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Tag Archive: Aid in Dying

  1. Terminal Ariz. Woman Calls for Medical Aid in Dying Laws in New Video

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    Terry Goldberg Recorded Video Only Days Before her Death

    To honor the first anniversary of Terry Goldberg’s death, Compassion & Choices is posting a video Terry recorded in which she and her family urge state lawmakers nationwide to authorize medical aid in dying as an option for terminally ill adults.

    Terry suffered from multiple system atrophy (MSA), a rare, rapidly progressing, terminal, neurodegenerative disease that takes away the ability to walk, talk, swallow and breathe. Terry was diagnosed with MSA in May of 2014.

    “I would choke and not be able to get my breath; it was really frightening,” Terry says in the video, which is posted below. “The most significant thing to me is it interferes with the normal interaction that I have with my family and my grandchildren. And when the grandkids come over and everybody is on the floor reading a book and playing a game, in my mind, I think I can do that too. But in reality, it’s not going to happen.”

    Terry knew that her death was imminent and she wanted to die peacefully at home with her family, not in a hospital room tethered to machines. Medical aid in dying gives terminally ill adults the option to request a doctor’s prescription for medication they can self-ingest to gently die in their sleep, at home and end unbearable suffering in the last months, weeks or days of life.

    Unfortunately, Terry’s home state of Arizona does not authorize medical aid in dying. As a result, she chose to voluntarily stop eating and drinking (VSED) with palliative support to shorten her dying process.

    “I would never, ever leave this earth unless I was in a situation like I am,” Terry says in the video. “But it’s taking me only one direction, and such a frustrating, painful, continuous ordeal. That is a deal breaker for me.”

    Terry’s family supported her decision to voluntarily stop eating and drinking with palliative support so she could end her unbearable suffering, even though the process took a few days.

    “If you were diagnosed with a disease and told that, I mean, it was a terminal illness, where you knew that every day was going to be worse than the day before, and that most likely you would die from choking, how can you judge someone for wanting to die peacefully instead of a violent horrible death?” says Terry’s daughter, Lauren Cain, in the video.

    “I can’t believe that there is any justification to go through this kind of pain, knowing the final result, and not being able to have some kind of control,” says Terry’s husband, Lance Goldberg, in the video. “So ending one’s life as a choice versus suffering I think is right in tune with our beliefs.”

    A longtime kindergarten teacher, Terry wanted her last lesson to be teaching others about her end-of-life experience. Terry bravely declined her pain and other medications so she could be conscious and coherent before she recorded the video only a few days before she died. People with MSA often die from respiratory problems.

    “And when I asked to have some control, and it was granted to be that way, and made a huge difference immediately in my psychological comfort, still never knowing or thinking I would do this act,” Terry says in the video. “But it just gave me the opportunity to know that I had an out before I was frightened into such a fear factor.”

    Terry died on Feb. 19, 2015, at home surrounded by her family, as she wished. But Terry could have died more peacefully had she had the benefit of medical aid in dying.

    “And if we knew that she had that option to be able to be guided through that process, it would have given us so much more peace,” says Terry’s other daughter, Leigh Suskin, in the video.

    The full transcript of this video is available here.

  2. Supreme Court Case Ruling Could Impair End-of-Life Care for Millions

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    (Washington, DC – Feb. 17, 2016) A U.S. Supreme Court case claiming the Affordable Care Act’s contraceptive coverage insurance requirement violates religious freedom could impair end-of-life care for millions of Americans, asserts a friend-of-court brief filed today.

    “A similar argument could be made by a healthcare provider who morally objects to a medically sound healthcare decision by a patient or surrogate, or to a provision in an advance directive such as a do-not-resuscitate order or a prohibition against the use of a ventilator or feeding tube. Such an argument would upend statutory mandates in 47 states requiring the objecting provider to cooperate in the patient’s transfer to someone who will comply with the decision or directive,” said the amicus curiae brief filed in Zubik v. Burwell by Jon B. Eisenberg, counsel of record with Horvitz & Levy LLP, and Kevin Díaz, national director of legal advocacy for Compassion & Choices, an end-of-life care advocacy organization.

    The federal Patient Self Determination Act bolsters these statutory mandates by requiring healthcare providers who receive Medicare or Medicaid funds to “ensure compliance with requirements of State law (whether statutory or as recognized by the courts of the State) respecting advance directives at facilities of the provider or organization.”

    “If this Court were to embrace petitioners’ position as they articulate it….statutory mandates for transfer would become toothless and the constitutional right to refuse unwanted medical treatment would be impaired,” the brief argues. “This adverse impact on constitutionally guaranteed choice in healthcare is undeniable, given the enormous contribution of Catholic hospitals to the provision of healthcare in America.”

