Entries tagged as ‘Palliative care’
In Part One, I wrote about the need to be familiar with the academic research on life stories and palliative care. In Part Two, I want to highlight five other factors to consider when establishing a life stories program at your local hospice. If you want to be credible and succeed, here’s what to do:
- Become a hospice volunteer. This is the route I took. If you’re going to work with people at the end of life, it helps immeasurably if you’re trained as a hospice volunteer. First, you gain experience and a level of comfort being with people who are dying. Second, it signals to the hospice administration that you are serious and committed to helping patients in palliative care. Third, and most importantly, you become a familiar and trusted part of the hospice care team.
- Keep your hospice “life stories” work separate from your personal history business. It’s critical to your success in establishing a program to assure hospice administration that you’re not using the hospice to recruit clients for your business. I’ve been scrupulous in not mixing my business with my hospice work.
- Find a hospice manager who’ll champion your idea. In most cases this individual will be the person responsible for volunteer services or it might be the manager of psychosocial services or spiritual care. This will be the person you’ll need to convince that a life stories program is worthwhile and complements other hospice services. This manager will also have to bring other members of the hospice management team on board with your idea. It’s important that you establish a good rapport with your “champion”.
- Keep it simple. You want to keep the time and costs involved to a minimum, especially because you’re providing a free service. This is why the program I initiated at Victoria Hospice only offers unedited audio recordings of patient interviews. Do make sure that the Hospice covers the cost of any materials you provide.
- Build in a program to train other life story volunteers. It’s inevitable that you’ll soon find there are more requests than you can handle. Besides, you’ll not be able to devote all your time to offering a free service unless you’re fabulously wealthy! Here’s another point to take into consideration. Ideally, you should be planning for a program that will continue even when you’re no longer involved.
Photo © Dušan Zidar | Dreamstime.com
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Categories: End of life · How to · Life stories · Palliative care · Personal historian
Tagged: End of life, hospice, How to, Life stories, Palliative care, Personal historian
Those of you interested in building a sustainable life stories program at your local hospice will need more than good will and enthusiasm although that helps. I hope that the experience I gained in establishing a life stories service at Victoria Hospice will be of help to you.
One of the factors that weighed in my favor was the growing academic research supporting the value of life stories. It’s not uncommon for some medical professionals to see life stories as a frill, not something that can complement end-of-life support. Being armed with the relevant research can bolster your proposal.
Here’s a suggestion. Before attempting to initiate a hospice life stories program, familiarize yourself with the research. Two studies in particular that I’d recommend are :
Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life. Harvey Max Chochinov, Thomas Hack, Thomas Hassard, Linda J. Kristjanson, Susan McClement, and Mike Harlos. Journal of Clinical Oncology. 2005; Vol. 23, No. 24
Ninety-one percent of participants reported being satisfied with Dignity Therapy; 76% reported a heightened sense of dignity; 68% an increased sense of purpose; 67% a heightened sense of meaning; 47% an increased will to live; 81% reported that it had already, or would be of help to their family.
Legacy Activities as Interventions Approaching the End of Life. Rebecca S. Allen, Michelle M. Hilgeman, Margaret A. Ege, John L. Shuster, Louis D. Burgio. Journal of Palliative Medicine. September 2008, 11(7): 1029-1038. doi:10.1089/jpm.2007.0294.
Intervention patients reported decreased breathing difficulty and increased religious meaning. Caregivers and patients reported greater social interaction on the part of the patient. All participants in the intervention group initiated a Legacy activity and reported that Legacy improved family communication. Legacy interventions hold promise and are simple to implement.
Other studies of older people and reminiscence have also shown promising results. One in particular is:
Evaluating the Impact of Reminiscence on the Quality of Life of Older People. A report by the Economic and Social Research Council about a piece of research on reminiscence they carried out with 142 older people in 2003.
Reminiscence activity results in psychological benefit for older people. Older people in our study who participated in activities were found at the end of the period of intervention to have better psychological morale and less psychological morbidity, and show more positive emotion and less negative emotion, than older people in our study who had not participated in our activities.
A pioneer in the interdisciplinary study of aging is Robert N. Butler. One of his seminal articles, Age, Death, and Life Review, is a must read. This article originally appeared in Living With Grief: Loss in Later Life, Kenneth J. Doka, Editor, © Hospice Foundation of America, 2002.
The life review, as sometimes manifested by nostalgia and reminiscence, is a natural healing process. It represents one of the underlying human capacities on which all psychotherapy depends. Some of the positive results of a life review can be the righting of old wrongs, making up with estranged family members or friends, coming to accept one’s mortality, gaining a sense of serenity, pride in accomplishment, and a feeling of having done one’s best.
In Part Two, I’ll look at some of the practical steps that will help ensure the successful implementation of a hospice life stories program.
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Categories: End of life · How to · Life stories · Palliative care · Personal historian · Uncategorized
Tagged: End of life, hospice, How to, Life stories, Palliative care, research, Resources
Previously I have written here about interviewing people who are living with a terminal illness. There are benefits for patients in capturing the stories of their lives and conveying special messages to loved ones, but a word of caution. It can also be a time when traumatic incidents from a person’s past can resurface. These could involve physical or sexual abuse, loss of a child, and so on. You’re not likely to encounter such stories but it does happen. It’s happened to me. What should you do if such a situation arises? Here are my suggestions.
- Stop recording. People can forget that their words are being recorded and will eventually be heard or read by family members. You must ask your subjects if this is information they want others to hear. If it is, then when you begin recording again you need to say on the recording that you have spoken to you subjects and they have expressed a wish to continue with this aspect of the story. If on the other hand they say no, then you will want to ensure that all references to the incident are removed from the recording.
- Remember you’re not a therapist. It’s important to remind yourself that your role is not to help people mend. You’re there to facilitate the recording of a life story. However, it’s wise to have the names of several trusted counselors that you can refer people to should the need arise. If your subjects are clearly distressed by past events, you can suggest that they might want to talk to a counselor.
- Bear witness. It’s possible that your subjects don’t need or want any therapeutic intervention. And they don’t want this part of the story recorded. They may only want to relieve themselves of a terrible burden that perhaps no one knows about. Telling you, in confidence, is a way to bring some closure to a difficult episode in their lives. Listen and bear witness. Do not explore, suggest, or otherwise engage in any therapeutic activity. If you sense you’re getting in well over your head, it’s time to suggest to your subjects that they talk to a counselor.
Chances are you’re never going to encounter such a situation. But you want to be prepared in those rare cases where your interview unlocks some traumatic event.
Photo by Kevin Rosseel
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Categories: End of life · Interviewing · Life stories · Palliative care · Personal historian · Tips
Tagged: bearing witness, caution, End of life, How to, Interviewing, Life stories, Palliative care
