Writing an ethical will (or legacy letter)
• What is an ethical will or legacy letter?
• Kristie Miller's letter of intent
• Stanford Letter Project
• Dignity therapy
• Books helpful for leaving legacy messages
• Pat's ethical wills workshop
• Psychiatry as performance art
"Never doubt that you can change history. You already have." ~ Marge Piercy, novelist
What is an ethical will?
On a separate page is a list of the documents you need to protect your own and your survivors' rights.)
An "ethical will" (whatever it is called, including "a legacy letter") 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. “...Putting together an ethical will early on helps you live life with more intention," said Barry Baines, quoted in a New York Times story. That way, life can be richer, he said, adding: "We’re built for story and narrative.”'
Also called a legacy letter, a farewell letter, a life letter, a love will, a testament, and an “ending note,” among other things, 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 briefly 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, the idea is to 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 (go here for more about them)-- and lawyers frown on the use of the terms "will," "legacy," or "testament," terms that suggest a legitimate legal status -- especially, for example, in an online video leaving one's final "wishes," which might sit there forever and pose a conflict with a deceased person's final legal will and testament.
• More than Money to Give: The Value of Introducing Your Clients to Ethical Wills (Susan Turnbull, an article for the National Association of Estate Planners & Councils, Jan. 2023, with excellent examples.) Sharing the intentions and values behind an estate plan. Helping a trustee stand in the shoes of grantors. Reflecting on lessons learned along the way. Telling the story behind the money. Leaving an enduring message of love and gratitude.
"What constitutes a full life? Overall, did you accomplish something with your life that made your little corner of the world a slightly better place than you found it? ~ psychotherapist Milton Trachtenburg
The Ethical Will, an Ancient Concept, Is Revamped for the Tech Age (Constance Gustke, Your Money, NY Times, 10-31-14)
Ethical wills make for lasting gifts of life lessons and they're growing in popularity. In the sidebar are some good questions to ask. The article links to Snippets from ethical wills videotaped by Hospice of the Western Reserve (YouTube).
Ethical wills from Barry Baines, samples on Barry's useful website. Barry offers fairly expensive LifeSAGEr Training for Legacy Journey Facilitators.
Ethical Wills, Part 1 (Gary Newman, how to, guest blogging on Gail Rubin's A Good Goodbye site . Here's Part 2.
Excerpts from contemporary ethical wills (Susan Turnbull's website-- see also Susan's book, The Wealth of Your Life; A Step-by-Step Guide for Creating Your Ethical Will
“History will judge societies and governments — and their institutions — not by how big they are or how well they serve the rich and the powerful, but by how effectively they respond to the needs of the poor and the helpless.” ―Cesar Chavez
"I think people learn not through edict , but through stories." ~ Michelle Obama
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.
The Moral Bucket List (David Brooks, OpEd, NY Times, 4-11-15, from his book The Road to Character) "The résumé virtues are the skills you bring to the marketplace. The eulogy virtues are the ones that are talked about at your funeral — whether you were kind, brave, honest or faithful. Were you capable of deep love?"
David Foster Wallace, in His Own Words (the commencement address he gave to the graduates of Kenyon College in 2005, posted on MoreIntelligentLife.com)
Dear Kids (John Dickerson, Slate 5-8-14). This Mother’s Day, write a letter to your children. Leave them something for after you’re gone. ""I know about her grit not because I witnessed it (I was too young) and not because I asked about it (I was too self-obsessed) but because I discovered it in the personal papers she left me after she died."
Digital Messages for Loved Ones From Beyond the Grave (Paul Sullivan, Wealth Matters, NY Times, 10-23-15) Digital services like SafeBeyond are relatively new" and "they could become problematic to heirs if not used correctly, lawyers and planners said. And the nature of SafeBeyond and similar services — online and private except to those explicitly given access — also raises broader issues about digital assets in an estate." (SafeBeyond "keeps written and video wishes safe and private until its users are gone or until a set time. SafeBeyond, which likens itself to Dropbox for the hereafter, is one of several similar cloud-based systems." Sharon Klein, managing director of family office services and wealth strategies at Wilmington Trust, says that with " digital assets, who is entitled to have access is a big issue." Mr. Zur, SafeBeyond's founder, calls it "emotional life insurance," but adds that "people need to designate a trustee for what they record or write and store in SafeBeyond. That person will have the responsibility of tracking down family and friends whose email addresses and phone numbers may have changed by the time they are supposed to receive the messages."
