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End-of-life decision making
Enjoying the golden years
Including suicide and assisted suicide
Plus memorials and requiems
Narrative Medicine (or medical narrative) and illness memoir |
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“We are such spendthrifts with our lives. The trick of living is to slip on and off the planet with the least fuss you can muster. I’m not running for sainthood. I just happen to think that in life we need to be a little like the farmer, who puts back into the soil what he takes out.”
~ Paul Newman, as reported in his New York Times obituary
What is an ethical will or legacy letter?
Also called a legacy letter, a life letter, a love will, a testament, and an “ending note,” it is a way to
• Document (or record) and share your values, beliefs, life's lessons, hopes for survivors.
• Express appreciation of (and maybe to) those who significantly shaped or affected your life or brought you special joy, pleasure, happy memories, etc.
• Express love, regrets, apologies, forgiveness (maybe seeking reconciliation or resolution of unfinished business)
• Share your spiritual autobiography—how you arrived at what you believe, and how your life reflects those beliefs
• Tell the story of your life or key parts of it —who you are, how you lived, who you loved, what you want people to know or understand about you, trying as much as possible to tell your life in your own, recognizable voice
• Collect and pass on your family history, whether of the family members who came before you, your own generation, the children who came after you, or all of these.
• Articulate your wishes about what happens to you as and after you die.
• Articulate your hopes and wishes for what happens to your survivors after you die (and if that includes “I hope you suffer” or equivalent, get those feelings off your chest, write them down, and then burn them).
• Bequeath values, not valuables.
An ethical will is NOT the same thing as a living will, a letter of instructions, an advance directive, or a last will and testament. ( Here is a list of the documents you need to protect your own and your survivors' rights.) It is not a legally binding document. But is is something every estate lawyer, legal adviser, life coach, and financial planner should know about and suggest that their clients create. It is an important part of end-of-life planning.
"Never doubt that you can change history. You already have."
~ Marge Piercy, novelist
A fuller explanation of ethical wills (or legacy letters)
The Aha Moment (Mutual of Omaha)
Anatomical Gifts (Empowering Caregivers)
Annual Legacy Writing Review, Rachael Freed (Huffington Post 10-3-11). A review of "Legacy Tips and Tools," Freed's e-letter on legacy writing, including "principles of practice" (how to). Also by Rachael Freed:
• Legacy Writing: A Spiritual Practice (posted on Andrew Weil's blog)
• The Legacy of Our Stuff (6-30-11 -- this is such a sensible project -- do it with YOUR stuff!)
• How to Apologize in 6 Steps ) (Huffpost 5-30-11)
• Legacy Writing: A Spiritual Practice (Huffpost 12-30-11)
• More of Freed's Huffington Post blog entries
The beauty of a narrow doorway (Susan Turnbull on the benefits of finding a narrow entry point to start an ethical will or longer personal history, in answer to the question, Where do I begin? Be sure to click on and read the beautiful one-paragraph ethical will she provides as an example.
Before I Die. Installation artist Candy Chang turned the side of an abandoned house in her New Orleans neighborhood into a giant chalkboard where passersby could write up their personal aspirations. Her work is full of messages.
Before Passing Along Valuables, Passing Along Values (Robert Powell, Wall Street Journal, 12-7-12). Why legacies and life lessons are an increasingly important part of estate planning
Bequeathing Smart Strategies: How to write an ethical will (Lauren Foster interviews Susan Trumbull, for Barron's 9-18-10). You leave your family more than an estate. An ethical will, an extralegal, nonbinding document, is meant to communicate values and family feelings.
David Foster Wallace, in His Own Words (the commencement address he gave to the graduates of Kenyon College in 2005, posted on MoreIntelligentLife.com)
Dignity Therapy. For the Dying, A Chance to Rewrite Life (Alix Spiegel, Morning Edition, NPR 9-12-11). Listen or read transcript.
