I die. I’ll see if I can help you get in, too.”

“Thanks. I would really appreciate that.”

Rose seemed very confident and happy about her story. Another example is the deathbed vision of of Steve Jobs, who is widely recognized as a pioneer of the microcomputer of the 1970s and 1980s. He was also the co-founder, chief executive and chairman of Apple Computer. Near his death, he was heard exclaiming, “Oh wow! Oh wow! Oh wow!” as if he were seeing an extraordinary vision. Some say these spirit sightings, which may be pleasant or not so pleasant, are chemical reactions in the brain or simply imaginary hallucinations. Others say they are angels, or even ghosts. Draw your own conclusions about end-of- life visions.

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

Bullying in Older Adult Senior Communities (Research, Video 2:49)

These are a few incidents I have witnessed or personally experienced from some bullies in older adult communities. At mealtimes and special events, I have observed residents selfishly saving empty seats for their friends who may or may not even come and denying seating choices to those who are already present when they request an empty seat. As a visitor one day, I was denied seating at an older adult community at four different tables, each with two or three empty chairs. Poor welcome. I have also experienced this as a member. A simple solution to this problem is to have groups who want to sit together wait until all group members arrive and are seated at the same time without saving seats. When implemented consistently, this system works well.

While I was a member at a senior center that had years of resistance by members over age 62 convincing management not to allow members 55- 61years old to join (unlike most centers in this metro-area), a woman I did not know stood outside my bathroom stall screaming, “People under 62 are not welcome here! Go home!” I have reported these and other bullying incidents I witnessed among residents to facility administrators who generally responded they were “working on the problem.” I have advised residents to seek help from an ombudsperson, family members, and friends. An ombudsperson is a government official who hears and investigates complaints by private citizens against other officials or government agencies.

Staff members who work in older adult communities also observe resident-to-resident bullying. This research on bullying is based on interviews with 45 long-term care staff members who reported the following:

1. Verbal bullying was the most observed type of bullying, but social bullying was also prevalent.

2. Victims and perpetrators were reported to commonly have cognitive and physical disabilities.

3. More than half of staff participants had not received formal training and only 21% reported their facility had a formal policy to address bullying.

The results above emphatically support the need for detailed policies and training programs for staff to effectively intervene when bullying occurs.

A former school principal, I know bullying is a problem that only gets worse when it’s ignored. Too often the victims are vulnerable and defenseless. Some residents, such as those targeted because of their sexual orientation, have become so depressed they have attempted or committed suicide. Observers are often too afraid to take a stand. The administration must be seriously involved. An Internet search can provide many useful resources. These are some guidelines that can help solve problems of bullying:

1. Commit to and promote principles of equality and respect for all residents/members.

2. Do a confidential needs assessment on bullying to determine how severe the problem is. General needs assessments should be done annually.

3. Have open discussions involving residents, staff, and community members about bullying, its causes, and solutions. Consultants with expertise in bullying, conflict resolution, diversity, etc. can be especially helpful.

4. Provide extensive staff training in how to handle bullying among themselves and those they serve. Continue to educate residents/members. Victims need the support, and bullies need to be reminded that eliminating bullying is an ongoing priority.

5. Review and change procedures that can decrease the power of bullies.

6. Create and disseminate a zero tolerance policy on bullying along with channels for reporting incidents and resolving them.

7. Keep in mind that the goal is to create a culture where no bullying is the standard embedded in how the institution operates. There must be consistency in implementation and visible recognition of everyone’s dignity and rights.

Bullying in older adult senior communities continues to escalate. More information and solutions can be found at this AARP site: https://www.aarp.org/home-family/your-home/info-2018/bullying-senior-housing.html.

Many older adults don’t have a lot of time ahead of them. No one should have to spend their golden years being victimized by mean-spirited bullies. Studies indicate that one in five older adults are bullied. Keep in mind that bullying is underreported. Senior communities can be breeding grounds. This video explains some of the legal and legislative aspects of senior bullying.

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