Tag Archives: End of life

Monday’s Link Roundup.

Happy Labor Day! I’m back from my “staycation” (somewhat) rested and ready to bring you more wonderful links. This Monday I highly recommend My father still laughed in the face of death. And for those of you interested in graphic design be sure to watch the trailer for Typeface.

Smalltopia: A Practical Guide to Working for Yourself. “…full of tips, tools, and strategies to help you create personal freedom through a very small business. Smalltopia is broken up into three sections: Philosophy, Business Essentials, and Case Studies. The ebook tells my personal story of escaping the rat race and the lessons I learned along the way.”

The Power of Storytelling: Creating a New Future for American Muslims. “In seventh-century Arabia, the storyteller was valued more than the swordsman. The audience sat on the floor surrounding the gifted orator as he captivated the eager listeners with beautiful poetry narrating their history. In the twenty-first century, the art form may have evolved to include motion pictures, TV shows, theater productions, novels, and stand-up comedy, but they all serve the same function: storytelling.”[Thanks to APH member Marcy Davis for alerting me to this item.]

My father still laughed in the face of death. “At the hospice he and his favourite palliative-care nurse would fall into fits of contagious laughter. It was his drug of choice.”

Home Life: A Journey Through Rooms and Recollections. “This is a memoir, but don’t be put off. Fox has organized her memories around a witty and beguiling conceit: rooms, homes, and spaces she has stayed in or, in the case of the Bordeaux room at the Metropolitan Museum, been enchanted by.” ~ from Booklist [Thanks to cj madigan of Shoebox Stories for alerting me to this item.]

Make the Most of Your Memory: 10 Tips for Writing About Your LIfe. “Because memoirs are categorized as nonfiction, you intend to “tell the truth, the whole truth, and nothing but the truth,” right? But how can you be sure your words are true (and avoid controversy)? How can you tell the whole truth of your richly detailed life, when you can’t even remember what you had for breakfast yesterday? And if you aim to tell “nothing but the truth,” does that mean you can’t invent a little when certain facts escape you but are vital to the depth and/or coherence of the story?”

Typeface Official Trailer. “In a time when people can carry computers in their pockets and watch TV while walking down the street, Typeface dares to explore the twilight of an analog craft that is freshly inspiring artists in a digital age. The Hamilton Wood Type Museum in Two Rivers, WI personifies cultural preservation, rural re-birth and the lineage of American graphic design.” [Thanks to Marcy Davis for alerting me to this item.]

We Are All Cousins. “People are connected in surprising ways, says Elizabeth Shown Mills, CG, CGL, FASG, FNGS, FUGA — arguably the most influential genealogist of our time. Learn from the best with the NGS Online Video Series, produced by award-winning filmmakers Kate Geis and Allen Moore, featuring today’s most distinguished genealogy experts.”

From the Archives: Life Stories at the End of Life.

More of The Best of Monday’s Link Roundup.

The last week of my “staycation” and time to dip into some of the best of my previous Monday’s Links.

  • Doing oral history: a practical guide by Donald A. Ritchie. A Google Book. ”Doing Oral History has become one of the premier resources in oral history. It explores all aspects of the field, from starting an oral history project, including funding, staffing, and equipment to conducting interviews; publishing; videotaping; preserving materials; teaching oral history; and using oral history in museums and on the radio. In this second edition, the author has incorporated new trends and scholarship, updated and expanded the bibliography and appendices, and added a new focus on digital technology and the Internet. Appendices include sample legal release forms and information on oral history organizations.”
  • New! Browse the Complete Popular Science Archive.“We’ve partnered with Google to offer our entire 137-year archive for free browsing. Each issue appears just as it did at its original time of publication, complete with period advertisements.”
  • TeleKast Is a Snazzy Open Source Telepromter App.“Windows/Linux: Whether you want to produce an amateur news segment, deliver a teleprompted speech, or just record a video message without a lot of “ums”, free, open-source application TeleKast is a solid desktop teleprompter worth checking out.”
  • The Beneficial Effects of Life Story and Legacy Activities by Pat McNees. [PDF]from the Journal of Geriatric Care Management. “We know, and research increasingly tells us, that life story writing and reminiscence can improve the mood and quality of life for adults with more years behind than ahead of them.”
  • Top 100 Blogs to Improve Your Writing in 2010. “Here is a list of 100 blogs that will help you improve your writing by providing inspiration, motivation, creativity and new techniques from experts, freelancers, and editors from every genre.”
  • This I Believe. “…an international project engaging people in writing and sharing essays describing the core values that guide their daily lives. Over 70,000 of these essays, written by people from all walks of life, are archived here on our website, heard on public radio, chronicled through our books and television programming, and featured in weekly podcasts. The project is based on the popular 1950s radio series of the same name hosted by Edward R. Murrow.”
  • Fair Use & Copyright. “Fair use is the right, in some circumstances, to quote copyrighted material without asking permission or paying for it. Fair use enables the creation of new culture, and keeps current copyright holders from being private censors. With the Washington College of Law, the Center for Social Media creates tools for creators, teachers, and researchers to better use their fair use rights.”