Engage with Grace and the One Slide Project. To help ensure that all of us--and the people we care for--can end our lives in the same purposeful way we lived them. • Watch the Engage with Grace Story (Video, Za's Story) • Download the One Slide (PDF)
Farrah Fawcett's Long Goodbye (Jim Rutenberg, NY Times, 5-27-11). Dying of cancer, she authorized a documentary of her final days. "Ms. Fawcett had intended the film to address shortcomings she saw in American cancer treatment and to present it in art-house style....After [Ryan] O’Neal and NBC gained full control of the documentary, the film took on the feel of network celebrity fodder — at once more glossy and more morbid....Many scenes addressing the American medical system were scrapped or truncated." Her final story became the object of a lengthy battle. A lesson in how not to do something--but I'm not sure what the lesson is.
Food as legacy: What the Last Meal Taught Him (Kim Severson, NY Times, on Thomas Keller's last meal for his father, 10-27-09)
For Dying People, A Chance To Shape Their Legacy (Julie Bierach, Weekend Edition, NPR, 4-9-11). 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. At the website of BJC Palliative Home Care and Hospice you can download helpful materials, including Courtney Strain's What you can do when a friend (like me) faces the end of life.
The Gift of an Ordinary Day by Katrina Kenison (reading aloud). On appreciating your children AS they are growing up. Get out a hanky for this one.
How to Pass Along Values and Life Lessons to Heirs (Robert Powell, Wall Street Journal, 12-7-12)
How to live to be 100 and over (video of TED talk by Dan Buettner)
The Lecture of My Life. New York's 92 Street Y is inaugurating this new series of leading figures reflecting on their life experiences, with Governor Mario Cuomo delivering the first lecture, in January 2010. Great idea for any community!
Legacy Letter Project
Lights, Camera...Last Words (Kristen McNamara, WSJ, 12-3-09, on video offering chance for last words, and heading off legal disputes)
Regina Brett's 45 life lessons and 5 to grow on (Regina Brett, The Plain Dealer, 4-3-08). Worth reading. She wrote 45 lessons when she was 45, and added 5 more when she turned 50. Examples: "Life isn't fair, but it's still good." "You don't have to win every argument. Agree to disagree." "Overprepare, then go with the flow."
The Service of Love (Alli Joseph's This I Believe essay, about capturing family stories)
Ten-year-old with Flint roots wins military child of the year award. The father of Willie Banks III died when Willie was five, but wrote his son six letters to guide him. "Willie III receives one letter every five years. They include life instructions, lessons and encouragement." ~ Beata Mostafavi,Flint Journal, 3-19-10
There's More to Life Than Being Happy (Emily Esfahani Smith, The Atlantic, 1-9-13). An excellent essay on what Victor Frankl (author of Man's Search for Meaning) taught us. "It is the very pursuit of happiness that thwarts happiness." "Nearly a quarter of Americans do not have a strong sense of what makes their lives meaningful."
Top five regrets of the dying. A nurse has recorded the most common regrets of the dying, and among the top ones is 'I wish I hadn't worked so hard'. What would your biggest regret be if this was your last day of life? (Susie Steiner, The Guardian, UK 2-1-12)
12 top-rated family tree makers (genealogy software described by Dan Curtis) -- record those family relationships!
"Obviously, none of us live forever," said Wade Matthews, 76, a retired diplomat, avid birder and head of the Sarasota chapter of Americans United for Separation of Church and State. "We'd all like to see a little bit of the things we think are worthwhile passed on, partly for the historical record and partly for the hope that some of these ideas might be adopted by other people."
~ quoteed in the story Capturing seniors' stories while she still can, by David Ball (Herald Tribune, 2-10-2010--check out the box, "Words to the Wise") [Go Top]
BOOKS TO GUIDE YOU AS YOU CREATE ETHICAL WILLS OR LEGACY MESSAGES:
Adams, Gemini. Your Legacy of Love ("Realize the Gift in Goodbye." If you leave only a letter, leave something. Don't put off facing the reality of death.)
• Ashe, Arthur and Arnold Rampersad. Days of Grace: A Memoir (the last chapter, Dear Camera, is a moving legacy letter to his daughter)
• Baines, Barry. Ethical Wills: Putting Your Values on Paper. Very basic. On his website you’ll find many fine examples of ethical wills.
