Tag Archives: Palliative care

Monday’s Link Roundup.

To spice up the beginning of your week, this Monday’s Link Roundup includes  Vanity Fair. Writers Reading with  Susie Bright reading from her memoir Big Sex Little Death.  If you’re new to video editing, head over to The Basics of Video Editing. It’s a terrific resource. One of my favorites this week has to be The Book Surgeon. To say it’s incredible doesn’t do this work justice.

  • Cooking Tales: 10 Delicious Memoirs from Chefs. “The past few years, we’ve watched “foodie” culture explode into prime time, elevating many chefs to celebrity status. It’s no wonder, then, that the chef memoir has become as much of an art form as cooking itself.”
  • For Dying People, A Chance To Shape Their Legacy. “Imagine that you’ve just been told you have only a short time to live. What would you want your family and community to remember most about you? In St. Louis, a hospice program called Lumina helps patients leave statements that go beyond a simple goodbye.”
  • Vanity Fair. Writers Reading: Susie Bright Reads from Big Sex Little Death. “Susie Bright has never been one to shy away from discussing sexuality, erotica, and feminism, becoming one of America’s leading “sexperts.” In her new book, Big Sex Little Death: A Memoir (Seal Press/Audible), Bright traces her entertaining and influential political/sexual revolution—from a fearsome Irish Catholic Girl Scout to teenage radical in The Red Tide and International Socialists to co-founder of On Our Backs, the first erotic magazine created by women.” [Thanks to APH member, Catherine McCrum for alerting me to this item. ]
  • The Book Surgeon. “Using knives, tweezers and surgical tools, Brian Dettmer carves one page at a time. Nothing inside the out-of-date encyclopedias, medical journals, illustration books, or dictionaries is relocated or implanted, only removed.Dettmer manipulates the pages and spines to form the shape of his sculptures. He also folds, bends, rolls, and stacks multiple books to create completely original sculptural forms.” [Thanks to Beth LaMie of One Story at a Time for alerting me to this item.]
  • The Basics of Video Editing: The Complete Guide. “These lessons concentrate primarily on editing video in Final Cut Pro and Adobe Premiere Pro, but that doesn’t mean they won’t be helpful for other editing software. The idea behind having the lessons with both applications is to demonstrate that when you learn one editing application it’s pretty easy to learn another.”
  • Before I die I want to… “A little over a month ago, installation artist Candy Chang turned the side of an abandoned house in her New Orleans neighbourhood into a giant chalkboard where passersby could write up their personal aspirations.”

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What Everybody Ought to Know About Life Stories and Palliative Care.

I’ve been writing about the value of life stories in palliative care since 2008. I felt it was time to assemble these articles in one place for those of you who are interested in this subject. The posts are arranged chronologically from the most recent to the oldest.

Photo by David Hsu

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From the Archives: Caution: End-of-Life Interviews May Unlock Traumatic Stories.

Caution: End-of-Life Interviews May Unlock Traumatic Stories. 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 … Read More

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

This week I continue with answers to the “burning questions” that  participants asked in my workshop, Life Stories as Healing, at the Association of Personal Historians conference. You can read more questions and answers in Part One here.

What event or events in your life made you decide to do this work?

I find it’s often difficult to determine at what point an idea begins to germinate. I know that when I was thirty-two, a dear friend died in a car crash. I had seen her just the day before. She was a vibrant and compassionate individual and then she was gone. From that moment I knew that “death” was a companion on my journey.

However, it wasn’t until two decades later as a documentary filmmaker that I shot, directed, and edited a series for the National Film Board of Canada, entitled Bearing Witness. It followed three individuals who were living with a terminal illness.

As part of my research for that series I spent time at Victoria Hospice talking to nurses, counselors, doctors, and volunteers. I admired and I liked these people. I decided that once I had completed the series, I wanted to become a Victoria Hospice volunteer. In 2005 I completed my training and I’ve been working there ever since.

If you have only weeks to capture the essence of a patient’s life, do you invite the family to finish telling the story?

So far most of the patients who agree to our Life Stories interviews have only weeks to live. If we have six or seven weeks, we can usually record up to five hours of a person’s life story. If it looks as if time is running out, we may skip to topics that the patient feels are crucial.

The Life Stories interviewer always works with a patient to determine what that patient wishes to record. In some cases it’s a personal history from birth to the present. For others it might be a Legacy Letter or Ethical Will. It varies.

We haven’t  invited family members to complete a life story. They are usually too emotionally exhausted to consider such a request.

What do you do if you as the interviewer begin to cry?

