The Ethical Will: Life Is About More Than Your Possessions

Reprinted from:  https://www.nextavenue.org/ethical-will/

Have you considered how to pass on your non-material assets?

By Deborah Quilter
April 11, 2019

When people find out Debby Mycroft helps people write ethical wills, she always gets a predictable response: The Lament.

“They say, ‘Oh, I wish I had a letter from my dad or grandmother or great aunt,’ whoever that person was. I have not come across a single person who has not wanted a letter from that special person,” says Mycroft, founder of Memories Worth Telling.

Unlike legal wills, ethical wills — also known as legacy letters — are not written by lawyers, but by you. They can include life lessons, values, blessings and hopes for the future, apologies to those you fear you may have hurt or gratitude to those you think you have not thanked enough. Traditionally, they were letters written by parents to children, to be read after death.

People who do not have children address them to friends or groups. One of Mycroft’s clients was placed in child protective services when she was quite young because her parents were addicts. “She had a rough upbringing. She intentionally decided not to have children herself. But she wanted to write an ethical will to other foster kids to let them know [they] can survive this,” Mycroft explains.

Why Write an Ethical Will?

Think that your life isn’t important enough to warrant an ethical will? Mycroft disagrees, saying, “You don’t have to be a war hero or a Nobel Peace Prize winner for your story to have value. When people accept awards at the Olympics, they thank the people who had an impact on their life, like Mom or Dad, who was always there to take them to training.”

But there’s an even more important reason you might want to consider a legacy letter. According to Barry K. Baines, author of Ethical Wills: Putting Your Values on Paper, such documents can bring enormous peace of mind.

Baines recalls one dying patient who was bereft because he felt there would be no trace of him when he left. “The first wave would wash away his footprints. That sense of hopelessness and loss was overwhelming,” says Baines. The man rated his suffering at 10 out of 10; after he wrote his ethical will, his suffering reduced to zero.

Don’t wait until you are on your deathbed to do this, Baines warns. As soon as you articulate your values, suddenly you start to live your life more intentionally. Especially if you share it.

Ethical Will: Telling Your Own Story

If you don’t feel capable of writing your legacy letter yourself, you can use an online template, take a workshop, read a book about it or work with a professional writer.

But don’t judge your skills harshly. Baines finds that whether people are educated or not or if their letters are simple or complex, they always have a certain elegance because of the truth they contain. “When the families get one, they just glow,” Baines says, adding, “This is a unique gift that only you can give.”

When you write your letter, don’t just say, “My core values are consideration, gratitude, kindness, simplicity,” advises Mycroft. Tell a story about how you’ve lived these values.

In her own legacy letter, Mycroft told her kids about a temp job she had as a teen. She appeared nicely dressed in a skirt, blouse and heels. When she walked in, the employers gave her a funny look and asked, “Why do you think you are here?”

She explained the agency had sent her out for secretarial work. Then her employers handed her a hard hat and steel-toed shoes. “That’s when I look at them quizzically.”

Turns out they were a plastic-bag manufacturer and she was supposed to sort through damaged goods to salvage the ones that could be sold.

“I was so angry that that agency had sent me out on that job. It was hot and humid in Virginia. I was fuming,” Mycroft says. “When I got home, my parents started grilling me. They said, ‘Did you agree on this job?’” And Mycroft confirmed that she did.

They asked what the contract said. Mycroft replied that the contract was pretty clear. Did she sign the contract, her parents wanted to know?

“Yes, but,” she says she told them. “And my parents said, ‘You signed it; you’re committed to it.’”

Mycroft stuck with the job as promised. “That was my first lesson in integrity, perseverance and diligence,” she recalls. She did what she said she would do. As a postscript, she got fantastic jobs from the agency over the rest of the summer. They knew they could count on her.

What Goes Into the Legacy Letter and What Stays Out

Ethical wills are often likened to letters from the heart, so perhaps the best advice is to literally write a love letter.

Love letters don’t recriminate. They don’t judge. They don’t scold. A love letter is there to show how much someone matters to you.

Criticisms and judgments should be left out, advises Mycroft. It’s okay to include regrets and family secrets, even if they hurt. If worded properly, these could bring the family to a place of acceptance and understanding.