• Blachman, Linda. Another Morning: Voices of Truth and Hope from Mothers with Cancer
• Byock, Ira. The Four Things That Matter Most: A Book About Living
• Callanan, Maggie and Patricia Kelley. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying (two hospice nurses provide "a gentle way to think about the unthinkable" and "how to recognize, understand, and respond to a dying person’s messages")
• Cebuhar, Jo Kline. So Grows the Tree: Creating an Ethical Will (available on Kindle, too).
• Edelman, Marian Wright. The Measure of Our Success: A Letter to My Children and Yours (on family legacy, the legacy of service, and 25 lessons of life)
• Frankl, Viktor E. Man's search for meaning(originally titled From Death Camp to Existentialism). A psychiatrist's experience in the death camps of Auschwitz helps him humanize psychiatry. May help you think through what's important in your life.
• Freed, Rachael. Women's Lives, Women's Legacies: Passing Your Beliefs & Blessings to Future Generations. Excellent for exploring aspects of being a woman. Also available: The Heartmates Journal: A Companion for Partners of People with Serious IllnessThe Women's Legacies Workbook for the Busy Woman (or purchase and download it online.
• Geary, Marilyn L. and Jacqueline Janssen. LeaveLight: A Motivational Guide to Holistic End-of-Life Planning
• Gluckel. The Memoirs of Gluckel of Hameln (diary of a 44-year-old German Jewish widow, mother of fourteen, begun in 1690). An early ethical will by a woman.
• Gottlieb, Daniel. Letters to Sam: A Grandfather's Lessons on Love, Loss, and the Gifts of Life (a special-needs grandfather provides insights for his special-needs grandson)
• McCord, Bill. The Gift of You: How to Tell Your Loved Ones Who You Really Are
• Nerburn, Kent. Letters to My Son: A Father's Wisdom on Manhood, Life, and Love , a book friends have raved about and re-read; also Simple Truths: Clear and Gentle Guidance on the Big Issues in Life
• Padgett, Ann. What now? An essay based on Padgett's commencement address at Sarah Lawrence College, What Now? tells readers about "the swift passage of time, the weird twists and turns that lead us down unanticipated paths, and the ingenuousness of youth."
• Phifer, Nan. Memoirs of the Soul: Writing Your Spiritual Autobiography
• Pillemere, Karl, ed. 30 Lessons for Living: Tried and True Advice from the Wisest Americans, advice and hard-won wisdom selected by Pillemere (seen on this video) and the Legacy Project at Cornell.
• Poitier, Sidney. Life Beyond Measure: Letters to My Great-Granddaughter. (See also Poitier's The Measure of a Man: A Spiritual Autobiography)
• Riemer, Rabbi Jack and Nathaniel Stampfer. So That Your Values Will Live On: Ethical Wills and How to Prepare Them. Many examples, with an emphasis on Jewish ethical wills.
• Strassfield, Sharon. Everything I Know: Basic Life Rules From A Jewish Mother (a model of a letter to a daughter as she leaves for college)
• Turnbull, Susan. The Wealth of Your Life; A Step-by-Step Guide for Creating Your Ethical Will and Across Generations: A 5-Step Guide for Creating an Expression of Donor Intent
"So much happens to us all over the years. So much has happened within us and through us. We are to take time to remember what we can about it and what we dare. That's what taking the time to enter the room (called "Remember") means, I think. It means taking time to remember on purpose. It means not picking up a book for once or turning on the radio, but letting the mind journey gravely, deliberately, back through the years that have gone by but are not gone. It means a deeper, slower kind of remembering; it means remembering as a searching and finding. The room is there for all of us to enter if we choose."
