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Monday, August 13, 2018

Hiding Pain from Others (Research, Hospice Poem)

Pain can be tricky when it comes to sharing the experience with others. Research on pain indicates various reasons patients are reluctant to share their feelings. Some patients will want to just be brave and handle it on their own. Others just don’t want to bother caregivers, or they think they wouldn’t understand even if they told them. Some patients can even be in denial about their own pain. But, during clinical encounters, patients may put themselves at greater risk for pain-related crises, use of hospice/palliative care on-call services, and in-patient transfers by not truthfully explaining their pain experience to those who can help.

Social workers and other palliative care providers should consistently and vigilantly inquire about how comfortable patients are about discussing their own pain. While pain management is a major focus of hospice care, I have witnessed and reported patients in pain during my hospice volunteer service. I visited Jim weekly during his final stages of painful cancer. An African American in his nineties, he yearned for peace. One day to help relieve his pain, I made a joyous breakthrough. When his pain came and his eyes were closed while I held his hand, he asked me if I were his wife. In my efforts to comfort him, I pretended to be his deceased wife whose name was Anne. I wrote this poem later about our being carefree and in love in old Detroit.

                                   Victory
By Frances Shani Parker

His weary, tucked-in body
lies in a nursing home bed.
A black Gandhi, he yearns for peace.
His days are chains of mountains
formed by pressures of frustration.

I approach him like a helpless child,
wonder how to lift his spirits.
Eyes that have seen ninety years
squint tightly as daggers of pain
pierce his cancerous form.

Intermittent moans of distress
announce his internal battlefield.
A volunteer, I visit him weekly,
try to arm him with weapons
to increase his victories.

Talk, sing or hold his hand?
Never sure, I try them all.
Words inside he wants to say
are muttered sounds
I seldom understand.

His smile engulfs the room
when I speak of old Detroit.
Perhaps images from the past
recapture stolen pieces
of pleasure from his youth.

I tell him I must leave,
promise to return. Surprising me
in his clearest voice,
he struggles to respond,
“I appreciate your coming.”
                              
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

Monday, August 6, 2018

Spirituality in the Illness Room (Research, Video 10:02)

When illnesses come, especially life-threatening ones like cancer and heart disease, many people rely on the support and comfort from sources in addition to medical healthcare. Coping skills related to spirituality with a Higher Power writing prescriptions empower many patients with a layer of strength to face each day with renewed joy in knowing their spirits are reinforced.

Research also confirms this additional patient empowerment. Spirituality research interviews were done with 10 cardiac survivors and 9 cancer survivors. Participants responded regarding how their life-transforming change occurred in the context of their life-threatening illness. Spirituality, meaning, and purpose were explained in several contexts such as connecting with family and friends, nature, art, music, and sometimes creating a relationship with God. These connections were how they coped with their illnesses.

Healthcare workers and other caregivers can create better plans of encouragement for patients when they understand and support the importance of spirituality in many people’s lives. These plans can include support groups for them that involve yoga, meditation, nature, music, prayer, or referral to spiritual or religious counselors.

The following video features a gospel song titled “Come on in the Room” sung by the Georgia Mass Choir founded by Rev. Milton Biggham. Reflecting the times and the power of spirituality, this church presentation is shared by the pastor and congregation in the context of a compelling story the pastor tells. The song lyrics are written below if you want to join in the joy. Welcome, the service has started. Come on in the room.

(Note: Click small x at top right of ad at beginning of video to block it.)

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Come on in the Room

Chorus 1

Come on in the room.
Come on in the room.
Jesus is my doctor,
and He writes out all my prescriptions.
He gives me all my medicine in my room.

Chorus 2

There is joy, joy in the room.
Joy in the room.
Jesus is my doctor,
and He writes out all my prescriptions.
He gives me all of my medicine in my room.

Chorus 3

Joy in my room.
Joy in my room.
Jesus will meet you.
The Holy Ghost will greet you.
Joy, unspeakable joy in my room.

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.

Monday, July 30, 2018

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.

Monday, July 23, 2018

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.

Monday, July 16, 2018

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