Monday, July 30, 2012

Compassionate Direct Care Workers with Patients: Healthcare Photos, Stories (Long-Term Care Research, Video 3:55)

Photography is such a fascinating process. Capturing that special something which means more than words can ever say by themselves connects people at a guttural level of humanity. What if you are a healthcare worker giving ongoing caregiving support to patients as part of your job? What would you want to capture in photos to show the world what you really want to convey about your relationships with patients? How would you envision a photograph of compassionate caregiving and an accompanying story about your interactions with patients?

Research on compassionate caregiving was done by the University of North Carolina, Charlotte. The study was designed to understand the views of direct care workers and included 15 nurse aides and medical technicians working in an assisted living and special care assisted living community for people with dementia. Participants were given digital cameras to create photographs showing what caregiving meant to them. Discussions, photographs, and written and oral stories revealed participants’ perceptions about their essential relationships with patients, not their required care relationships.

Like all direct care workers, doctors are also expected to demonstrate compassion in their care of patients. University of California San Diego Medical School is preparing aspiring doctors for practicing caring skills. In this video titled Putting The Care Back Into Health Care, KPBS Health Reporter Kenny Goldberg shares a compassionate care story of medical student Pritha Workman.

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Monday, July 23, 2012

After Death To-Do List: Can You Add to This Checklist?

A sun has set. Someone has come face to face with the Other Side of Through.
This checklist includes tasks to do immediately after death:

  1. Some airlines have bereavement or compassion fares available for family members traveling for an imminent or actual death. These fares are discounted off the full price, but may not be the lowest fares available.
  1. If possible, the exact time of death should be recorded. Loved ones may want to spend time with the deceased. Institutions where deceased persons lived will have procedures to follow regarding death.
  1. Family  members, hospice staff, and possibly others such as a spiritual advisor and a mortuary for funeral arrangements, should be notified.
  1. Several certified copies of death certificates will be needed to collect insurance and other death benefits. These copies can be obtained from mortuaries, vital statistics offices, county health departments, and online at county and state Web sites. Wills, trusts, birth, marriage and divorce certificates should be available. Social security cards, veteran papers, an obituary, and other documentation will be needed.
  1. Family members may want to notify newspapers about publishing death notices and obituaries announcing the time and place of funeral or memorial services.
  1. Arrangements with an online memorial service, often affiliated with newspapers, can ensure that those who do not attend funeral or memorial services in person will have the opportunity to participate online.
  1. Contact should be made with insurance companies, unions, fraternal organizations, government offices, banks, credit unions, credit card companies, and real estate agencies to change titles if necessary.
  1. Employee benefits from all previous employers should be investigated.
  1. Arrangements for child care and out-of-town guests must be considered.
  1. In the midst of all this activity, family members and friends should also consider their own feelings about death and the person who has died. The occasion that they may have been expecting while the loved one was ill has finally come. A life has been lived.
Information above is from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Tuesday, July 17, 2012

Dementia Patients Eating (Alzheimer’s Research, Hospice Volunteer Story)

“Food? What food?”

As a hospice volunteer in Detroit nursing homes, I had contact often with residents not assigned to me. My hospice patients were always my primary concern, but most of them shared rooms with up to three other people. At mealtimes, my patient and I shared a table with six other residents. In the excerpt below, I am the only one at the dinner table without dementia. Due to limited staff, I knew I would have to supervise, encourage, and generally keep an eye on everybody at the table. A public school principal, I was used to multi-task management and didn’t mind assisting them at all.

I continued talking to Naomi (my hospice patient) and assisting her while monitoring others at the table. I noticed that Petra had not touched anything. Petra was not a very independent eater, but I knew she was physically capable of feeding herself by any means necessary.

“Petra, your food is just sitting there getting cold. You have a whole tray of delicious things to eat. You should eat some and see how good it is. You’re a good eater. Eat your food.”
“Food? What food? I don’t have none.”
“The food on this tray is all for you, Petra. This is your food tray right in front of you. Watch me point to each item. You have coffee, juice, milk, mashed potatoes, fish, broccoli, bread, and fruit. That’s your name spelled P-e-t-r-a.”
“That’s not my name. My name is Petra. That’s somebody else’s name. That’s not my name. I know my name.”
“Well, that is still your food on the tray. You should eat before it gets cold. Go ahead and eat. Give it a try.”
“Eat? Eat what?”
“Your food, Petra, your fish, potatoes, and everything else.”
“Fish? What fish? I don’t have none. Do you see a fish here? I don’t see a fish. I don’t have none.” 
(Note: Nowadays, I would omit some of the above conversation to keep her calmer and more focused on eating.)

From previous experience, I knew that Petra and I could go on roaming forever around this same circle. Luckily, today she was sitting next to me. I gave her a taste of the fish because I knew she liked it. Then I placed her fork in her hand and started her off eating. I did this in steps by steering her hand and giving her directions on putting food into her mouth, chewing, and swallowing. Patients with dementia needed tasks broken into simple steps. Usually, she ate for a while by herself, even with her hands, once somebody started her off. But without any help getting started, she would sit and look at the food she said was not there. My other hand continued to assist Naomi.