~~ Frederick Buechner , “A Room Called Remember” from the book Secrets in the Dark: A Life in Sermons
The Violinist in the Metro
If you are collecting other people's wisdom as your legacy, consider including the following story from the Washington Post:
Pearls Before Breakfast”, by Gene Weingarten (April 8, 2007). Here's one paragraph from Weingarten's story, one lesson from which is "practice mindfulness":
"There was no ethnic or demographic pattern to distinguish the people who stayed to watch Bell, or the ones who gave money, from that vast majority who hurried on past, unheeding. Whites, blacks and Asians, young and old, men and women, were represented in all three groups. But the behavior of one demographic remained absolutely consistent. Every single time a child walked past, he or she tried to stop and watch. And every single time, a parent scooted the kid away."
Not Quite What I Was Planning, NPR's delightful slideshow of images and text from the book Not Quite What I Was Planning:Six-Word Memoirs by Writers Famous and Obscure, edited by Rachel Fershleisher and Larry Smith, based on the six-word memoirs of the storytelling magazine Smith.
If you had only one hour to live and the only way you could communicate with survivors was to leave them a letter, what would you write — and to whom would you write it?
Events like Katrina remind us of the fragility of life.The revival of an old Jewish tradition given new momentum by the events of September 11, the ethical will is not legally binding; it is a message from the heart. I don't like the phrase myself (it sounds both preachy and legalistic), and welcome such alternatives as "ending note," "legacy letter," "love will," "testament", "lifeletter," or "farewell with love and instructions." Such a letter can be both a vehicle for self-exploration and a gift to yourself and loved ones. You may share it while you are alive, or leave it to be read when you are gone. It can be as short as one page or as long as a full memoir or family history.
Such a letter can also mean worlds to survivors. A widower writing in Newsweek says, "No matter how close my wife and I were, no matter how much we loved each other, and no matter how many heartwarming memories I have of our togetherness, I don't have any tangible record of her heart speaking to mine. And how I wish I did....When Marion was alive, I never gave it a thought. Now I wish I had her words to read and reread....I have pictures — even a couple of collections of slides on videocassette. What I don't have, in black or blue on white, are her thoughts"
Such legacy letters are often written at transition points such as marriage, childbirth, a major illness, or simply arriving at that point when you see more life behind you than in front of you. Candidly assessing your life experiences and values, trying to make sense of the world or your life, reminding your loved ones and friends how you lived your life, and figuring out where your values came from and which values and life lessons you want to pass on to the next generation can energize you and change the way you see your life.
Your last will and testament disposes of all your earthly goods — who gets which valuables, what you want your survivors to have. Your living will spells out the kind of medical care you want when you can no longer care for yourself (should they shut off the ventilator when all hope seems lost, or should they do everything possible to save you?). Your letter of intent (see Kristie Miller's, on this website) spells out the things that would make you happy should you experience a disabling health event, so that you can't care for yourself and might not be able to express yourself.
Your life letter or ethical will — let's come up with a better term for this heartfelt message to your survivors — tells your survivors what you want them to know. It conveys expressions of love, blessings,personal and family stories you treasure; it articulates what you value and want to be remembered for, what you hope your survivors learn from you or want your children and grandchildren never to forget. This message can be expressed in a one-page letter, a collection of messages, as a videotape of you expressing yourself — even as a newspaper article. It could involve writing memoirs or an autobiography (see link below to an Atlanta Journal story). The Financial Planning Association reports from survey results that these "non-financial leave-behinds" are ten times more important to most people than their parents' financial legacy.
Here's an example: write a letter telling your son, daughter, partner, or sibling all the things you love about them, and what you especially remember of your life together. If you're planning to join your life with another's, or planning to have a child together, you might commit to paper the things that matter to you — your ideals, hopes, fears, and expectations. If you've just had a child, you might want to voice your feelings about the occasion and your hopes for the child (see Michael Kilian's "message of hope for a newborn," posted on this website, published when his son was born). You might take a series of photos from the family album (do it before they're carried off by a hurricane — get a CD made of the best and send copies to the family) and tell stories about what was happening at the time. If your professional work has been especially meaningful, and you have shelves or drawers of documents worth preserving, you might want to spell out to your heirs what you want them to do to preserve your professional legacy. If you want your heirs to support certain causes, here is a chance to explain which ones, and why — and why you led your life the way you did. There are many approaches to writing (speaking, taping) this kind of legacy.
