• 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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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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I’ve had the opportunity over the past 15 years to be involved with people at the end of their lives, first as a documentary filmmaker and more recently as a personal historian and hospice volunteer. What I have learned from first hand experience and the growing body of academic research is that telling life stories can have a therapeutic effect on the dying. The process of recording and preserving life stories provides the terminally ill with:

• Affirmation: I’m more than my disease. Those caring for me have acknowledged all of me.

• Legacy: Something lasting will transcend my death. There’s hope that I will be remembered and that my story will provide some comfort to my family in their bereavement.

• Purpose: By doing this work there is still meaning to my life. I am contributing to others.

• Pattern: I see more clearly a purpose and meaning to experiences that often seem random and discontinuous.

• Support: Having a care provider, friend, family member or personal historian listen to my life story bears witness to who I am and the significance of my journey.

For any of you working with palliative care patients or caring for a dying family member,  I strongly encourage you to consider introducing some life story activity into your care.

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Dr. Samuel Johnson

History can be formed from permanent monuments and records; but lives can only be written from personal knowledge, which is growing every day less, and in a short time is lost forever.

Samuel Johnson

People at the end of their lives realize all too clearly Samuel Johnson’s warning that time is running out. As a hospice volunteer, I have recently initiated a pilot project at our local hospice that allows patients to audio record their life stories. A trained volunteer guides the patient through a conversation about his or her life and this is then transferred to an audio CD to be given to family or friends.

We don’t need to wait until the end draws near. We can start today to capture our stories and the stories of our loved ones. If you haven’t started yet, I urge you to do so. None of us know what will happen tomorrow.

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• Negotiate how much time your subject feels he/she can handle in any one interview.
• Carefully monitor the strength of your subject while conducting the interview. If you sense he/she is fading, ask if you should stop or continue.
• People at the end of life can’t always be at their “charming best”.  If you find that you’re sometimes met with sharpness or even anger, don’t take it personally. It’s not about you.
• Be calm and mindful with a terminally ill person even if you’re not.
• Time is of the essence. Cover the most important topics first. You may not have time to complete the whole story.
• If you can’t find a quiet space and must be in a room with others, check with your subject about confidentiality. He/she may feel uncomfortable talking if others can listen in.
• Some medications can make people forgetful so make sure you know what material you’ve  covered. You may need to remind your subject that he/she has already spoken on a particular topic.
• Your subject may have difficulty hearing. Remember to sit close  – no more than 3 feet away and to speak clearly and with sufficient volume to be heard.
• Be flexible. Don’t be surprised if an interview session you’ve arranged has to be canceled at the last minute. A terminally ill patient’s condition can change dramatically in a short period of time.
• Take care of yourself. Working with someone who is dying is emotionally draining. Make sure you do things that bring you nourishment and strength, such as listening to your favorite music, meditating, doing a vigorous workout, or taking a long relaxing bath.

Photo by kenna takahashi