Do Not Lose Heart, We Were Made for These Times (Clarissa Pinkola Estes, posted on DailyGood) "When a great ship is in harbor and moored, it is safe, there can be no doubt. But … that is not what great ships are built for."
"Years from now, when you speak of this, and you will, be kind." ~ Laura Reynolds in Tea and Sympathy
Kristie Miller's Letter of Intent
Let your family and friends know what you want done if you are ill, incapacitated, or facing the end of life. Kristie Miller did just that in the following selection, first published on December 5, 2003, and reprinted here by permission.
"Do you have a letter of intent?" my doctor asked during my annual physical exam last spring, after posing her standard questions about using my seat belt and checking my smoke alarm batteries.
Was a letter of intent the same as a living will, I asked, referring to the directive that explains one's wishes for ceasing heroic measures in the case of a persistent vegetative state.
No. A letter of intent is not about ending life, but about what I would want out of life if a stroke or other disability reduced my mobility and perhaps even made it impossible for me to express my wishes.
A wonderful idea, this. At my time of life -- 59 next Tuesday -- I have a number of elderly friends and relations whose wishes I try to intuit, with who knows how much success.
A letter of intent, therefore, would seem to promise comfort not only to me, but also to my children or other caregivers.
Nevertheless, I've put it off. I've been busy, sure, but it's also the sort of thing it's hard to think about when one is, if not in the prime of life, at least in reasonably robust good health.
As my birthday looms, it seems like a good time to grapple with what I'd like in my decline.
So here goes:
"Dear Children,
"Here are some of the things that would make me happy.
"Sunshine, first of all. Park me in a sunny spot every morning, please. Maybe with a view of a bird feeder. If it's cloudy, try one of those lamps that are said to mimic the sun's stimulating effect.
"Next, massage therapy. Even now, I like to get body work on a regular basis. A good brisk professional massage does wonders for my back when it's stiff from hours at the computer keyboard. It also soothes my arthritic feet and hands. In general, it improves circulation, aids relaxation, and leaves me happy and mellow. Old folks whose partners have died are often starved for human touch. And even non-professionals can give a good back rub or a little foot massage.
"I'd like to have nearby a tape recorder (or whatever technology has replaced it by then). I may not be able to follow new material, but play me recordings of stories that I've known for years. W. Somerset Maugham's and O. Henry's short stories; P. G, Wodehouse and James Thurber for fun; and the novels of Jane Austen.
"Poetry, too -- John Donne, Stephen Crane, the sonnets of Edna St. Vincent Millay, and anything in the Mack, Dean and Frost anthology I had in a college class with the poet Daniel Hughes forty years ago. You will find it on my bookshelf, read to tatters. When you have time, your own dear voices reading those selections would give me great pleasure.
"And music! Robert Schumann's Piano concerto in A Minor, Mozart's Requiem, anything by Beethoven. And of course, rock and roll songs from the Fifties and Sixties!
"I've never been much of a gardener, but I think I'd like to have some plants nearby. I love lilacs, and narcissus, especially the ones planted in gravel that I could watch open day by day.
"Pets are good company. Perhaps an older dog from the pound, who would lie quietly with her head in my lap. A bird might be nice, too, like the parakeet we used to have, hand-raised so it was tame enough to land on my shoulder.
"I'm looking forward to being old enough it won't matter anymore what I eat! I'll want eggs every morning, and the dark meat of chicken, both of which I strictly ration now. I hope I can still enjoy fruits -- almost any kind, though I have a special fondness for stewed apricots or fresh raspberries.
