Rabbi Howard Kummer spent years guiding others through wrenching life-and-death decisions. As a chaplain at Newton-Wellesley Hospital, he ministered to patients tethered to life support machines, and would later tell his wife he never wanted to be kept alive that way.

But he did not get around to discussing his feelings with their three grown children, even after he was diagnosed with a brain tumor.

Then he had a catastrophic brain hemorrhage that left him near death, and his children were unprepared. They hesitated when a physician suggested stopping aggressive treatment.

“I knew what he wanted,” said his wife, Nancy. “I had had this discussion many times with him, but the kids hadn’t and they weren’t ready to let go.”

With death and dying, most Americans engage in a conspiracy of silence, surveys show, failing to discuss their final wishes until it is too late. A new Massachusetts-based coalition aims to change that.

Called The Conversation Project, the national campaign encourages open and honest discussions among families and friends about how they want to live life at the end, so that their wishes will be followed.

There have been other smaller-scale efforts to spark discussions among families and with doctors, but The Conversation Project has big financial backing from foundations and big names, including Dr. Don Berwick, former head of the Medicare program, and former Boston Globe columnist Ellen Goodman, a winner of the Pulitzer Prize.

The effort also has a partnership with ABC News.

A “starter kit” on the project’s website helps jumpstart end-of-life conversations. It asks visitors to answer this question: “What matters to me at the end of my life is _____.”

It suggests gentle ways for people of all ages to prompt a conversation with family or friends, by saying, for instance, “I need your help with something.” And it describes issues for people to think and talk about, from the level of medical interventions they might want, to a primer about legal documents that stipulate a person’s wishes.

The project was cofounded by Goodman, who spent a career communicating other people’s stories but neglected to have a detailed conversation with her mother about her preferences.

“I knew my mother’s attitudes in the most general sense,” she said. “But I never thought to ask my mother, for instance, where on the continuum are you, about being afraid of not getting enough care and getting too much care.”

Goodman said that because they had not had those discussions before her mother was incapacitated from dementia, she was torn while making complex decisions for her medical care.

Goodman’s mother died six years ago.

The project’s website suggests people have an ongoing conversation, not one that happens in one sitting. Writing a letter can be one way to start the conversation.

“DON’T PANIC — IT’S OK,” is how Karen Boudreau, a family physician, started a hand-written letter to her family when she became involved with The Conversation Project during its formation.

At the time, she was a senior vice president at the Institute for Healthcare Improvement, a Cambridge organization that is collaborating on the project.

Boudreau’s letter advises her family members to not worry or feel guilty if they have to make decisions for her care that they had not previously thought to discuss.

“If you’re faced with a snap decision, don’t panic — choose comfort, choose home, choose less intervention, choose to be together, at my side, holding my hand, singing, laughing, loving, celebrating and carrying on,” wrote Boudreau, now chief medical officer at Boston Medical Center’s HealthNet Plan, and, at age 51, in good health. “I will keep loving you and watching you and being proud of you.”

The Kummer children, including one now a rabbi herself, ultimately chose less intervention, too, after their 67-year-old father’s brain hemorrhage.

They signed a form to not have him resuscitated if his heart failed.

“In a very short time, we put together a nice little ceremony,” said Nancy Kummer, now 81 and living in Dedham. “One of them talked to him, one sang songs to him, one read some psalms to him, each in his or her own way, and then we said our goodbyes.”

Yet 13 years after her husband’s death, Kummer admitted that she has not had an in-depth conversation with her children — now ages 52, 51, and 47 — about her end-of-life wishes.

Nancy Kummer, a former social worker, used to counsel people with terminal illnesses and now lives in a retirement community where, she said, she is “surrounded by increasing fragility and illness and vulnerability so it’s in my face all the time.”

Still, she is having a hard time starting that conversation.

“There is a human tendency,” she said, “to postpone uncomfortable or unpleasant tasks.”

Getting Americans to put their end-of-life wishes in writing has not fared much better.

More than three-quarters of those surveyed said it is important to express their written preferences, yet fewer than 1 in 4 have done that, according to a recent survey by the California HealthCare Foundation.

But momentum may be building. Since its launch in October 2008, there has been steadily growing traffic on the website Engage with Grace , an online campaign aimed at prompting end-of-life discussions, said cofounder Alexandra Drane, who runs a Danvers software company focused on health care.

