Tag Archives: hospice

Marge Curtis, May 1,1918 ~ December 18, 2011

Mom at twenty-three

Those of you who are regular readers of my blog know that every Monday is devoted to Monday’s Link Roundup. This Monday is different. Yesterday Mom died at Victoria Hospice at the age of ninety-three.

Mom always believed that when she transitioned to that other side, she’d be met by my Dad,  Ed Curtis, who died in 1990. I like to think she was right.  And whether by coincidence or design her death took place on their seventy-second wedding anniversary. They were married December 18, 1939.

Throughout my life Mom was one of my biggest fans and supporters. In many ways she introduced me to story telling at an early age. An avid reader, her favorite activity before going to sleep was to read a few pages from her latest book. Every morning I would eagerly run into her bedroom to sit by her bed. There, she would relate the latest installment – no doubt censoring some of the racy bits for the ears of an eight-year-old.

She also regaled me with stories from her teenage years when her family homesteaded in the wilderness of northern British Columbia.  Eagerly absorbed by a young boy were tales of encounters with grizzly bears, hunting, and snowy winter nights, hunkered down in their log cabin.

People have remarked that it’s sad that Mom’s death came so close to Christmas. In part that’s true. I certainly haven’t had time in the past few weeks to think much about the holiday season. But central to this time of year is the message of peace, comfort, and joy. And I’ve experienced all of those in a personal and profound way. Mom and I were surrounded at Victoria Hospice by loving and compassionate care. Her final days brought her comfort and her death was blessedly peaceful. And we had joyful moments – reminiscing about Christmases past, enjoying cups of her favorite tea from her favorite cup, and laughing at this comedy called life. One of the last things she said to me, opening her eyes briefly was, “Having fun?”

I miss her dearly. My world has changed forever. But surrounded and supported by my loving partner, friends, and colleagues I’ll carry on doing honor to those values she tried to instill in me – kindness, loyalty, grace, and a good sense of humor.

Thanks, Mom.

Encore! Life Stories and Palliative Care. When Time Is Running Out, What Do You Focus On?

At  Victoria Hospice we’re into the third year of a Life Stories  service for patients registered with Hospice.  This is a program that I initiated and continue to be involved with as  a trainer and a mentor for our Life Stories Volunteer Interviewers… Read more.

Monday’s Link Roundup.

In this Monday’s Link Roundup two of my favorite items are Tracking Personal Histories Across Time and a Granata essay by Mavis Gallant, Memory and Invention. Gallant, one of the world’s great short story writers, raises challenging questions for all of us involved in helping others recall memories. And Tracking Personal Histories is a meticulous recreation of a present day portrait from one taken years ago. The pictures are shown side by side and the effect is totally absorbing.

  • Hospice patients put life stories on CD, video for loved ones. “David Bishop heard his mother’s voice on the way to her funeral last year. It was coming over the car’s speakers, and she was talking about what a beautiful day it was as she sat in her kitchen…Eileen Bishop told her story to volunteers as part of the “Life Legacy” service offered through Florida Hospital’s HospiceCare. The program, one of several in Central Florida, is free and is offered to all patients willing and able to participate.”
  • Story sharing to educate. “Hoping to foster better understanding of the everyday lives of LGBTI people, the founder of digital story-sharing site Rainbow Family Tree is urging community members to share their tales of “life, love, family and loss” online.”
  • All-TIME 100 Best Nonfiction Books. “Politics and war, science and sports, memoir and biography — there’s a great big world of nonfiction books out there just waiting to be read. We picked the 100 best and most influential written in English since 1923, the beginning of TIME … magazine.” [Thanks to APH member Catherine McCrum of alerting me to this item.]
  • Tracking Personal Histories Across Time. “Sander Koot’s series Back from the Future is a pairing of new portraits of the individual with an older picture of that person from years past.. he only photographs individuals after interviewing them. “In this project, I ask people to find old portraits of themselves, of which they have good memories,” says Koot. “When talking to them about the picture, you see them reliving the happy moment. Only after I know all the details about the past of that picture, (do) we start the shoot.”
  • Life Itself: A Memoir by Roger Ebert [release date September 13, 2011] “I was born inside the movie of my life. The visuals were before me, the audio surrounded me, the plot unfolded inevitably but not necessarily. I don’t remember how I got into the movie, but it continues to entertain me.”
  • Stationery’s New Followers. “Social-media fans are embracing paper. While United States Postal Service sees a decline in mailed letters overall, tech-savvy paper-lovers—in frequent contact via blogs, Facebook and Twitter—are giving rise to a host of small stationery makers.” [Thanks to cj madigan of Shoebox Stories for alerting me to this item.]
  • Memory and Invention: An Essay by Mavis Gallant. “Imagination, all invention, will occur spontaneously – occur or interfere. ‘Interference’ means it is false, mistaken, untrue. Although I have kept a journal for years, I never look anything up. A diary is not a dictionary or the record of a meeting. Sometimes a sharp, insistent image caught in one’s mind, perhaps of a stranger glimpsed only once, will become the living source of a whole story.”