As an interviewer I’m a human beings with feelings. The stories I hear have moments that are sad and I feel sad. I try to keep in mind that this is my subject’s story. It is not about me. I don’t want to start crying and have the attention shift from my subject to me.

There are times when what I hear  makes my eyes moisten and I express my sorrow at my subject’s plight. But I keep some reserve in that moment. I save the tears for later when I’m home and can receive the support I need from my partner.

Should one raise or not raise the issue of death?

I wish I could say that there’s one rule fits all but so much depends on your subject and the rapport you’ve established. Some patients want to talk about facing death and others don’t. What is important is to judge how comfortable you yourself are with death and talking about it.

I have asked some of my palliative care clients what they fear about death and in most cases they are quite open and honest with their reply. We need not shy away from talking about death but we must be sensitive to the needs of our clients.

Are men reluctant to discuss emotional issues? If they are, should the interviewer draw them out or respect their reluctance?

Male aversion to emotional issues is something of a generality and quite often true from my experience. Men prefer to talk about what they’ve done and where they’ve been than get into “messy” emotional stuff – not all men but a good number. In fairness though, to be facing your imminent death is tough and raises all kinds of feelings – anger, fear, grief, and panic. I’ve had some men and women who’ve made it clear to me that the only way they can get through the interviews is by avoiding highly charged subject matter. I respect their wishes.

When shown respect and compassion it is not uncommon for men to go from a reluctance to talking about emotional matters to being quite open about their feelings. A word of caution. As personal historians we are not  therapists. It’s not our role to make people feel better. That’s for the professional counselor. In fact we all need the names of several counselors we can refer our clients to, should the need arise.

Has pain on the part of a patient in palliative care interfered with your ability to help a person to tell their story?

For the most part pain is usually managed reasonably well  by the time we start to work with a patient. However, there are other issues that can make it hard to record a person’s story.  People can become drowsy or at times muddled from the effects of their disease and medication. There can be bouts of nausea. Overwhelming fatigue can render people speechless. In these circumstances we wait until the patient has recovered sufficiently to continue. Sadly, in some cases, there is no recovery and the patient’s story remains incomplete.

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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

A Personal List of Books on Dying.

Do you have an interest in recording the life stories of palliative care patients? If you do, I can tell you that it’s very satisfying and rewarding work. Over the years I’ve had the honor and privilege of bearing witness to those who were dying. In the process  I’ve accumulated a library of resource books that I’ve found particularly useful. This is an eclectic selection and by no means exhaustive. However, you might find the list helpful if you’re planning to work in this specialized area of personal histories.

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Tuesdays with Morrie: An Old Man, a Young Man, and Life’s Greatest Lesson. Mitch Albom. Broadway (October 8, 2002)
“This true story about the love between a spiritual mentor and his pupil has soared to the bestseller list for many reasons. For starters: it reminds us of the affection and gratitude that many of us still feel for the significant mentors of our past. It also plays out a fantasy many of us have entertained: what would it be like to look those people up again, tell them how much they meant to us, maybe even resume the mentorship?” From Amazon.com Review

Dying Well. Ira Byock. Riverhead Trade; 1 edition (March 1, 1998)
“Byock, president elect of the American Academy of Hospice and Palliative Care, is a gifted storyteller. Beginning with his own father’s terminal illness, he details without scientific cant the process of decline that awaits most of us. The case studies, which form the humanistic soul of this work, never devolve into the maudlin or saccharine. Life on the edge of the great crossing is explored in all its sadness and pathos, but Byock also makes room for wisdom, hope and even the joy of final understanding.” From Publishers Weekly

Another Morning: Voices of Truth and Hope from Mothers with Cancer. Linda Blachman. Seal Press; 1 edition (February 10, 2006)                          “Another Morning is the best oral history of the experience of cancer that I have ever seen. The women’s voices are angry, sad, and most of all, loving, as they tell stories of illness, loss, families and motherhood. Linda Blachman has written an essential documentary resource for clinicians and health researchers, and she offers those living with cancer the companionship of generously shared experiences.” Review by Arthur W. Frank, MD, Author, The Renewal of Generosity and The Wounded Storyteller

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. Maggie Callanan and Patricia Kelley. Bantam (February 3, 1997)
“Impressive insights into the experience of dying, offered by two hospice nurses with a gift for listening. The “final gifts” of the title are the comfort and enlightenment offered by the dying to those attending them, and in return, the peace and reassurance offered to the dying by those who hear their needs.” From Kirkus Reviews