"Thank you for looking after me. I hope it gives you one tenth of the pleasure it gave me to look after you when you were small."
There, I've done it. You do it, too, if not today, then at least on your next birthday.
Copyright News Tribune, La Salle IL. Reprinted by permission of Kristie Miller, author of Isabella Greenway: An Enterprising Woman.
And check out
Kristie Miller's website
The Awakening (by Sonny Carroll)
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.
The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)
Be sure not to die without having written A LOVE LETTER TO YOUR HEIRS (Robert Powell's interview with Susan Turnbull, USA Today, 3-1-17). Go here for a nicely formatted PDF version, easy to print and share. Here's Susan T on what to include in an ethical will: " There is no such thing as a standard ethical will. What they have in common is that each author has considered what they want their audience to know without question, and committed to putting it down in an enduring fashion. It might be an expression of love and gratitude, or reflections on life experiences that reflect core values and lessons learned. It can be a place to preserve information or family stories that would otherwise be lost to history. Ethical wills are an excellent place to provide explanations of decisions behind an estate plan or charitable bequest, or as a place to document the story behind the money. Some ethical wills take the form of lists of snippets of wisdom, or in one case a list of favorite movies. Watch these, said its author, and you will understand me."
A fuller explanation of ethical wills (or legacy letters)
• Susan Turnbull on why to write an ethical will (30-minute podcast, on Ebb and Flow) Susan succinctly explains the "why" -- a non-binding complement to the estate plan. Examples of effective ethical wills.
To be read in the event of my death (Carol Burke, Narratively). A writer embedded in Afghanistan takes an intimate look at one of war’s most private and painful traditions. "In those days before my deployment, I felt relieved after writing my death letters. I had completed an act that, in all its ritual exactness, left me with a strange sense of protection. The prophylactic move had made it much easier to enter that bizarre land of war. To my astonishment and relief, after writing them, I never again dreamed of my own death."
Aha! Moments (Oprah). I used to have an item here called "The Aha Moment" (Mutual of Omaha), but then: Schott's Vocab (NY Times,11-12-09) The insurance company Mutual of Omaha and Oprah Winfrey‘s production company Harpo Productions Inc. have settled a dispute concerning the phrase “ aha moment,” after Mutual starting using the slogan “official sponsor of the aha moment” in a national advertising campaign. Harpo asked Mutual in a letter to stop using “aha moment” to promote its insurance and financial products because it didn’t want confusion about whether there was a relationship between Mutual and Winfrey. Winfrey’s representatives argued in April that the phrase was synonymous with Winfrey and her show. The Aha Moment (Mutual of Omaha)
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:
• The Legacy of Our Stuff (6-30-11) Sensible project! Do this with YOUR stuff!)
• How to Apologize in 6 Steps ) (Huffpost 5-30-11)
“Hate will not drive out darkness only light can do that; Hate will not drive out hate, only love will do that.” ~Dr. Martin Luther King Jr.
• Legacy Writing: A Spiritual Practice (Huffpost 12-30-11)
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
"Never doubt that you can change history. You already have."
~ Marge Piercy, novelist
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.
‘Hey, Google! Let me talk to my departed father.’ (Peter Holley, Technology, Washington Post, 8-29-18) The silver-haired 78-year-old Andrew Kaplan would like his loved ones to have access to the stories of his many adventures, even when he’s no longer alive to share them. Kaplan has agreed to become “AndyBot,” a virtual person who will be immortalized in the cloud for hundreds, perhaps thousands, of years. If all goes according to plan, future generations will be able to interact with him using mobile devices or voice computing platforms such as Amazon’s Alexa, asking him questions, eliciting stories and drawing upon a lifetime’s worth of advice long after his physical body is gone. Will the rise of virtual beings be the next step in the human quest for immortality?