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Monday’s Link Roundup.

In today’s Monday’s Link Roundup, with the New Year days away, you’ll want to check out 13 Tips for Sticking to Your New Year’s Resolutions. If you have this week to relax, why not take some time to feast your eyes on 10 books to inspire you to make art. And for a piece of “blatant self-promotion” ;-)   I’d be remiss in not pointing you to the article A gift that lasts beyond a lifetime. It’s about my work at Victoria Hospice.

  • Lives of the dead come to life on tombstones. “A standard Memory Medallion remembrance package costs $225 and includes a barcode medallion for the gravesite, a website of eight photos and 1,000-word story and a printed biography. Family members also can record a video about the deceased that plays on smart phones that scan the barcode, called a QR code.”
  • The benefits of thinking about our ancestors. ” Anecdotally, there’s reason to believe that such thoughts are beneficial. Why else the public fascination with genealogy and programmes like the BBC’s Who Do You Think You Are? Now Peter Fischer and his colleagues at the Universities of Graz, Berlin and Munich have shown that thinking about our ancestors boosts our performance on intelligence tests – what they’ve dubbed the ancestor effect.”
  • A gift that lasts beyond a lifetime. “A free program through [Victoria]hospice matches volunteers trained in interview techniques with patients for up to five hours of digital recordings — preferably before they enter the facility.”
  • 10 books to inspire you to make art. “When I finish a long project I don’t actually collapse but rather wander around in a state of unfocused activity. When that happened yesterday I decided to settle down and read. Not knowing exactly what I wanted to read, I pulled a slew of books off my bookshelves. And because I love sorting things into piles and classifying them, I eventually ended up with this pile of ten books that never fail to pull me into their beauty.”
  • Vimeo Video School. “Vimeo Video School is a fun place for anyone to learn how to make better videos. Start by browsing our Vimeo Lessons, or find specific video tutorials created by other members.”

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Part One. Life Stories and Palliative Care: Your Questions Answered.

I recently participated in the Association of Personal Historians annual conference in Victoria, BC. One of my presentations was  Life Stories as Healing: Working in an End-of-Life Environment. In the workshop we looked at some of the skills needed and challenges faced in providing life stories for patients receiving palliative care.

Near the end of our session I asked participants to write down one “burning question” they wanted answered. We  had time for only a few. I decided that for those who didn’t have their questions answered I would deal with them here. I thought that those of you who weren’t at my workshop might also appreciate seeing the questions and answers. Next week I’ll tackle further questions in Part Two.

How does one set up a personal history program with a hospice?

There is no one right way to set up a program. Much will depend on the local circumstances. From my experience with Victoria Hospice  I’ve learned a few lessons and passed these along in two articles How to Establish a “Life Stories” Hospice Program. Part One and Part Two. For those of you interested in the possibility of a life stories program at your Hospice, these articles would be a good place to start.

Why not charge for life stories work at a hospice? Why should this work be voluntary?

