End-of-Life Choice, Palliative Care and Counseling

Posts TaggedNational Healthcare Decisions Day

April 16: The Day Our Country Talks About Advance Planning

Planning a vacation is fun. Planning a wedding is exciting. Planning a meeting is important. Planning for your future healthcare is critical, which is why Compassion & Choices makes such a big deal out of National Healthcare Decisions Day (NHDD).

Every April 16, a coalition of more than 100 national organizations mobilizes to talk to as many Americans as possible about getting their healthcare wishes written down and expressing those wishes to their family, loved ones and healthcare providers. That means making sure you have an advance directive, which includes a living will (describing the treatment you want) and a durable power of attorney (designating the person who will speak for you) in the event that you are sick and cannot speak for yourself. Compassion & Choices has the tools you need to get your advance planning process started. Visit our website today by clicking here. More

National Healthcare Decisions Day around the web

“Make Your Plan” Urges End-of-Life Care Advocacy Organization

by Compassion & Choices Staff
April 10, 2013

National Healthcare Decisions Day is April 16th

Portland, OR – With only one in four Americans stating their end-of-life care decisions before they are incapacitated, Compassion & Choices today asked all Americans to “Make Your Plan” for National Healthcare Decisions Day (NHDD), April 16. The importance of planning ahead was evident in the February 6 edition of The Journal of the American Medical Association, which reported that 26% of Medicare beneficiaries spent part of their last month of life in an intensive care unit — an increase from a decade ago.

The organization offers resources free of charge, including advance directive forms for every state and tools to stimulate discussion and aid decision-making. Forms can be downloaded at compassionandchoices.org or ordered by phone at 800.247.7421.

Compassion & Choices also announced the availability of exclusive content: a dementia provision for advance directives. According to a report released last month by the Alzheimer’s Association, Alzheimer’s deaths continue to rise — increasing 68 percent from 2000-2010. The new provision can be added to any advance directive or living will to advise physicians and family of the wishes of a patient with Alzheimer’s disease or other forms of dementia.

President Barbara Coombs Lee explained why the dementia provision is so important. “Most advance directives take effect only when a person is unable to make healthcare decisions and is either ‘permanently unconscious’ or ‘terminally ill,’” she said. “But what of the situation in which a person suffers from severe dementia but is neither unconscious nor dying? Without this provision in advance directives, families and doctors have no sure guide for the care of the estimated 450,000 people who will die this year with Alzheimer’s.”

Compassion & Choices has launched a social media campaign featuring bold graphics and the taglines “Ask me” and “Tell me” to prompt discussion of advance care planning, sharing the graphics from its Facebook page: facebook.com/CompassionandChoices.

Completing advance directives is the first step toward patients receiving the care they want – and only the care they want. Compassion & Choices is conducting a national campaign to stop unwanted medical treatment so that healthcare providers and institutions take all steps to honor patients’ wishes. The campaign petition can be found here: tinyurl.com/umt-petition

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.

How Do You Want It to End?

By Paula Span
The New York Times
August 17, 2012

Among the many things that Ellen Goodman has done — written a widely syndicated column, published books, won a Pulitzer Prize for commentary, given probably hundreds of talks on topics from friendship and feminism to bioethics — is this familiar job: She’s been a family caregiver.

She traces her latest mission, leading a new campaign called the Conversation Project, to her role as “designated daughter” for her mother, who died five years ago at age 92. “She had dementia and was no longer able to decide what she wanted for lunch, let alone medical decisions,” Ms. Goodman told me in an interview.

“My mom and I talked about everything, but we’d never had a conversation about what she wanted at the end of life that went any deeper than, ‘If I’m ever like that, pull the plug.’ Then there was a long decline,” Ms. Goodman said ruefully, “and no plug to pull.”

Some decisions seemed clear to her. When doctors, suspecting cancer, suggested a spinal tap, “the idea that they’d put her through a painful test in order to discover something she would not treat — that was nuts.” But when Ms. Goodman had to decide whether to authorize antibiotics to treat her mother’s pneumonia, she felt less certain.

“A couple of times I answered yes when I probably shouldn’t have,” she said. “I very much wished I had talked to her about it when she still could say what she wanted.”

The Conversation Project, whose Web site made its debut on Wednesday, aims to encourage such discussions. It grows out of meetings Ms. Goodman convened in Boston, starting in 2010, with medical experts, clergy and fellow media people. “It’s an attempt to get people’s end-of-life wishes expressed and respected — that’s the shorter-than-Twitter description,” she said.

Americans are perennially urged to have those talks and to codify the results in advance directives. There’s National Healthcare Decisions Day each April. And the Five Wishes effort, which dates to 1997. But all such efforts have proved largely unsuccessful.