A Historian's Long View On Living With Lou Gehrig's (Fresh Air, NPR, 3-29-10). Tony Judt has an intellectual mind trapped in an immobile, failing body. He says in this interview with Terry Gross "I am much more conscious than I ever was, for obvious reasons, of what it will mean to people left behind once I'm dead. It won't mean anything for me, but it will mean a lot to them, and it's important for them, by which I mean my children or my wife or my close friends, that some spirit of me is, in a positive way, present in their lives, in their heads, in their imaginings and so on. So in one curious way I've come to believe in the afterlife as a place where I still have moral responsibilities, just as I do in this life except that I can only exercise them before I get there."
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
Legacy Letters, or How to write your own obituary (Heather McElhatton interviews Dr. Barry Baines, A Beautiful World, Minnesota Public Radio) Do you know your great-grandparents names? Heather McElhatton talks to Dr. Barry Baines, who says most people don't, which means statistically, your great-grandchildren probably won't know your name either...Unless you do something.
Legacy Writing (John F. Evans, Psychology Today, 3-9-14)Documenting your life experiences, values, and opinions to share with others--a gift to them, healing for you.
The Opposite of Loneliness (by Marina Keegan, who wrote this for the Yale Daily News, which printed it the week before she died in a car accident at 22). See also The Lost Voice of A Generation (Carolyn Gregoire, Daily Good, syndicated from HuffPost 7-28-14)
Lights, Camera...Last Words (Kristen McNamara, WSJ, 12-3-09, on video offering chance for last words, and heading off legal disputes)
Missionary, nurse, activist reflects on growing old (Chris Hubbuch, AP, Washington Times, 3-20-17) June June Kjome, 96, says three things make life worth living: faith, family and friends. There’s no sense complaining or worrying. “Get off your duff and do something,” Susan Hessel helped her put her life story and lessons learned in a book.
Morphine, Ice Cream, and Chocolate: My End of Life Wishes (Sara Perry, October 2010). Sara was a student in my life story writing workshop at the Writer's Center in Bethesda.
My Dad Created An ‘Ethical Will.’ Here’s What That Means And Why You May Want One Too. (Carrie Friedman, HuffPost, 6-20-2020) What do you want people to remember about you and integrate into their own lives? What do you want your legacy to your community and your children to be after you’re gone? A legacy is a circle, a chain reaction that never ends.
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."
Seneca on How to Fortify Yourself Against Fear and Misfortune (Brain Pickings, 2-15-16) “If you would not have a man flinch when the crisis comes, train him before it comes.”
7 crucial lessons people often learn too late in life (Nicolas Cole, Business Insider, 5-5-17)
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!
Woody Allen: What I've Learned (Cal Fussman's interview, Esquire, Sept. 2013)
Writing and Reading Ethical Wills (Rabbi Jack Riemer, My Jewish Learning)
"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."
~ quoted 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")
Dignity therapy
"When you are standing at death's door and you have a chance to say something to someone, I absolutely think that that proximity to death is going to influence the words that come out of your mouth."~psychiatrist Harvey Max Chochinov, author of the highly regarded book Dignity Therapy: Final Words for Final Days
• For the Dying, A Chance to Rewrite Life (Alix Spiegel, Morning Edition, NPR 9-12-11). Listen or read transcript of this
• 'Dignity Therapy' Gives Comfort to Dying Patients (Denise Mann, WebMD, 7-6-11) Study shows therapy is helpful for terminally ill patients and their families
• A Study of Dignity Therapy on Distress and the End-of-Life Experience (Eric Widera GeriPal, a geriatrics and palliative care blog, 9-5-11). Includes criticism of the process.
Dignity Therapy: Final Words for Final Days by Harvey Max Chochinov
"We are travelers on a cosmic journey, stardust, swirling and dancing in the eddies and whirlpools of infinity. Life is eternal. We have stopped for a moment to encounter each other, to meet, to love, to share. This is a precious moment. It is a little parenthesis in eternity." ~ Paulo Coelho
The Stanford Letter Project
• Writing a ‘Last Letter’ When You’re Healthy (VJ Periyakoil, MD, Well, NY Times, 9-7-16) A Stanford University project guides people — healthy or not — to write a letter to their loved ones so they won’t have regrets at the end of life. 'With guidance from seriously ill patients and families from various racial and ethnic groups, we developed a free template for a letter that can help people complete seven life review tasks: acknowledging important people in our lives; remembering treasured moments; apologizing to those we may have hurt; forgiving those who have hurt us; and saying “thank you,” “I love you” and “goodbye.”