Her firm particularly seems to be hearing from a lot of baby boomers who have had bad experiences with decision-making in their parents’ deaths because they failed to have meaningful conversations beforehand, and now want to help others avoid that mistake.

“We are coming across more friends, and kindred spirits,” Drane said, “who have decided this will be their mission.”

Compassion & Choices, the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today announced a new resource to aid all Americans in advance care planning. In time for the fifth annual National Healthcare Decisions Day (NHDD), Compassion & Choices is offering free advance directive forms specific to every state, in an editable PDF format. The new format eases the completion of an advance directive, and Compassion & Choices offers additional tools to facilitate the process.

“We can’t control everything about our death. But if we communicate effectively, we make it more likely that our wishes for the end of life will be known and respected,” said Barbara Coombs Lee, president of Compassion & Choices. “Recent studies indicate the single most powerful thing a person can do to improve the chance for gentle dying is — simply and courageously — to talk about it.”

Compassion & Choices offers a Good-to-Go Toolkit and Good-To-Go Resource Guide to help define priorities, understand who to talk with and find ideas on how to get the conversation rolling. These planning tools and editable state-specific advance directive forms can be downloaded at CompassionAndChoices.org/G2G, free of charge.

Over a thousand organizations joined this year to promote NHDD, an initiative to encourage the majority of Americans who have not yet done so to complete advance directives.

For more information please visit www.compassionandchoices.org

Compassion & Choices is a nonprofit organization working to improve care and expand choice at the end of life. We support, educate and advocate.

By: Brett Coughlin
January 5, 2011 06:34 PM EST

A federal regulation to pay for end-of-life counseling — dubbed “death panels” by critics — has been pulled by the White House . . . .

Barbara Coombs Lee, president of Denver-based Compassion and Choices – an organization that works to improve end-of-life care – said she is disappointed with the decision to pull the reg.

“Including advance planning in the wellness visit was the right thing to do. The volume of data and every respected, knowledgeable expert in the country confirmed that it was the right thing to do. We hope that what the White House has said is true and that this is some minor procedural clean up and that advance planning will be back in the wellness visit,” Coombs Lee said.
READ THE FULL STORY AT POLITICO.COM >>

For three years running now, many of us bloggers have participated in what we’ve called a “blog rally” to promote Engage With Grace – a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes.

The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post.  They’re not easy questions, but they are important – and believe it or not, most people find they actually enjoy discussing their answers with loved ones.  The key is having the conversation before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings … and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition.  We’ve supported each other’s efforts.  And we’ve helped make this a topic of national importance.

So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.

Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece on “letting go” – it is a work of art, and a must read.

Thank you to whomever perpetuated the myth of “death panels” for putting a fine point on all the things we don’t stand for, and in the process,  shining a light on the right we all have to live our lives with intent – right through to the end.

Thank you to TEDMED for letting us share our story and our vision.

And of course, thank you to everyone who has taken this topic so seriously, and to all who have done so much to spread the word, including sharing The One Slide.

The One Slide

We share our thanks with you, and we ask that you share this slide with your family, friends, and followers.   Know the answers for yourself, know the answers for your loved ones, and appoint an advocate who can make sure those wishes get honored – it’s something we think you’ll be thankful for when it matters most.

Here’s to a holiday filled with joy – and as we engage in conversation with the ones we love, we engage with grace.

Fact: Advance planning consultations are a completely voluntary, not mandatory.
Fact: No one will be forced to sign an advance care directive.
Fact: The consultation provision is endorsed by the Providence Health System, a Catholic
health care provider.
Fact: Only a doctor or nurse practitioner can provide counseling.

STUDIES: End-of-life discussions decrease suffering and distress for patients and loved ones
“The worst outcomes were seen in patients who did not report having these
conversations. By acknowledging that death is near, patients, caregivers, and physicians
can focus on clarifying patients’ priorities and improving pain and symptom management.”

Hospice patients live longer
“This study provides important information to dispel the myth that hospice hastens
death and suggests that hospice is related with the longer length of survival by days or
months in certain terminally ill patients. This extra time might be particularly important to
patients and their families, as it may allow some people to use the end of life as a time of
resolution and closure.”

End-of-life discussion only taking place about half the time
“Many patients diagnosed as having metastatic lung cancer had not discussed
hospice with a provider within 4 to 7 months after diagnosis. Increased communication with
physicians could address patients’ lack of awareness about hospice and misunderstandings
about prognosis.”

READ THE FULL FACT SHEET>>