    As of January 2016, 639 Catholic hospitals nationwide — 34% of which were located in rural areas — accounted for 5 million yearly hospital admissions and 20 million yearly emergency room visits, according to the Catholic Health Association of the United States. Catholic hospitals in rural areas are commonly “sole community providers,” meaning no nearby hospitals provide similar services.

    “A substantial number of Americans, many of whom are not Catholic, are treated at Catholic hospitals not by choice but by circumstance — for example, because no similar facility is nearby or because a medical emergency has rendered the patient unconscious and unable to choose among available hospitals,” the brief concludes. “Issues of conscience will inevitably arise in situations where patients’ healthcare decisions and advance directives are at odds with the Ethical and Religious Directives for Catholic Health Care Services (ERDs) to which Catholic hospitals adhere.”

    For example, advance directives commonly provide for refusal of artificial nutrition and hydration, but Directive Number 58 of the ERDs imposes on Catholic hospitals an obligation to provide “medically assisted nutrition and hydration for those who cannot take food orally,” which “extends to patients in chronic and presumably irreversible conditions (e.g., the ‘persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care.”

    The full brief is posted here.

  3. Colorado Aid-in-Dying Bill Advances

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    Our Colorado team continues to make encouraging progress: Following 11 hours of compelling testimony for the Colorado End of Life Options Act at the state Capitol last week, members of the House Judiciary Committee voted six to five in favor of the bill, allowing the legislation to move to the House floor.

    “The campaign to give terminally ill Coloradans the option of medical aid in dying had a real victory today,” said Compassion & Choices Cultivation Manager Roland Halpern after the hearing. “We applaud members of the House Judiciary Committee who listened to their constituents and agreed that people facing unbearable suffering at the end of life should have more options and more control over how they spend their final days and weeks. (more…)

  4. C&C Advocate Speaks at Cato Institute Policy Forum

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    Barbara Mancini, a Pennsylvania nurse and Compassion & Choices volunteer, spoke at the Cato Institute policy forum “What Are the Rights of the Dying?” last month before a packed room  despite a historic blizzard that shut down Washington, D.C., days earlier. 

    Mancini’s story is as powerful as it is horrifying. She was arrested and charged with aiding the “attempted suicide” of her 93-year-old terminally ill father — who she had been helping provide home hospice care for — by handing him his prescription morphine, which he consumed. Despite his advance directive and DNR, he was resuscitated, ultimately dying in the hospital four days later. After a yearlong legal battle, the charges against Mancini were dropped, and she has worked with C&C ever since.  (more…)

  5. End-of-Life Options Advocate Christy O’Donnell Dies Before Law She Championed Takes Effect

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    (Los Angeles – Feb. 8, 2016) Christy O’Donnell, whose horrific suffering from cancer prompted her to publicly support legislation to give other terminally ill Californians the option of medical aid in dying, has died. She was 47.

    Christy’s older brother, Jay Watts, confirmed she died on her Facebook page.

    “On February 6, my little Sister Christy passed away and she asked me to post this as her final message on Facebook, as she wanted everyone to know how Loved, Supported, and Lucky she has been in her Lifetime to have you all in her Life. I and our family want to extend a special thanks to the health care professionals at http://www.bestchoicehospicecare.com/ who were absolutely wonderful in doing what they could to help make Christy’s final days as comfortable as possible given the circumstances.”

    “To Bailey, my Beautiful Daughter: … I have done everything I can think of to prepare you for this moment and I pray that it has been enough to lessen your suffering after Mommy is gone. I also pray that all of Mommy’s friends and family will be there for you in the future and they have set up a Trust for you at www.crowdrise.com/odonnellfund to do what I could not be there to do, get you through College in our own home with our poopies ‘Lady’ and ‘Pup Pup’. …I take comfort in knowing that someday Aid in Dying will be lawful not only in California, but throughout the United States.”

    Christy bravely fought for the recent enactment of California’s aid-in-dying law, the End of Life Option Act, despite knowing she would likely die before it would take effect: 90 days after the end of the legislative special session concludes later this year.

    “Christy worked tirelessly for the passage of the End of Life Option Act,” said Compassion & Choices California Campaign Director Toni Broaddus. “Our hearts are breaking at the loss of this amazing woman who did so much for others even as she was facing her own death. It’s a tragedy Christy could not take advantage of the new law she so bravely fought for during the last months of her life. We have so much gratitude for Christy and her work.”

