End-of-Life Choice, Palliative Care and Counseling

Posts Taggedend-of-life conversation

Campaign Aims to Spur End-of-Life Conversations Within Families

By Kay Lazar
The Boston Globe
August 29, 2012

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. More

Easy New Format for Advance Directive

Arrives for National Healthcare Decisions Day on April 16th

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.

Politics trump policy on ‘death panels’

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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.

Things we are grateful for this year

(Via Alexandra Drane at Engage With Grace)

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
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.

End-of-life Conversation Provision Fact Sheet

Seniors want to protect their loved ones from struggling with end-of-life decisions
because they aren’t clear on what Mom or Dad would want. If someday they can’t speak for
themselves, they want their families and their doctor to be clear about their values and
choices. Individuals are the best decision-makers when it comes to these very personal,
private health care choices. The Pew Research Center found 84% of Americans approve of
letting patients themselves decide about extraordinary treatments to prolong life.

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.”