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MAGAZINE FALL 2014 Brittany Maynard’s B R AV E CAMPAIGN HOW-TO TIPS for Caretakers PLUS 2014 Annual Report Five Questions for Patrick Stewart Champions Circle monthly giving Fall 2014 program allows you to contribute contents Vol. 13 / No. 4 automatically each month, helping us plan our work more effectively. Signing up is simple, and you can make changes or cancel at any time. FEATURES Join our Champions Circle with the 06 Comes a Time envelope in this issue or online at Vicky York, dying of cancer, talks with C&C days before CompassionAndChoices.org/Donate using Oregon’s death-with-dignity law. 10 Nuts + Bolts of End-of-Life Care A hospice physician offers advice for at-home caretakers. Be a for Choice CHAMPION 15 18 Serving Up Straight Talk During the Holidays Holiday get-togethers lead to lively end-of-life discussions. 25 2014 Annual Report We look back on a year of remarkable progress 10 and growth. 06 JAN MAR DEPARTMENTS FEB 02 Inside View 25 03 Words & Pictures 04 Keeping Count 05 Words to Live (and Die) By It is important to me to 09 Rx for Peace at Life’s End “support organizations that Compassion & Choices is the nation’s oldest and largest champion a person’s right to 12 Five Questions for Patrick Stewart nonprofit organization working to improve care and expand die in a time and place of their choice at the end of life. We: 14 National Programs Update Support patients and families own choosing. Making automatic Educate the public and professionals Advocate across the nation monthly donations guarantees 20 Advocacy in Action Advancing death with dignity since 1980. Learn more at that this is accomplished.” CompassionAndChoices.org. 24 State Spotlight: California – Ilse Gay, New Mexico inside view words & pictures MAGAZINE Chief Editor In Your Sonja Aliesch Art Director “In every state across the country … I would very “Why, when 70 percent of us say we want to die Words Bhavna Kumar much like to see … an allowance for aid in dying.” at home, are we so often dying in the hospital? In America, we avoid these conversations,” responded Director of Communications That’s what NPR host Diane Rehm told NBCNews.com “Much unhappiness has come & Marketing Compassion & Choices’ National and Federal after she hosted a show discussing how her husband, into the world because of Gwen Fitzgerald Programs Director Daniel Wilson on PBS’ baby- John, voluntarily stopping eating and drinking bewilderment and things left Contributors boomer website, NextAvenue.org. (VSED) to end his suffering from Parkinson’s disease. unsaid,” wrote Dostoevsky. Barbara Coombs Lee Mickey MacIntyre The story cited C&C’s poll findings showing unwanted Indeed. When it comes to Jane Sanders Diane and NBCNews.com also interviewed Compas- medical treatment is widespread. The author’s solu- end-of-life experiences, we Sean Crowley sion & Choices President Barbara Coombs Lee, who Anne Singer tion? “Visit the Compassion & Choices website for know what grief the unsaid Patricia A. González-Portillo noted that if John had lived in Oregon he would resources on communicating your wishes, advance can cause. At Compassion & Jeanne Duncan have qualified for aid in dying. “He should have had planning, writing advance directives and getting Choices we do our part to prevent grief arising from the unknown Advertising, Rights & Permission a full range of choices,” she said. end-of-life consultations.” and unsaid. We reach out to more people than ever – to those of all Compassion & Choices ages, beliefs and backgrounds – urging them to discuss their values, PO Box 101810 Denver, CO 80250 priorities and what care they would want in their last days. 800.247.7421 (t) 303.639.1202 (t) 303.639.1224 (f) Starting these conversations is not really so difficult, and their CompassionAndChoices.org “My husband’s death was beautiful,” Compassion empowering impact ripples through families and communities. Vicky [email protected] & Choices volunteer Pam Wald told The [London] “People aren’t comfortable asserting their authority York (p. 6) learned the ins and outs of Oregon’s Death With Dignity This publication is a benefit for members Observer about her husband, Ben’s, peaceful passage unless you’ve talked to them and told them exactly Act when an elderly friend told her he wanted to exercise its option and donors of Compassion & Choices what you want from them,” explained President with our national office at: using Oregon’s death-with-dignity law. “My god, for a peaceful death. That knowledge eventually eased Vicky’s own 1001 Connecticut Avenue, NW, Suite 522 this is what dying should be for all of us.” Barbara Coombs Lee in a Kiplinger Retirement access to aid in dying. She hopes telling her story will make the Washington, D.C. 20036 Report story entitled, “Alzheimer’s Patients Can process easier for others to navigate. Our good friend Dr. David Postmaster: The British Parliament is