She notes, “Sometimes when those things are hidden for so long it causes a lot of resentment — as in] why didn’t they tell me I was adopted? I wish I had known.”

“Definitely avoid manipulation,” Mycroft advises. “Legacy letters are beautiful expressions of love and encouragement, telling other people what is so fantastic about them. I do not think they should be hands reaching up from the grave slapping you or saying, ‘I told you so.’”

Think about how your letter might be received. Baines worked with a woman who had a very hard life. “Every part of her ethical will was blame and guilt-tripping,” he recalls. While some people can turn around a bad experience and use it is an example of what not to do, this woman could not.

“It almost seemed like she was purposely trying to hurt people,” Baines says. But eventually she realized that and gave up, sparing her family the hurt she would cause them.

Get a Second Opinion

Baines believes writers should show their legacy letter to a trusted friend before passing it on, to avoid inadvertent errors. Your reader might say, “You mentioned your two children, but you only write about one and not the other.” That could be extremely hurtful.

Baines also urges people to share the letters while they’re living. It might be painful, but there’s still potentially an opportunity to mend wounds. After you die, there’s no recourse at all.

What About Videos or Selfie Videos?

Some people make videos or selfies of their ethical wills, but keep in mind that technologies can become outmoded.

Mycroft gave both her children the letter and a video of her reading the letter so they not only have her words, but can also hear her voice.

“I’ve heard of people saving voicemails of people who have passed on,” she says. “Can you imagine saving a voicemail and all it says is ‘Susie, are you there? Can you pick up? Hello?’ If you’re willing to save that message just to hear their voice, how much more powerful would it be to hear your voice reading that letter?”

The Time Is Now

The time to write your spiritual legacy is now. Mycroft provides a case in point about her mother, who knew the family lore and lineage.

“I gave her one of these fill-in-the-blank family history books because I wanted to make sure it was preserved,” says Mycroft. “Five years later, when she had passed away and I went to clean out her office, I found the book. It was completely empty.”

Deborah Quilter is an ergonomics expert, a certified Feldenkrais practitioner, a yoga therapist and the founder of the Balance Project at the Martha Stewart Center for Living at Mount Sinai Hospital in New York. She is also the author of Repetitive Strain Injury: A Computer User's Guide and The Repetitive Strain Injury Recovery Book.

‘End Game’ Film Shows the Struggle in End-of-Life Decisions

Republished from: https://www.nextavenue.org/end-game-documentary-end-of-life-decisions/

The Oscar-nominated documentary also spotlights palliative and hospice care

By Deborah Quilter
April 9, 2019

In a pivotal scene of the documentary End Game, we listen in as a team of palliative care professionals discusses Mitra, a 45-year-old woman who is dying of cancer. Should they approach her about hospice? The hospital chaplain urges the group not to bring it up. She had spoken to Mitra’s mother, who told the chaplain that to Mitra, hospice means death. Dr. Steven Pantilat, a palliative care specialist, agrees with her assessment, noting: “Healthy people want to talk about how they want to die. Sick people want to live.”

This exchange in End Game (available on Netflix) captures human nature, and the delicate dilemma doctors and patients face at the end of life, under the best circumstances. Filmed in the serene hospital rooms and corridors of the University of California San Francisco Medical Center and the recently-closed Zen Hospice Project, situated in a tastefully-appointed Victorian house, we see firsthand the inner workings of hospice and palliative care.

We also see clearly how important it is to talk about these matters before we might need them.

Considering Palliative and Hospice Care

Though palliative and hospice care can greatly ease suffering, they are not easy to talk about or decide on for many patients. Some of the people in the 40-minute documentary are not ready to check out and seem to feel that accepting hospice care would mean accepting death. Their family members don’t want to let them go either.

Mitra’s husband hopes each new treatment will bring a miraculous recovery. Her mother knows her daughter will never walk again, much less recover from cancer and thinks her daughter is suffering. In one scene early in the movie, which is doubtless replicated in many hospital rooms every day, Pantilat asks Mitra’s husband and mother if they want to continue treating the cancer.

“If she were clear in her thinking and seeing herself in her bed the way she is right now, what decision would she make?” Pantilat asks. The question hovers in the air.