If you’re a professional personal historian, you can request a fee from your Hospice for your services or provide it pro bono. That decision is really up to you and your Hospice.

As a rule, I don’t volunteer my professional services. What I do at Victoria Hospice is volunteer on a regular shift just like the other volunteers. I’ve been doing that for five years.

With regards to the Life Stories program I established, I trained 12 Hospice volunteers, nine of whom are actively engaged in the work. I designed and ran the training programs and for that I was paid my regular fee. I don’t do life story  interviews with patients unless there is no one else available.

I still continue to do the co-ordination of the program on a voluntary basis but I’m working to hand this over eventually to another volunteer. My goal is to have the Life Stories program be totally self sufficient without my involvement. From the beginning I made it clear to the Victoria Hospice administration that I wanted to see such a service succeed but that I did not want to continue to be involved in its day-to-day operation.

Are your hospice “Life Stories” volunteers paid and do the families pay for the service?

Our Life Stories volunteers, save one,  are not professional personal historians and are not paid. They do this work as part of their contribution to Victoria Hospice. We do not charge families for this service.

I should add that from the beginning we decided to keep the service as simple and as cost effective as possible. We only provide unedited audio interviews transferred to CDs. We also provide a list of resource people in the community that families can hire should they wish to do more with their interviews.

How long is a typical “Life Stories” interview session?

To be honest there isn’t really a typical session. So much depends on the condition of the patient. We don’t schedule more than an hour but sessions can be as short as 10 or 15 minutes if the patient is weak or drowsy.

What is the typical time it takes for your volunteers to complete a personal history project?

Again, there is no typical length of time. We tell patients that they can use up to 5 hours of interview time to tell their story. Some manage that and others become too ill to continue beyond an hour or two. So much depends on the overall health of  a patient  when they start the process.

Given the fact that our patients are frail, it can sometimes take 6 or more  weeks to complete 5 hours of interview.

What if the patient is resistant to talking at all?

Our Life Stories program is only offered to those Victoria Hospice patients who request it. At any time a patient may opt out of the Life Stories program if they find it not to their liking.

Next week watch for Part Two.

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Photo by Kelly Sue DeConnick

Life Stories and Palliative Care. When Time Is Running Out, What Do You Focus On?

At  Victoria Hospice we’re into the third year of a Life Stories  service for patients registered with Hospice.  This is a program that I initiated and continue to be involved with as  a trainer and a mentor for our Life Stories Volunteer Interviewers.

Among the concerns that have arisen for the Interviewers, one, in particular, has been problematic. What part of a Life Story do you focus on when it appears patients may have only a few weeks or days to live? Patients may initially indicate that they want to talk about the broad spectrum of their lives from childhood to the present. The reality, unfortunately, is that they’re not likely to have enough time to complete such an undertaking.

Here’s what I’ve suggested. The Hospice Interviewer and patient agree to start with contemplative questions first. These are questions that reveal something of who the person is, rather than the details of their life. If time permits, they can always go back to talk about childhood beginnings and the important stories from their life. So what might some of these contemplative questions be? Here are some samples.

  • What would you like to say to your loved ones?
  • What has been important in your life?
  • What are you the proudest of in your life?
  • What do you admire most about each of your children?
  • What has brought happiness to your life?
  • What’s the most valuable thing you’ve learned in life?
  • What regrets do you have?
  • How would you like to be remembered?
  • What is it that most people don’t know about you?
  • What are you grateful for?

Even if you’re not involved with palliative-care patients, you may find yourself at times interviewing someone who’s very frail and elderly. There’s no guarantee that time is on your side. In such cases you may want to give some thought as to what’s  essential to record. Focusing on more contemplative questions may be the answer.

Photo by Jill  Watson

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How to Establish a “Life Stories” Hospice Program. Part Two

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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How to Establish a “Life Stories” Hospice Program. Part One

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.

Photo by iStockphoto

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How Life Stories Can Benefit The Dying.

old lady

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.

Photo by jaded one

The Life Story Quote of The Week

Dr. Samuel Johnson

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.

Photo by Merlin Mann