“Don’t do that! Leave my food alone! Get your nasty hands off my plate! Help! Can somebody help me?” screamed a resident at our table as if she were under attack. All the nurse aides were occupied feeding residents at other tables and experiencing their own mealtime problems. I was resigned to be the unofficial table captain. I told Roscoe sternly to leave Charlena’s food alone. He gave me a confused look, pretended he didn’t know what I was talking about, but betrayed himself with a silly smirk he thought I didn’t see. I leaned across the table and directed his attention to his own plate by putting his spoon in his food. He picked up his spoon and started eating again. Then I reassured Charlena that everything was okay, and she could finish eating. Charlena smiled with an air of triumph. Roscoe was in trouble, and she relished knowing she helped to get him there.

Rita had been watching me help Naomi and Petra eat. Now, she was attempting to feed George, but with her own used utensils. George had his mouth open obligingly, anything to help the cause. I interceded before any damage was done. By this time, several residents had spilled food on the table or the floor and had food stains on their bibs. Petra had to be restarted twice to eat the food she insisted she’d never received. I had stood to lean across the table two more times to settle other table disputes involving food and different residents.

Naomi ate right along during all the interruptions. I had been giving her ongoing praise on how well she was doing. I also praised others at the table when they did well. They savored the attention, and Naomi wasn’t the least bit jealous. She had already told the others that I was her guest and even offered me food, which I declined. I hadn’t gone there to eat and couldn’t even think about eating if I had. When one resident was praised, another would often say, “Look at me. I’m eating, too.” This reminded me of students at my school who said the same thing when someone else was praised. I laughed, thinking the world was a universal classroom. Maybe the stars in the sky were created to be placed on billions of people’s foreheads when they did something praiseworthy.

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

My experience above is consistent with research findings on factors affecting independent eating among elderly patients with Alzheimer’s disease. Published in Geriatrics and Gerontology International, this Alzheimer's research study on independent eating is the first to generate objective data showing that difficulty in beginning a meal is a factor that hinders feeding independence by older adults with Alzheimer’s disease. The study also concludes that eliminating environmental interference factors and providing assistance promoting beginning a meal are necessary to assist older adults with Alzheimer’s disease.

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 9, 2012

Hospice-Palliative Care Volunteers: Why They Do It (Research, Video 4:44)

Many people wonder why hospice-palliative care volunteers serve patients who are terminally or chronically ill. Here are some answers researched by the Department of Psychology at Mount Allison University in Canada. Participants in the volunteer research included 41 hospice-palliative care volunteers from community and hospital-based programs. They were asked these questions with the following responses:

1)    What aspects of your work provide you with the most (and least) satisfaction?
In five of the nine programs involved, volunteers said that feeling appreciated by the patients and families they support gave them great satisfaction.
Boundary issues and/or role ambiguities were mentioned among the least satisfying aspects of their work by volunteers in four programs. (Volunteer coordinators should note this as part of ongoing training.)

2)    Why do you continue to volunteer?
Volunteers in all nine programs mentioned that they continue to volunteer because it makes a difference and meets a need in other people's lives.

     3) Why would you stop doing this volunteer work?
Among the reasons given for potentially stopping volunteering were a family crisis, burnout, old age, and other commitments.

Many kinds of activities are available for hospice-palliative care volunteers. Among services needed in addition to direct patient care are opportunities in community education, fundraising, and office work. Potential volunteers should also consider using special talents or unique job skills that they already have. Haircuts @ Home is a volunteer program of San Diego Hospice and The Institute for Palliative Medicine. This video titled Haircuts @ Home: San Diego Hospice Volunteer Program features two volunteer hairdressers giving haircuts to hospice patients.

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Monday, July 2, 2012

Patient-Caregiver Loneliness Solutions (Research, Video 1:42)

If you are around terminally ill patients and their caregivers on a regular basis,
you may have noticed the following just as I have:

1)   Patients miss personal contact with friends and family who may not be able to visit them regularly, particularly if patients live at new locations such as nursing homes. Some may not visit because of transportation issues or because they find the idea of visiting a hospice patient in person too depressing. I had a patient once whose mother refused to visit him due to the neighborhood where the nursing home was located.

2)   Patients want to feel more empowered and in control of their lives. They want to be able to initiate interesting conversations about current events, recent stories about family and friends, and feel like they are making exciting contributions to conversations that welcome their input.

3)   Caregivers experience the loneliness of not being able to socialize with family and friends freely the way they did before they became responsible for someone terminally ill. Some friends and family may have stopped inviting them out because they think caregivers will probably not be available. Some may feel awkward talking to caregivers in person about their problems.

4)   Caregivers often feel stressed out spending so much time being caregivers, often with few outlets for outside communication. They can benefit from stimulation beyond their caregiving world and feel like life isn’t passing them by.

Research often validates what we already observe simply from living life.
When I ran across loneliness research comparing the loneliness experiences of the dying, their caregivers, and the general population, I began drawing my own conclusions based on my own observations. The Institute for the Study and Treatment of Psychosocial Stress in Toronto, Ontario, Canada performed research involving 37 dying cancer patients, 78 caregivers and 128 participants from the general population. All responded anonymously to a 30-item questionnaire describing their experience of loneliness.
Results indicated that dying patients and their caregivers had significantly higher scores than the general population did. These results are another wake-up call emphasizing the importance of supporting patients and caregivers. The average person can help patients and caregivers in several ways:
1)   Offer to assist a patient and caregiver by temporarily relieving some of their burden physically or financially.
2)   Share uplifting activities with them. Welcome their input in conversations.
3)   Keep them informed about services that can help them. Aid them in getting the services.
4)   Be a good listener and offer encouragement.

This video titled I Feel Socially Isolated: Caregiver Confessions with Leeza Gibbons gives more loneliness solutions that can benefit the patient-caregiver experience:

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.