    Between agonizing, debilitating cancer treatments, Christy traveled from her Santa Clarita home to Sacramento to testify in support of the End of Life Option Act, told her story to journalists, met with lawmakers, rallied at their offices urging them to support the bill and videotaped a personal plea for Gov. Jerry Brown to sign it.

    When Brown signed the bill on Oct. 5, she unselfishly spoke of the other beneficiaries:

    “I’m overjoyed for all the terminally ill in California, who can now relax knowing they finally have the choice of aid in dying as one of their end-of-life options’” she said. “Gov. Brown, you have made me a proud Californian today, knowing I live in a state where our governor acts in accordance with what his people need, want, and deserve: in this case, a peaceful and pain-free death with their family.”

     

    A single mom, devout Christian, lifelong Republican and LAPD officer turned civil rights lawyer, Christy had a unique story that resonated with the media and the public.

    She was featured in a People Magazine article: “Why Can’t I Die on My Own Terms?” And she wrote an op-ed published by the Los Angeles Daily News: “Deprived of the choice to die with dignity.” Dozens of media outlets covered her story, including: The Huffington PostThe [London] Daily MailThe Washington Post, and Yahoo News. To learn more about Christy’s courageous battle to pass the End of Life Option Act, watch this video: bit.ly/ChristyO.

    Christy was diagnosed with stage IV lung cancer in 2014. Despite enduring a year of chemo treatments, the cancer spread to her brain, liver, spine and a rib. Her doctors said she would likely die painfully within months from the rapidly growing cancer.

    Despite this prognosis, she tirelessly advocated for passing the End of Life Option Act and was the lead plaintiff in a suit filed by Compassion & Choices asserting existing California law and the state constitution already authorize medical aid in dying.

    “I can’t wait,” she told People Magazine. “My daughter can’t wait. I owe this to myself, and I owe this to my daughter. She’s either going to come home and she’s going to have to discover my body, or she’s going to have to watch me die painfully.”

    Dan Diaz, the widower of Brittany Maynard, the 29-year-old Californian with terminal brain cancer who moved to Oregon to access its death-with-dignity law in 2014, fought back tears as he spoke about his friend Christy.

    “The first time I ever spoke with Christy she briefly shared with me the details of the cancer she was battling, but the focus of the conversation quickly shifted to how proud she felt of her daughter, Bailey,” Dan Diaz said. “Christy’s determination to live life as long as possible, and her advocacy for end-of-life options, emanated from her love of Bailey. Christy’s devotion to always do right by her Bailey is how I will remember my dear friend.”

    Christy was born on July 24, 1968. She was a partner at the law firm of McCune & Harber in Los Angeles and was also a guest lecturer at University of Southern California. She is survived by her 21-year-old daughter, Bailey Donorovich.

  6. Supporters Celebrate Progress of Aid in Dying Legislation for Terminally Ill Coloradans

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    (Denver, Colorado – Feb 4, 2016) Despite the Colorado Senate’s inaction on the Colorado End of Life Options Act yesterday, advocates for the legislation are celebrating today as their bill moves to the House Floor.

    “The campaign to give terminally ill Coloradans the option of medical aid in dying had a real victory today,” said Compassion & Choices Cultivation Manager Roland Halpern. “We applaud members of the House Judiciary Committee who listened to their constituents and agreed that people facing unbearable suffering at the end of life should have more options and more control over how they spend their final days and weeks. Where Senators tried to shut down debate yesterday, the House chose to trust Coloradans to have a serious conversation about the end of life.”

    On Wednesday, SB16-025, the End of Life Options Act fell victim to partisan politics in the Colorado Senate Judiciary Committee; on Thursday, members of the House Judiciary committee voted six to five in favor of the bill, allowing the legislation to move to the House floor.

    The Colorado End of Life Options Act is closely modeled after the Death With Dignity Act in Oregon, which has worked well for 17 years, without a single documented case of abuse or coercion. California recently became the 5th state to authorize the option of medical aid in dying and the 2nd state after Vermont in 2013 to do it via the legislature. The other three states that authorize this end-of-life option are Oregon (via referendum in 1994), Washington (via referendum in 2008) and Montana (via state Supreme Court decision in 2009). More than half the states have considered similar legislation in the past year.

    Coloradans from across the state came to the Capitol on Thursday to testify in support of The Colorado End of Life Options Act, which would allow mentally capable, terminally ill adults the option to request a doctor’s prescription for medication that they could take, if their suffering becomes unbearable, to painlessly and peacefully die in their sleep.

    Patti James, a 79 year-old nurse from Littleton who also has terminal cancer, testified at the House hearing and later expressed her gratitude: “I am a nurse who has seen too many difficult, painful deaths. I am also a woman with stage 3 lung cancer, which means a cruel and terrifying dying process is in my future. I want to thank the committee for truly hearing what we had to say and moving this legislation to the next step. I may not ultimately be able to access this compassionate option, but I hope other dying Coloradans can one day.”