The Year of Magical Thinking. Joan Didion. Vintage (February 13, 2007)
“Didion’s husband, the writer John Gregory Dunne, died of a heart attack, just after they had returned from the hospital where their only child, Quintana, was lying in a coma. This book is a memoir of Dunne’s death, Quintana’s illness, and Didion’s efforts to make sense of a time when nothing made sense.” From The New Yorker

Mortally Wounded: Stories of Soul Pain, Death, and Healing. Michael Kearney. Spring Journal, Inc (December 1, 2007)
“Through somber stories, a hospice physician shares his experiences of working with people near death, revealing how the dying process can be a time of personal growth. Kearney, medical director of palliative care at Our Lady’s Hospice in Dublin, Ireland, argues that the terror of death stems from a split between the rational and intuitive minds. When an individual becomes alienated from his deepest and most fundamental aspect, he says, the result is soul pain.” From Kirkus Reviews

What Dying People Want: Practical Wisdom For The End Of Life. David Kuhl. PublicAffairs; 1 edition (July 8, 2003)
“Drawing from case studies that he conducted as part of the Soros Foundation’s “Death in America” project, Kuhl provides a balanced perspective on caring for the terminally ill. An M.D. himself, he acknowledges that doctors sometimes have poor interpersonal skills, and he offers helpful insight into why this is so and how patients can foster better communication. Besides discussing the physician’s account of the clinical aspects of the dying process, Kuhl sensitively examines the harder-to-define psychological and spiritual issues.” From Library Journal

A Year to Live: How to Live This Year as If It Were Your Last. Stephen Levine. Three Rivers Press; Bell Tower Trade Paper Edition. 11th Pri edition (April 14, 1998) “As a counselor for the terminally ill and author of many works on spirituality and dying, Levine has come to believe that preparing for or “practicing” death reminds one of the beauty of life. In this production of his book (Crown, 1997), Levine himself relates his experiences and emotions in his yearlong experiment in “conscious living.” From Library Journal

Facing Death and Finding Hope: A Guide To The Emotional and Spiritual Care Of The Dying . Christine Longaker. Main Street Books (May 18, 1998)
“Christine Longaker’s experience with death and care of the dying began in 1976 when her husband was diagnosed with acute leukemia at the age of 24. Since his death, she has devoted her life to ease the suffering of those facing death. In a clear and compassionate tone, she identifies the typical fears and struggles experienced by the dying and their families. The core of the book is presented in “Four Tasks of Living and Dying,” using the Tibetan Buddhist perspective on death to provide a new framework of meaning that can be applied to every type of caregiving setting. These spiritual principles are universal, enabling readers to find resonance within their own religious traditions.”  From the Publisher

Dying: A Book of Comfort. Pat McNees. Grand Central Publishing; 1 edition (August 1, 1998)
“This remarkable collection, coming from personal experience and wide reading, will help many find the potential of growth through loss.” Review by Dame Cicely Saunders, founder of the hospice movement

How We Die: Reflections of Life’s Final Chapter. Sherwin B. Nuland. Vintage; 1 edition (January 15, 1995)
“Drawing upon his own broad experience and the characteristics of the six most common death-causing diseases, Nuland examines what death means to the doctor, patient, nurse, administrator, and family. Thought provoking and humane, his is not the usual syrup-and-generality approach to this well-worn topic.” From Booklist

The Good Death: The New American Search to Reshape the End of Life. Marilyn Webb. Bantam; Bantam Trade Ed edition (February 2, 1999) “Webb’s message is clear: The modern way of dying involves excessive emphasis on exotic technology and too little reliance on palliative care. The book is richly textured with personal, international, and cross-cultural suggestions for remedying the imbalance.” From Library Journal

Grace and Grit: Spirituality and Healing in the Life and Death of Treya Killam Wilber. Ken Wilber. Shambhala; 2 edition (February 6, 2001)
“A tremendously moving love story. Wilber presents cancer as a healing crisis, an occasion for self-confrontation and growth.” From Publishers Weekly

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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, 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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I’m Celebrating!

This week marks an important anniversary for me. Drum roll, please!

Two years ago I launched this blog and wrote my first post. Since then I’ve written  310 articles and 41,365 viewers have visited the site. A big thank you to all of you who’ve dropped by. And a special thanks to those who’ve taken the time to leave a comment or two.

From the collection of articles, I’ve selected 15 of my favorites. These are not necessarily the ones that received the most attention from readers but they are the posts that I really like and I think deserve an encore. For those of you who haven’t seen these posts, I invite you to stop awhile and have a read.

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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.

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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.

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