When Mitra’s sister flies in from Switzerland, initially there is jubilation over the reunion and we rejoice vicariously with the family. In the next scene, however, we see the sister collapsing in her mother’s arms in the hallway, weeping. Later, we see Mitra’s mother literally staggering down the hallway under the weight of her sorrow. We witness Mitra’s husband’s heart breaking, and their 8-year-old son playfully massaging his mother’s bald head.

There is joy, sorrow, love. The camera captures it all, but there is no narration. We witness the family’s struggles as they go through them in real time. This is part of the film’s power: It is easy to identify with the subjects. Viewers might feel they are losing their own family member.

The Filmmakers’ Vision: Bring Death Out of the Closet

The 40-minute film, directed by Rob Epstein and Jeffrey Friedman, was nominated for an Oscar in the category of Documentary Shorts.

The filmmakers, who won an Oscar in 1985 for The Times of Harvey Milk, wanted to raise awareness about how palliative and hospice care can give us the right care at the right time. As Friedman explained, birth and death are universal life passages, and of those, death is the one we have the option of facing consciously.

“Most of us avoid thinking about it until it’s too late. By doing that, we set ourselves up to lose control of our life story when we’re at our most vulnerable,” Friedman says. “Couple that with medical technology so advanced that we can keep nearly everyone ‘alive’ using machines — but without taking the time to talk about what the quality of that life will be. The result is that far too many people are getting care they don’t understand and don’t want.”

“End Game is about choices we make about how we want to live, when we know our time remaining will be brief,” Epstein adds. “One of our goals in End Game was to inspire conversations — not only about facing death, but about how we want to live, right up to the end.”

End-of-Life Care Explained

According to Pantilat, author of Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers, “Palliative care focuses on improving the quality of life for people with serious illness (whatever the prognosis). It alleviates symptoms like pain, shortness of breath, fatigue and nausea. It’s also about having patients communicate preferences and values, so the care team can attend to their psychological, spiritual and emotional support when they are sick.”

In the United States, hospice is a service to provide palliative care to people, largely at home. For hospice, the eligibility criteria include a prognosis of no more than six months of life and patients and loved ones who have agreed the focus will be comfort care.  Hospitalization, generally, will be avoided.

“Most of the time, hospice is not a place, but a service, although there are facilities focused only on hospice care (as Zen Hospice Project was). All hospice is palliative care, but not all palliative care is hospice,” Pantilat explains.

Many people have the misconception that once you choose palliative care, you’re not getting any other treatment for your illness. “That’s not true at all,” Pantilat says. You could have palliative care alongside chemotherapy, bone marrow transplant and many other serious illnesses. In fact, palliative care might help you live longer.

“There’s never been a study that showed that people who receive palliative care live less long. And there are studies that show that people who receive [palliative care] for the illness live longer. It’s an unmitigated good.” Pantilat says.

Help for the Family, Too

There’s another important feature of palliative care: It also attends to a dying person’s loved ones. The palliative care team will talk to family members and offer them comfort, options and counsel.

Pantilat notes: “When people ask, ‘When should my family come?’ I always say come now. If they get better and live for another six months or year or two, no harm, no foul. It’s one more visit. But if you try to time it when they’re really sick and on death’s door, they might be too sick to have a meaningful interaction or you might miss the opportunity. Things can happen suddenly.

“We try to have these conversations in advance and understand what’s really important,” Pantilat continues. “If visiting with your sister or seeing your daughter get married is the most important thing to you, now’s the time to do it. Maybe you shouldn’t wait 10 months for a wedding, because you may not make it. Instead, could your daughter move the wedding up to next month?”

And speaking of not waiting, the doctor has a message: “If you or a loved one has a serious illness, you should have palliative care. Don’t take no for an answer. Because it will help you live better and may even help you live longer.”

Deborah Quilter is an ergonomics expert, a certified Feldenkrais practitioner, a yoga therapist and the founder of the Balance Project at the Martha Stewart Center for Living at Mount Sinai Hospital in New York. She is also the author of Repetitive Strain Injury: A Computer User's Guide and The Repetitive Strain Injury Recovery Book.