    Many Coloradans went to difficult lengths to get to the Capitol and have their voices heard. Joellyn Duesberry is a 71 year-old from Greenwood Village. She explained, “I have forfeited my privacy in order to be robustly vulnerable before all of you gathered here [because I] want my dying to be of some service to humanity.”

    Dr. Lauri Costello, a family doctor from Durango, made it clear to members on the committee why she is confident supporting the Colorado End of Life Options Act: “The term ‘physician assisted suicide’ is, frankly, deeply offensive to me as a physician and to many of my physician colleagues.  This term does not refer to any legal medical procedure, and insinuates that physicians help their patients commit suicide.  Suicide and euthanasia are both illegal in all 50 States and will remain so.  Neither is remotely related to medical aid in dying, which this bill addresses.”

    Dan Diaz, who was in Colorado last week, had his testimony read aloud to the House committee and provided video testimony given by his late wife, Brittany Maynard. Maynard had terminal brain cancer and moved from California to Oregon in 2014 to access that state’s Death with Dignity Act. Diaz testified, “As a Catholic, I believe it is not for me to judge someone else’s decision regarding their own end of life.  I respect those who might make a different decision if they were in Brittany’s shoes, so I don’t understand why they do not extend the same respect to those of us, and the 68% of Coloradans, that agree with Brittany and support End-of-Life Options for terminally ill individuals.”

  7. Presidential Campaign Forum Raises End-of-Life Options Issue

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    (Portland, OR – Feb. 4, 2016) In response to a unique question about end-of-life care options raised during a CNN presidential town hall last night by terminally ill supporter Jim Kinhan, Compassion & Choices Action Network announced today it will host a teleconference on the issue before the Nevada caucus. The teleconference will take place on Feb. 16 at 8 p.m. EST/5pm PST, at a location still to be determined.

    Below is a partial transcript of the presidential town hall exchange between Hillary Clinton and Jim Kinhan, an 81-year-old supporter of Compassion & Choices Action Network dying from colon cancer, who wrote an op-ed about it published in the Concord Monitor.

    KINHAN: “… I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance their end of life with dignity.”

    HILLARY CLINTON: “… this is the first time I’ve been asked that question … And I thank you for it, because we need to have a conversation in our country … So it is a crucial issue that people deserve to understand from their own ethical, religious, faith-based perspective … I want, as president, to try to catalyze that debate because I believe you’re right, this is going to become an issue more and more.”

    “Options for end-of-life care are a big deal for millions of older Americans like Jim Kinhan and their baby boomer caregivers,” said Compassion & Choices Action Network President Barbara Coombs Lee, who was an ER and ICU nurse and physician assistant for 25 years. “Virtually every national and state poll shows voters from all political persuasions and demographic groups want autonomy to choose from the full range of end-of-life care options, including hospice, palliative care and medical aid in dying.”

    “Most people want to die at home and avoid futile, painful, unwanted medical treatments that only extend their dying process and destroy their quality of life,” added Coombs Lee. “We are hosting this teleconference so journalists, politicians and voters unfamiliar with end-of-life care options can learn about and discuss this issue.”

  8. Inside Scoop: Let the Candidates Know Where you Stand

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    By Mark Dann

    Hillary? Ted? Bernie? Or the Donald?

    As we all know, the 2016 race for the White House is underway. And we have a perfect opportunity to talk with the presidential campaigns about what is important to you.

    As a member of the Leadership Council of Aging Organizations (LCAO) – a 72-member coalition of the nation’s leading non-profit organizations that serve older Americans – Compassion & Choices will sponsor Seniors Decide 2016, the nation’s only forum where all of the presidential candidates are invited to address issues that are important to America’s older adults.

    We want you to participate. Head to the Seniors Decide website to ask the candidates about their view on end of life issues. Before we head into the voting booth, the candidates need to tell us how they plan on increasing care and choice at the end of life, whether they support hospice care for people who are still trying to cure their ailments, and what they’ll do to stop unwanted medical treatment. 

    The event will be held on Wednesday, February 17 at 2:30 pm ET in Washington DC, and will be live-streamed nationwide.

    The forum will take place right before Super Tuesday, when 12 states will hold their presidential primaries or caucuses.Let the candidates know that you’ll be watching by sending them a question at SeniorsDecide.org.

    Seniors Decide will post a list of questions to show the candidates what Americans nationwide are concerned about. Let’s make sure end-of-life care is represented.

    This is going to be an exciting election year and we need to hear your voice!