'These letter templates are specifically designed to help you voice the key information needed to help you prepare for the future. Use the Stanford Letter Project tools today to write to your doctor, your friends, and your family. It is free, easy, and extremely important.’
• The seven tasks of life review: The 'who matters most' letter (Stanford Medicine Letter Project) The goal of this Who Matters Most Letter template is to help all Americans complete the seven vital tasks of life review while they still can.
Task 1: Acknowledge the important people in your life.
Remember treasured moments from your life.
Task 3: Apologize to those you love if you hurt them.
Task 4: Forgive those who love you if they have hurt you.
Task 5: Express your gratitude for all the love and care you have received.
Task 6: Tell your friends and family how much you love them.
Task 7: Take a moment to say "goodbye."
• ****Letter Project (video, YouTube, samples from life)
• Life Review Letter Complete the seven tasks of life review in minutes using their
simple template. Topics covered: Acknowledging the important people in your life, remembering treasured moments from your life, apologizing to those you love if you hurt them, expressing your gratitude for all the love and care you have received, telling your friends and family you love them, taking a moment to say goodbye. On this page is a link to watch videos of Dear Friends and Family letters.
• We Need a Role Reversal in the Conversation on Dying (VJ Periyakoil, MD, The End, NY Times, 4-22-15) In most doctor-patient conversations, the doctor leads the way. But when it comes to planning for the end of life, we need a role reversal. The patient — you — may have to take the lead in conducting end-of-life conversations. Doctors are hampered by the culture of silence about death in most medical practices.
• About the Stanford Letter Project (Stanford Medicine)
• Patient videos (Stanford Letter Project)
• The most important letter you may write Q&A with V.J. Periyakoil, MD. "There is a tipping point in the trajectory of every illness when treatment is ineffective and burdensome. Beyond this tipping point, high-intensity treatments do not prolong life with quality but rather prolong the dying process. But our health-care system does not often identify this tipping point, and odds are that most patients will be subjected to high-intensity treatments regardless of their values and preferences for care." "The letter addresses some important practical issues that are not currently addressed in the advance directive document. It clarifies the patient’s stance on palliative sedation should pain and symptoms become refractory. Most importantly, it offers guidance to the doctor about what to do when the health-care proxy overrides the patient’s stated wishes. We created an app that uses the letter template to generate pre-filled advance directives. By answering a few simple questions, patients are able to complete both the official advance directive and the letter (as a supplement to the advance directive) and to send the documents to their doctors to be saved in their medical records."
• Use the Letter Project form to complete your Advance Directives in Minutes!
• Dear Doctor app. A fill-in-the-blanks app that you can use as a model for something you write on your own.
• No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End-of-Life Conversations with Diverse Patients (Vyjeyanthi S. Periyakoil, Eric Neri, Helena Kraemer, research article, PLOS One, 4-22-15) Doctors report struggles with conducting effective EOL conversations with all patients and especially with those whose ethnicity is different from their own. Doctors reported six barriers in conducting effective end-of-life conversations with dying patients:
(1) Language and medical interpretation issues. Medical jargon is difficult to translate into other languages and approximate translations may not convey the true intended meaning.
(2) Patient/ family religious and spiritual beliefs about death and dying. Doctors reported that "religious and spiritual beliefs greatly influenced how ethnic patients perceived EOL issues ranging from (i) an unwillingness to discuss EOL issues or plan ahead due to their beliefs that the timing and nature of a person's death should be determined “by the will of God” and humans should not tamper with the process (ii) religious taboos about withholding/withdrawing high intensity interventions at the EOL (iii) as families were praying for miracles and thus refused to engage in EOL discussions and planning even in the face of impending death; and (iv) patient/family beliefs that the specific circumstances around the death impacts the patient’s afterlife and they were reluctant to participate in actions that may in some way alter the timing and course of death.