[Go Top]
Pat's ethical wills workshop.
You're in good health — why be so morbid? Participants in Pat's workshop on the ethical will (or "personal legacy letter") at the Writer's Center in Bethesda, MD, were energized by the experience of facing their possible demise (their "sell-by date"), and in the final (surprisingly upbeat) session found it a great relief to write what they wanted on their tombstone and to frankly discuss their wishes for their funeral (or cremation, or body donated to science!). This definitely nontraditional writing workshop provides a safe (neutral) place to explore important elements of one's life and to write messages that are often, by turns, tender, amusing, intensely personal, and sure to be valued by those who receive them. Pat provides a sequence of exercises to help you capture the memories, hopes, wishes, apologies, explanations, and other thoughts important for you to convey to your survivors. You might choose to tell stories or to write about what you feel is important in life. You might put into perspective a dramatic emotional episode in your life with your child (partner, friend). You might explain why you are leaving money to save the coral reefs (or whatever). You might choose to write about important life choices, experiences, achievements, mistakes, family traditions, important influences, beliefs, convictions, hopes, or life lessons (often wrapped in life stories). You might decide to tell the stories behind favorite possessions you will pass along to others; or to explain why you are providing for legacies to charitable or other organizations; or to explain why you believe what you believe; or to articulate your preferences for decisions about your final care, death, dying, and remembrance. And you might decide that you want to leave your ethical will both as a print and video or audio document, so your survivors can hear what you have to say in your own voice.
[Go Top]
Psychiatry as a performance art
"Writing about [events in my life] has been a way of processing them. Not only tragedies like the deaths of my sons, but other things like learning of my adoption as an adult and my search for my birthmother. These are life-altering experiences and writing about something is a good way to figure out what to make of it.
"Patients, of course, are an endless source of inspiration and stories. Psychiatry is a performance art. We talk with people; they tell us their secrets and their pain. They benefit from the conversations or not. But it’s all words in the air; our case notes are sealed and unless we write something down, the experiences are lost except to our memories. But we’re changed by these stories just as our patients are and the truths they lead us to are worth preserving. Writing down what we have learned also constitutes a kind of “ethical will,” something to convey to succeeding generations in the same way that we distribute our property. I think that we have some obligation before we die to enunciate whatever we think we’ve learned about life. So that was also a motivation to write these books, because I thought that whether anybody buys them or not, my children and their children will have this gift from me."
~ Gordon Livingston, MD, author of Too Soon Old, Too Late Smart: Thirty True Things You Need to Know Now and And Never Stop Dancing, interviewed by Bruce Hershfield for Maryland Psychiatrist
For attractive lips, speak words of kindness.
For lovely eyes, seek out the good in people.
For a slim figure, share your food with the hungry.
For beautiful hair, let a child run his or her fingers through it once a day.
For poise, walk with the knowledge you'll never walk alone.
~ attributed to actress Audrey Hepburn
Why Gordon Livingston Writes About His Life
"Writing about [events in my life] has been a way of processing them. Not only tragedies like the deaths of my sons, but other things like learning of my adoption as an adult and my search for my birthmother. These are life-altering experiences and writing about something is a good way to figure out what to make of it.
"Patients, of course, are an endless source of inspiration and stories. Psychiatry is a performance art. We talk with people; they tell us their secrets and their pain. They benefit from the conversations or not. But it’s all words in the air; our case notes are sealed and unless we write something down, the experiences are lost except to our memories. But we’re changed by these stories just as our patients are and the truths they lead us to are worth preserving. Writing down what we have learned also constitutes a kind of “ethical will,” something to convey to succeeding generations in the same way that we distribute our property. I think that we have some obligation before we die to enunciate whatever we think we’ve learned about life. So that was also a motivation to write these books, because I thought that whether anybody buys them or not, my children and their children will have this gift from me."