  9. End-of-Life Care: Are We Ready for Real Reform

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    By Kim Callinan, Chief Program Officer

    Over the past several decades, our unprecedented medical advances have outpaced our progress in ensuring that people with advanced illnesses have the comfort and quality of life they deserve as they near the end of their lives. Most people who indicate their end-of-life care preferences choose to focus on alleviating pain and suffering, but the default mode of hospital treatment is acute care, concludes a September 2014 Institute of Medicine (IOM) report entitled Dying in America. Why has this unacceptable situation happened?

    As a society, we have always shied away from talking about death — despite the fact that it is an eventual outcome for all of us. Only one of every six adults (17%) actually have talked with their doctor or healthcare provider about their end-of-life priorities and values, according to a September 2015 Kaiser Family Foundation Survey.

    Unfortunately, most doctors aren’t any more prepared to have these conversations than are their patients. Most physicians don’t go into medical school to help people have a better death. Even if they did, most medical school curriculums don’t adequately teach doctors how to address end-of-life care. As best-selling author Dr. Atul Gawande so eloquently wrote in his book, Being Mortal, “doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering.”

    What’s important to understand is that the American public’s sharply increased interest in end-of-life choice and care is not just about the passage of medical aid-in-dying legislation in our nation’s largest and most diverse state, California — it’s about a movement to demand choice and a cry for better options and improved care in our end-of-life health care system. To make this goal a reality, Compassion & Choices put together a federal policy agenda that is based on the IOM’s Dying in America report outlining the systemic crisis in end-of-life care. Think of the IOM report as the diagnoses of the problem and Compassion & Choices’ federal policy agenda as the treatment. Our agenda covers a range of issues from hospice and palliative care, to changing perverse payment structures that rewardunwanted medical treatment, to professional education of health care providers about end-of-life issues.

    If you are interested in learning more, please join my colleague, Dr. David Grube, national medical director at Compassion & Choices; Brian Lindberg, executive director, Consumer Coalition for Quality Health Care; and me at theAmerican Society on Aging’s annual conference. Our session, “Come to Patient Centered Care: Translating Patients’ Wishes Into Federal and State Policy,” is on March 21 at 9:00am. If you have not yet registered, you can get a $50 discount to attend the conference by entering the promotion code PRSNTR50 when you register. We hope to see you there!

    This blog was originally published by the American Society on Aging. Click  here to read it on the ASA website.

  10. Diane Rehm Pledges in New Book to Advocate for Medical Aid in Dying

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    By Sean Crowley
    The Washington Post today published the first interview with syndicated radio show host Diane Rehm about her new book, On My Own, which goes on sale Feb. 2. The book chronicles her late husband, John Rehm’s, prolonged death from Parkinson’s disease in June 2014 and her grieving process since then.

    In the book, Diane pledges after she retires on Dec. 31 to work with Compassion & Choices to help pass laws that authorize terminally ill adults facing unbearable suffering to request medication they can self-ingest to die more gently.

    Unfortunately, medical aid in dying is not an authorized end-of-life option in Maryland, where John spent the last two years of his life in a nursing home.

    As a result, he decided to voluntarily stop eating and drinking (VSED), a medical practice that is authorized in every jurisdiction nationwide. While this option enables some people to die peacefully, Diane says it took 10 agonizing days before John finally died utilizing VSED.

    Below is an excerpt of the Washington Post story titled: “Diane Rehm’s next act: Using her famed voice to fight for the good death.”

    “‘I rage at a system that would not allow John to be helped toward his own death,’ Rehm writes of watching her spouse of 54 years wither away …”

    Below are a few select quotes from On My Own.

    p.7

    “Why should it be that only a few states allow aid in dying with help from a trained physician willing to offer the ultimate gift?”

    p. 90

    “ … when I am no longer employed as a broadcaster … I will definitely want to contribute in some ways to Compassion & Choices, a national organization working to give people the right to choose to die with medical assistance. I so strongly believe in our right to choose when we die, if our illness is beyond any hope of bringing back a fullness of health. I know and respect those who argue that suffering is a part of living, but I do not agree and will do my best to speak out. I myself don’t want to suffer, nor do I want my family to see me suffer. When I believe the time has come for me to say farewell to this beautiful world, I will do so.”

    p. 142-143

    “Each and every one of us should have the right to choose … Let each of us make our own decision … “

    “The individual might or might not choose to take the medication, but—as has been said many times by Barbara Coombs Lee, president of Compassion & Choices, which lobbied for the groundbreaking law in Oregon—having that medication in hand provides a sense of comfort and control over one’s own life.”

    To read the Washington Post story, click here.