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Life continually challenges us with the unexpected. And only a fool would attempt to prepare for the unforeseen. It does help though to go into uncharted territory with our eyes open to potential risks.
Interviewing terminally ill people for their life stories is satisfying, worthwhile, and often moving work. Though it does come with precautions. I’ve previously written about some of these in Interviews May Unlock Traumatic Stories. and 7 Essential Questions to Consider.
Now imagine yourself in the following situation.
You’re interviewing an 80-year-old woman, Rose, who lives with her daughter, Sandra. The daughter provides much of the caregiving. Rose suffers from a number of heart-related problems.
This is your third visit. The daughter tells you that she’ll be out doing errands while you spend the next hour interviewing her mother. Sandra assures you she’ll be back within the hour. It’s just you and Rose alone in the house.
About halfway through the interview Rose develops severe pains in her chest. She asks you to hurry and get her nitro pills in the kitchen. You find a tray with numerous medications but nothing labeled nitro.
Back in the living room you explain this to Rose. She suggests you call her daughter whose cell phone number is on a message board in the kitchen. But when you try to find the number, it’s nowhere to be found.
Rose is becoming increasingly agitated and calls out to bring the tray of medication to her in the living room. A number of questions race through your head.
- What if she picks the wrong medication with calamitous results?
- If something goes wrong, what should I do?
- I’ll have to leave soon for an urgent appointment and Sandra hasn’t returned home. Should I leave anyway?
What would you do?
As a general rule, it is vitally important that as a personal historian working with a terminally ill person, you don’t begin to undertake caregiving tasks. You weren’t hired for this and indeed may put yourself and your client at risk if you step into such a role.
Having said that, you could find yourself in a situation similar to the one described with Rose. And with no one available to help, you may have to step in.
Some suggestions.
There are a range of possible responses, none totally satisfactory. But here are some suggestions:
1. If Rose is registered with a local Hospice, there may be a number you can call for just such a crisis. Someone there would have a list of her medications and be able to help you. If she isn’t registered with Hospice, then go to step 2.
2. Assuming Rose is clear mentally, bring the tray and ask her to point to the nitro pills. Read out the name of the drug and ask if these are indeed the nitro pills. If she confirms they are, then allow her to select the bottle and take the prescribed dose. Don’t select the bottle for her.
3. Stay by Rose’s side and monitor her progress. If she shows signs of recovery, you can breathe easy. If her condition worsens, call 911.
4. Assuming all is well, you still have an urgent appointment to keep. Sandra, Rose’s daughter, hasn’t returned. And you feel uncomfortable leaving Rose on her own. Here’s what you might do:
- Ask Rose if there is a neighbor who could come over and stay until Sandra returns. If there is, contact the neighbor and have that person come over.
- If there’s no one who can come over, I’d opt to stay until Sandra returns. As urgent as your appointment may be, it is not worth risking someone’s safety. Call and re-schedule your appointment.
A final word.
One way to avoid the kind of predicament I’ve described is to make certain that you’re never alone with a person whose health is severely compromised. Don’t allow a family caregiver to use you as a means to get out of the house. Pleasantly and firmly point out that your arrangement with your client doesn’t involve caregiving responsibilities.
I’d appreciate your responses to this scenario. Please post your thoughts in the comment box below. I promise to respond to each one.
Photo by jan van schijndel
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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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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
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I know. I know. This isn’t news to you, right? But I think deep down we personal historians secretly believe that if we find the right combination of price, promotion, and product, people won’t be able to resist us. Clients will be beating down our door. Wrong! Even if you give your services away for free, you still won’t get many takers. Let me explain. I initiated and have coordinated a life stories program over the past two years at Victoria … Read More
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In the past twelve months these are the posts that have ranked as the most popular with readers. If you’ve missed some of these, now’s your chance to catch up over the holidays. Enjoy!
- How Much Should You Pay A Personal Historian?
- Your Photo Restoration Resource List.
- 15 Great Memoirs Written by Women.
- 5 Print-On-Demand Sites You’ll Want to Consider.
- #1 Secret to Getting More Clients.
- 5 Top Sites for Free Online Videography Training.
- How to Interview Someone Who Is Terminally Ill: Part One.
- How to Salvage a Damaged Audio Cassette.
- Warning: Using Copyright Music Without Permission Is Illegal.
- How to Make Your Life Story Workshop Memorable.
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A reader recently asked, “Two people have consented to [an ethical will] but I think video taping them would be more personal for the receiving family. Can you see some possible landmines?” This was my reply.
There are several things to be cautious of when undertaking a video ethical will.
- First ensure that your clients prefer a video rather than an audio or printed ethical will. Some people suffering from a terminal illness don’t want their families to have a lasting image of their decline.
- Will you have your clients speak directly to the camera or to you off screen? While speaking directly to camera can be effective for an intimate presentation like this, it can be intimidating for someone not used to facing a camera.
- Preparing an ethical will requires a good deal of reflection. Your clients will need time – perhaps a week or more to fashion responses to the questions posed by an ethical will. I would suggest that, if at all possible, have them work on writing down their thoughts before actually videotaping their responses.
- Avoid having your clients rehearse their responses. This sounds like a contradiction of my previous point but it’s not. You want people to have given sufficient thought to their ethical will but you don’t want them to become fretful about getting it “right”. This will end up producing results that are stiff and not natural.
- Be aware that you may unlock some painful memories. How comfortable are you with sadness, tears, and anguish? Do you have a counselor you can recommend to your client should things become more than you can handle?
- Above all don’t rush the process. It takes time.
If you’re interested in learning more about ethical wills, check out my previous articles:
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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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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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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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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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