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

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

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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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.

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7 Essential Questions to Consider Before Offering a Personal History Service to the Terminally Ill.

**Don’t forget to vote on my poll: How long have you been a personal historian? Click here to vote.**

I know some of you are interested in the possibility of providing personal history services to the terminally ill. I’ve been helping those at the end-of-life record their personal histories  as well as volunteering at Victoria Hospice for the past five years.  I find it tremendously satisfying work but it’s not for everyone. If you’re seriously contemplating working with the dying, here are seven questions to ponder.

  • How flexible are you with your schedule?

If you’re someone who gets easily frustrated and cranky when your plans go awry, then this may not be the work for you. People who are ill can plan to meet you on a certain day but at the last moment cancel because they’re not feeling up to it. Or they simply forgot because medications can sometimes make people a little muddled. At other times  family or friends drop by unexpectedly and you’re put on hold. You  have to accommodate ill people’s schedules, not yours.

  • How calm are you?

Terminally ill people are already under a lot of stress. They don’t need you to add to it. If you’re a high energy Type A personality, easily flustered, who finds it hard to sit still, then this isn’t the work for you. When you’re with people who are dying, you need to be able to set aside your own problems and mental shopping lists and be focused, present, and relaxed.

  • How patient are you?

This is a big one. There’s always something that can go wrong. If you’re an impatient person, you’ll not last long at this work. Circumstances can alter dramatically. As I mentioned, schedules can change abruptly. Or you’re told on arrival that everything recorded on the previous visit must be deleted because people fear it may be offensive to their family. Or you arrive at the same time that “home care” arrives to start  vacuuming the house. Sometimes you find that you had scheduled an hour long interview but after fifteen minutes people are too tired to continue. This is after you’ve driven thirty minutes or more to get to the patient’s home.

  • How comfortable are you around sadness?

Being with people who are near life’s end is inherently sad. Your interviews will naturally unlock tears in people as they’re reminded of their shortness of time.  And it’s sad when you’ve come to know someone well and that person dies. If you’re by nature a melancholy person or one who avoids emotionally challenging situations, this is not the work for you.

  • How well do you deal with disappointment?

If you’re someone who needs concrete accomplishments and goals you might be disappointed by this work. Sometimes a life story is abruptly terminated because the person you’re working with becomes too ill to continue. You’re left with a half completed story with no chance of finishing it. Or stories you know would be invaluable to the family are “off limits” because people don’t want to talk about anything that might make them “tear up”.

  • How well are you at establishing boundaries?

As you spend time with terminally ill people, your role as a professional personal historian may become compromised.  Let me be clear.  Your work doesn’t involve running errands, counseling, being friends, or providing help with physical care.

You must be clear about your boundaries. It may be appropriate occasionally to pick up some item on your way over for an interview but you’re not a delivery service. You’re definitely not a therapist and you shouldn’t be offering anything that remotely appears to be counseling.  Spending time talking to people about their lives is by its very nature  intimate work. Occasionally you may  sense a budding friendship. This is a tough one to handle. Think carefully what a friendship will involve. Are you able to spend the time and emotional energy that such a relationship will entail? My advice is to move cautiously on this one. As far as any kind of physical care, such as helping with a transfer or feeding, don’t do it! You are not a health care professional and you could cause your subject serious injury.

  • How do you handle stress?

Providing personal history services for those at end-of-life is stressful. Whether it’s mediation, a hobby, long walks, or a network of friends, you’ll need to do something to manage your stress. If you haven’t ways of coping with stress, then you’ll become burned out by this work.

Photo © Michael Spring | Dreamstime.com

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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 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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When Small Can Be Profound.

Not long ago I was asked to audio record some final words from a young mother who was dying from cancer.  I’ll call her Sonia to protect the family’s privacy. She was in her early thirties and she wanted to leave something for her only child, a five-year-old boy.

The day I met her, I asked what she would like to say to her little boy. It was not easy. The  anguish of her never seeing her son again made it hard for Sonia to say what was in her heart. But with patience and time we were able to record a few minutes  of her tender wishes and hopes for her boy.

I realized that we were not likely to get more. But a thought struck me. “What about bedtime stories?” I asked Sonia if she read to her boy and if he had some favorite stories. She smiled and nodded. “How would you like to select a couple and we could record you reading them?” She agreed and on my next visit, although she was weak, she softly read the stories that her son had enjoyed. That was the last thing we recorded. Not long after Sonia died.

In all we had recorded little more than half an hour. Not much really. But as I thought about her son and the wonderful gift his mother had left, I was deeply moved. It wasn’t a question of the amount we had recorded. It was that Sonia’s little boy would still be able to hear her comforting voice. And one day, as a man, he would be able to listen to those bedside stories and remember his mother,  a mother who died much too soon. Small can indeed be profound.

Photo by Gaël

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