(3) Doctors’ ignorance of patients’ cultural beliefs, values and practices
(4) Cultural differences in truth handling and decision making
(5) Patient/family's limited health literacy
(6) Patient/family’s mistrust of doctors and the health care system.
In short, there is an urgent need to train doctors in our diverse culture to conduct culturally effective end-of-life conversations early in the trajectory of any chronic and serious illness in order to facilitate dignity at the end-of-life.
Books helpful as you write 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.)
• Allison, Jay and Dan Gediman, editors. This I Believe: The Personal Philosophies of Remarkable Men and Women (based on the NPR series of the same name, with a foreword by Studs Terkel)
• 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
• Brainard, Joe.I Remember His method was brilliantly simple: to set down specific memories as they rose to the surface of his consciousness, each prefaced by the refrain "I remember." Read it for itself and inspiration or use it as a set of member prompts for your own writing, e.g., from pop culture ("Love Me Tender") to food ("I remember Oreos and 'Payday' candy bars).
• 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
• Gelb, Alan. Having the Last Say: Capturing Your Legacy in One Small Story. As one Amazon review puts it, "aims to help you craft your final narrative, a short (up to 1500 words, typically) memoir that defines you and leaves something memorable for your loved ones. In the process, the writer might also, by performing this life review, achieve that sense of integrity and accomplishment that psychologist Erik Erikson says is essential for healthy elderhood."
• 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)
• Lawson, Doris McCullough. Posterity: Letters of Great Americans to Their Children
For example, this excerpt from Sherwood Anderson's letter to his eighteen year old son:"Draw, draw, hundreds of drawings. Try to remain humble. Smartness kills everything. The object of art is not to make salable pictures. It is save yourself. The thing, of course, is to make yourself alive. Most people remain all their lives in a stupor. The point of being an artist is that you may live."
• 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
• Newhouse, Margaret L. Legacies of the Heart: Living a Life That Matters. Be sure to take a look at this one.
• 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)
• Quinlan, Mary Lou. The God Box: Sharing My Mother's Gift of Faith, Love and Letting Go After her mother died, Mary Lou went searching for the God Box. But rather than one box, Quinlan found 10 containers stuffed with hundreds of origami-like folded papers containing prayers and messages about living)
• Redmond, Lea. Letters to My Grandchild: Write Now. Read Later. Treasure Forever. A good gift for grandparents.
• 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.
• Smith, Hyrum W. What Matters Most : The Power of Living Your Values
• 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)
• Stratton, Penelope L. and Henry B. Hoff Guide to Genealogical Writing
• 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
• Wilson, Timothy D. Redirect: Changing the Stories We Live By . I found this book through an excellent story on the topic: Writing Your Way to Happiness by Tara Parker-Pope (Well blog, NY Times, 1-19-15)
The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)
"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
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.
Pat's ethical will workshop
You're in good health — why be so morbid? Participants in Pat's first 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.
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.
Psychiatry as 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
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 |
• Mini-Biographies Help Clinicians Connect With Patients (Bram Sable-Smith, Kaiser Health News, 6-10-19) Bob Hall was recovering from yet another surgery in March 2014 when a volunteer walked into his hospital room. It had been a rocky recovery since his lung transplant three months earlier at the William S. Middleton Memorial Veterans Hospital in Madison, Wis. The volunteer wasn’t there to check on his lungs or breathing. Instead, she asked Hall if he wanted to tell his life story. When the story is finished, it’s attached to the patient’s electronic record, where a doctor or nurse working anywhere in the Veterans Affairs medical system can read it. Today more than 2,000 patients at the Madison VA have shared their life stories. Project organizers say it could change the way providers interact with patients. See also Storytelling Helps Hospital Staff Learn About the Person, Not Just the Patient (Bram Sable-Smith on Morning Edition, NPR, 6-3-19). Listen or read the transcript, or both.
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