Last year, a study in The Journal of the American Medical Association, involving 3,300 Medicare beneficiaries who died over nine years (mean age: 83), found that fewer than 40 percent had written a “treatment-limiting advance directive.” In a 2006 Pew Research Center survey of end-of-life attitudes, those with a “living will” had more than doubled since a similar 1990 report, but they still represented only 29 percent of respondents.

Perhaps that’s because most advocates never really explain how to go about these discussions. What, exactly, do you say? When’s the right time? “These are tender subjects,” Ms. Goodman said.

The starter kit on the Conversation Project Web site offers both reassuring hand-holding and concrete topics to tackle. It even suggests wording: “What do you feel are the three most important things that you want your friends, family and/or doctors to understand about your wishes for end-of-life care?”

The kit helps measure the intensity of people’s feelings. Where do you fall, on a five-point scale, between “I’m worried that I won’t get enough care” and “I’m worried that I’ll get overly aggressive care”? It also provides advance care planning forms with which to document an individual’s decisions.

ABC News has joined the Conversation Project and will broadcast a “World News Tonight” segment on end-of-life conversations next week.

“I do think we’ve hit a tipping point,” Ms. Goodman said, pointing out that the baby boomers now watching their parents age have been forces for change throughout their lives.

“This is a subject we’ve been slow to grapple with,” she said. “And I think people really are ready.”

National Healthcare Decisions Day: Amy’s Story

Compassion & Choices member Persis Oberreither, by completing an advance directive, inspired her teenage daughter to do the same. Here she tells of the heartbreak – and comfort – of honoring her daughter’s wishes.

AMY’S STORY

In recognition of National Healthcare Decisions Day, I want to share with you my first-hand knowledge of the incalculable importance of having an advance directive, and of discussing your feelings about end-of-life matters with the people you love and trust.

My eighteen-year-old daughter and only child, Amy, was involved in a car accident in 2001. She survived the accident but sustained a devastating brain injury. As she lay unconscious on full life support in the intensive care unit, her neurosurgeon informed me that Amy’s head injury was “…as bad as it gets.” Later, he added, “I’m flabbergasted she’s still alive.”

Amy remained unconscious for three weeks before her father and I requested that the machines supporting her life be disconnected. Our beloved daughter died two hours later.

In truth, it was Amy herself who made that request. She asked me six months before her accident what a living will was, now referred to as an advance directive for healthcare. Amy had found me sitting at our dining room table one afternoon, reviewing the living will that I’d drawn up for myself, the pages having been signed, witnessed and notarized at my attorney’s office earlier that day. When I explained to her that having a living will “lets you keep control over your own life should something terrible happen and you wind up in a coma in the hospital or something”; that having a living will “makes your life your decision and prevents (I phrased this in a way an eighteen-year-old could relate to) a bunch of ‘fundamentalist crusading yahoos’ from gaining control over you through the courts,” Amy then asked,

“Can I have one for myself?”

“Absolutely,” I said.

You never know.

It was understandable why having an advance directive that would ensure her dignity and quality of life up to the end had become of utmost importance to Amy. She had borne witness to the long, terrible suffering of her beloved grandmother: her dear friend –ravaged by Parkinson’s disease; her dear friend – no longer able to walk or talk or feed herself; her dear friend – no longer able to recognize the people she loved.

It was due to the love and compassion that she felt for her grandmother that Amy became the kid who got into trouble in religion class, senior year of high school, for expressing her support and approval of the efforts of Dr. Jack Kevorkian.

When I finally came to understand that the life Amy had so emphatically expressed to me she wanted and needed and deserved – a life of independence and self-determination, the life we all want and need and deserve – was forever out of her reach, I, as her durable power of attorney, turned over her advance directive to the hospital staff. I knew that Amy was counting on me to speak her mind for her. I did what she asked.

Honoring Amy’s wishes by allowing her to die was…is…well…hard beyond description by the spoken or written word. But as I struggle to endure my grief and loss, I have peace of mind in knowing that what I did for Amy was right.

I encourage you to do this loving thing for the people you love: Children, talk to your parents about their end-of-life wishes. Parents, talk to your children if they are eighteen or older about their end-of-life wishes. Fill out your advance directives as a family. Re-initiate the conversation every so often. Because Amy’s story could someday be your story.

You never know.

Persis Oberreither graduated from Miami University with a degree in philosophy, worked as a paramedic, and was a stay-at-home mom while Amy was growing up. After Amy’s death, Persis wrote PINKY-SWEAR: Honoring My Daughter’s Right to Die, and has worked as a hospice volunteer. She is a member of Compassion & Choices, Bereaved Parents of the USA, and St. Paul’s Lutheran Church. Her book can be ordered from pinkyswearamy.com/purchase/.

To obtain copies of your state-specific advance directives, and to learn ways of getting the conversation started, please go to compassionandchoices.org/G2G for information.