considering an aid-in-dying Craft Care Plans.” Muller (p. 9) explains how the power and responsibility rests with Send address changes to: bill based on Oregon’s model. each of us. Giving voice to our expectations and demands, we can Compassion & Choices The author noted: “Compassion & Choices offers a PO Box 101810 “The [Oregon] law,” The Observer concluded “enjoys change the medical industry. This issue also includes our 2014 Denver, CO 80250 ‘dementia provision’ that can be added to a standard Annual Report (p. 25), an inspiring summary of C&C’s challenges, Bulk postage paid at Denver, CO, broad public support and has attracted little or no advance directive to make it clear that the patient and additional mailing offices. impact and victories over the past year. controversy despite vocal initial opposition from the wishes the living will to take effect when dementia In the normal course of business, Compassion Catholic Church and other religious groups.” & Choices regularly exchanges mailing lists reaches a certain point … The document is available Let’s all keep talking about these crucial issues of dignity and control with other like-minded organizations. If you at CompassionAndChoices.org.” would like to have your name removed from in the process of dying. Time and again, I’ve seen heartfelt conver- these exchanges, please notify us in writing, VIDEOS Watch & Share! sation ease the terrible darkness that grows in silence. Bring up your including your name and address. We will end-of-life values with family, friends, doctors and neighbors in the honor your wish upon receipt of your request. coming months. I predict one year from now we’ll look back to see Photo Credits many positive echoes of our brave words. cover: Nigel Parry/CPi Syndication p.1, 2, 6-8: Owen Carey p.1, 15: courtesy of Brittany Maynard p.12: Nino Munoz/CPi Syndication p.13: CBS photo archive/Getty Images p.17: Amanda Voisard Barbara Coombs Lee p.14: Chris Williams/Zoeica Images p.28: courtesy of Rebecca Moss PA, FNP, JD, President C&C Celebrates ADA Anniversary Anita Freeman Speaks Out The Brittany Maynard Fund p.28: courtesy of House Democrats of CT View at: www.bit.ly/24ada View at: CompassionAndChoices.org/Anita View at: TheBrittanyFund.org p.28: courtesy of MD Governor’s Office 2 COMPASSION & CHOICES MAGAZINE / FALL 2014 CompassionAndChoices.org 3 keeping count words to live (and die) by PALLIATIVE CARE: “take political action to Treatment focused on relieving pain and other discomfort, not to protectPatient’s patients’ rightsHealthcare providers regularly ignore end-of-life preferences 66% reverse or control the disease. say they would to their own choice in end-of-life carore. give” people insufficient information to make medical decisions. Among Americans age 50 and older: The goal is to improve Orders quality of life for both the patient and the family. ADVANCED ILLNESS: One or more ailments $ so severe that overall health “take political action to deteriorates; decline is irreversible even with 65% 61% protect patients’ rights medical treatments. LIFE- support withholding payment to support66% SUSTAINING say theyreimbursing would doctors to their own choice in end-of-life care.” healthcare providers who fail to for end-of-life consultations. MEASURES: honor their end-of-life medical wishes. Any treatment that, if discontinued, would result in death. This includes technological interventions such as dialysis and ventilators, and also WITHHOLDING/ therapies like insulin, steroid $ medication and antibiotics WITHDRAWING in some situations. TREATMENT: 65% 61% To omit or cease life-sustaining support withholding payment to support reimbursing doctors measures or medication that, if used, healthcare providers who fail to for end-of-life consultations. would probably prolong a person’s life. This legal act may follow a honor their end-of-life medical wishes. patient’s request, an advance directive or determination “take political action to of medical futility. 66% protect patients’ rights say they would to their own choice in end-of-life care.” “take political action to 66% protect patients’ rights say they would to their own choice in end-of-life care.” $ Source: 2014 Purple Insights 65% 61%poll of Americans over age 50. support withholding payment to support 4 COMPASSION & CHOICES$ MAGAZINE / FALL 2014 reimbursing doctors CompassionAndChoices.org 5 healthcare providers who fail to for end-of-life consultations. honor65% their end-of-life medical wishes. 61% support withholding payment to support reimbursing doctors healthcare providers who fail to for end-of-life consultations. honor their end-of-life medical wishes. “My ending, because of the law, will be gentle and not the train wreck that so many families have to deal with.” Vicky York with her son, Rick Comes a Time Compassion & Choices’ End-of-Life Consultation (EOLC) service offers information about various options to achieve a peaceful death.