Tuesday, October 28, 2008

Homeless People: Advance Directives and Hospice-Palliative Care (Video 1:26 mins.)

When you see homeless people, you might wonder how they came to that condition, why some refuse to leave the streets, if they really care about their health. What about their end-of-life preparations? They probably aren't concerned about completing Advance Directives. Right? Wrong.

There are few studies on the homeless and their preparation for end-of-life care. However, a study by the Center for Bioethics at the University of Minnesota has some convincing results that homeless people do care about completing Advance Directives. The research involved fifty-nine homeless people recruited from drop-in centers. Half were given written instructions to complete Advance Directives in a self-guided manner. Others were given the same directions with guidance in completing them.

The overall completion rate was 44%. A higher completion rate of 59% was earned by those who received guidance in completing the forms. The rate of completion for the self-guided group was 30%. Among all participants who completed their Advance Directive forms, there was a significant decrease in the frequency of worry about death from 50% to 12.5%. Those who filled out the Advance Directive forms increased their plans to write down their end-of-life wishes (56% to 100%) and plans to discuss their related wishes with someone (63% to 94%).

This research concludes that homeless people can appreciate being afforded the opportunity to complete Advance Directives. Although some will complete the forms without help, when time is taken to assist them, they can be especially successful in participating in their end-of-life preparations.

You can read more here about this research from the “Journal of General Internal Medicine.”

This video describes St. Michael’s Nazareth House, where hospice and palliative care are provided for terminally and seriously ill homeless patients.

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

Monday, October 20, 2008

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, 

Monday, October 13, 2008

Reading Levels of Hospice Bereavement Materials

The average reading level of most newspapers is 8th grade or below. This implies that most adult readers have a better comprehension of reading materials within that average range. With that in mind, what do you think the average reading level range is for hospice bereavement materials?

The “American Journal of Hospice and Palliative Care” reports this in results of a study by Morehead State University in Kentucky. Bereavement literature, including letters to families, as well as educational and resource materials available to families, caregivers, and the public, were rated in terms of reading levels. The Simplified Measure of Gobbledygook (yes, that’s the name), a readability process that is widely accepted by the literacy community, was used. Results of the study concluded that hospice bereavement materials are written at just above a 10th grade level. These results indicate a serious need for adjusting reading levels of hospice materials to levels more appropriate to those of the general public.

You can read more here about this study on reading levels and hospice bereavement materials.

As an educator, I want to emphasize the importance of having written materials at an appropriate reading level for the targeted audience. The Simplified Measure of Gobbledygook, which is also called SMOG, is a readability process that is widely accepted by the literacy community. It estimates the years of education a person needs to understand a piece of writing. You can read more about readability formulas and use a free SMOG text readability consensus calculator here:

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

Sunday, October 5, 2008

HIV/AIDS and Senior Citizens (Video 2:36 mins.)

Did you know that, according to the 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. Compared to HIV negative seniors their age, this population is more likely to experience far more health challenges, including memory problems, depression, liver and kidney problems, and a bone disease linked to medications they take.

Any discussion of HIV/AIDS and seniors must include the importance of their using safe sex practices. Because many senior women are postmenopausal, they may not use condoms with the vigilance they would for preventing pregnancy. More sexual experimentation among seniors, including some increased by drugs like Viagra, also promote the likelihood of unprotected sex. Seniors must be committed to not taking sexual risks.

This video titled “Senior with HIV/AIDS” presents more information and insights on this critical topic.

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.