~ Gordon Livingston, MD, author of Too Soon Old, Too Late Smart: Thirty True Things You Need to Know Now and And Never Stop Dancing, interviewed by Bruce Hershfield for Maryland Psychiatrist |
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EXAMPLES OF ETHICAL WILLS AND LINKS TO STORIES ABOUT LEGACY WRITING
A one-paragraph ethical will (Susan Turnbull's example of how much you can say in just one paragraph (PDF)
Top five regrets of the dying. Among the top regrets of the dying: 'I wish I hadn't worked so hard'. What would your biggest regret be if this was your last day of life? (Susie Steiner, The Guardian, UK 2-1-12)
"God said Faith would move mountains, then he turned to me and asked if I'd brought my shovel."
~ Dan the Gardener
"Education is not the filling of a pail, but the lighting of a fire."
~ William Butler Yeats
Are you jealous of the ocean’s generosity?
Why would you refuse to give
this joy to anyone?
Fish don’t hold the sacred liquid in cups!
They swim in the huge fluid freedom
~ Rumi
"Not to transmit an experience is to betray it."
~ Elie Wiesel
"The greatest glory in living lies not in never failing, but in rising every time we fail."
~ Nelson Mandela
Grace McNees's final words:
"I love Jesus.
Everyone, everyone, love your Mommies."
"If you asked me what I came in this world to do, I will tell you: I came to live out loud."
~ Emile Zola
"There are no passengers on spaceship Earth. Everybody's crew."
~ Marshall McLuhan
"The ethical will is a wonderful gift to leave to your family at the end of your life, but ... its main importance is what it can give you in the midst of life."
~ Dr. Andrew Weil
"We have not inherited the world from our forefathers--we have borrowed it from our children. ~ Kashmiri proverb
"There is a wonderful mythical law of nature that the three things we crave most in life — happiness, freedom, and peace of mind — are always attained by giving them to someone else."
~General Peyton Conway March
"Tell me, what is it you plan to do
with your one wild and precious life?"
~ poet Mary Oliver
“The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope.”
~ Barbara Kingsolver
"Our souls are not hungry for fame, comfort, wealth, or power. Those rewards create almost as many problems as they solve. Our souls are hungry for meaning, for the sense that we have figured out how to live so that our lives matter so the world will at least be a little bit different for our having passed through it."
~ Rabbi Harold Kushner
"Only two things that money can’t buy
That’s true love & homegrown tomatoes."
~ Guy Clark, "Homegrown Tomatoes"
"See how the masses of men worry themselves into nameless graves, while here and there a great unselfish soul forgets himself into immortality."
~ Ralph Waldo Emerson
“We will have to repent in this generation not merely for the hateful words and actions of the bad people but for the appalling silence of the good people.”
~ Martin Luther King, Jr., in Letter from a Birmingham Jail (1963) "We've got two lives, one we're given and the other one we make..."
~Mary Chapin Carpenter, from lyrics to The Hard Way
"Our ancestors and our ancestral wisdom live in our blood and in our bones."
~ Julia Cameron
"I mean you're given all these lessons for the unimportant things -- piano-playing, typing. You're given years of lessons in how to do in normal life. But how about parenthood? Or marriage, either, come to think of it. Before you can drive a car you need a state-approved course of instruction, but driving a car is nothing, nothing, compared to living day in and day out with a husband and rising up a new human being."
~ Anne Tyler, in the novel Breathing Lessons
Don't Eat Fortune's Cookies (Michael Lewis's baccalaureate speech at Princeton)Above all, recognize that if you have had success, you have also had luck — and with luck comes obligation. You owe a debt, and not just to your Gods. You owe a debt to the unlucky.
"What we do is stay within the context of what's practical, what's real, what dreams can be fashioned into reality, what values can send us to bed comfortably and make us courageous enough to face our end with character."
~Sidney Poitier, in The Measure of a Man: A Spiritual Autobiography
Our ancestors and our ancestral wisdom live in our blood and in our bones.
~ Julia Cameron The Paradox of Choice. Psychologist Barry Schwartz takes aim at a central tenet of western societies: freedom of choice. In Schwartz's estimation, choice has made us not freer but more paralyzed, not happier but more dissatisfied.
"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover."
` Mark Twain
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