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Tag Archive: Aid in Dying

  1. Delaware Residents Urge State Legislators to Pass End of Life Options Act

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    Compassion & Choices and its Delaware supporters today met with Delaware legislators at the state Capitol today to urge them to authorize the end-of-life care option of medical aid in dying. Medical aid in dying gives mentally capable, terminally ill individuals with a prognosis of six months or less to live the option to request, obtain and self-ingest medication to die peacefully in their sleep if their suffering becomes unbearable.

    The bill, the End-of-Life Options Act (HB 160), is authored by Rep. Paul Baumbach (23rd district) and three co-sponsors, Rep. Bryon Short (7th district), Sen. David Sokola (8th district) and Sen. Margaret Henry (2nd district). The legislation passed out of the House Health and Human Development Committee by an 8 – 6 vote on June 7. The Committee vote to advance the bill clears the way for the full Delaware House of Representatives to consider it.

    “What brought me here today is my desire to make a difference with the limited time I have left,” stated Wilmington resident, Tom LaFollette, who is living with Kaposi’s sarcoma, a terminal, opportunistic infection from HIV/AIDS. “I wanted to let my legislators know that for terminally ill, mentally capable residents of Delaware, this issue is not a matter of ‘policy;’ it is ‘personal.’”

    “If our lawmakers don’t act to support this bill now, next year might be too late for me, as well as the countless others who await this decision,” added LaFollette. “The End of Life Options Act will provide great comfort to many people whose sole wish is to have more options at end of life.”

    “While we recognize it can be difficult to talk about death and dying, it’s critically important to help lawmakers understand the real stories of real Delawareans and address concerns they may have,” said Tim Appleton, multi-state campaign and outreach manager at Compassion & Choices. “Lawmakers should understand the very real human cost of legislative inaction on the Delaware End of Life Options Act. Many of our advocates will not be able to come back next year. For them, next year will be too late.”

    “As a spiritual leader and church pastor, it is my belief that when suffering and incapacity induced by terminal illness overwhelm our ability to bear it, a compassionate
    alternative must be available to us. That is why I support medical aid in dying,” said the Rev. Cynthia Robinson, pastor of the New Ark United Church of Christ in Newark, DE. “Dying must be embraced as a natural part of life and we must promote understanding and acceptance of diverse spiritual beliefs related to end-of-life decisions.”

    If HB 160 is enacted into law, it would make Delaware the eighth jurisdiction in the nation to authorize medical aid in dying as an end-of-life care option. Oregon, where medical aid in dying has been authorized for two decades, has been joined since then by Washington, Montana, Vermont, California, Colorado and Washington, DC.

  2. A Tribute to U.K. Medical Aid-in-Dying Pioneer, Lord Joel Joffe

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    Compassion & Choices is mourning the loss of Joel Joffe, one of the heroes of our worldwide movement and a giant of social justice. One of the greatest honors of my life is that this man — brilliant, kind and courageous in the defense of human rights — became my friend. We understood each other, and I felt humbled to know that in some measure, he returned the enormous admiration I held for him.

    Lord Joel Joffe was South African, but I met him in London in 2004, when he brought a bill to the House of Lords to authorize medical aid in dying (known as “assisted dying” in the U.K.). His bill never advanced, so when he died at age 85 on Sunday, June 18, his goal to help the terminally was still unmet.

    Joel died peacefully at his beloved home in Liddington, a village in Wiltshire, England, with his wife, Vanetta, and his daughters, Deb, Lisa and Abi, beside him. He died shortly after sending a message of affection and gratitude to his family, friends and colleagues.

    As a young lawyer Joel represented Nelson Mandela and eight others prosecuted in 1963 for actions to overturn the apartheid system of institutionalized racial segregation and discrimination. Writing at the end of the trial, these men called him “the general behind the scenes of our defense.”

    Much better than words from me, these words written in 1964 by Mandela and others from the Pretoria prison convey Joel’s extraordinary character:

    “When our trial started in October 1963, none of us had ever met Joel Joffe before. All we knew of him at the time was that he had cancelled plans to leave South Africa in order to take up our defense. This alone, at a time when frenzied hysteria was being whipped up against us amongst the White population of this country, assured us that he was a man of rare courage and real devotion to the cause of justice …

    We have come to admire and respect this quiet, courageous man, whose devotion to the cause of justice has been shown to be in the very highest tradition of his calling. We will be sorry indeed to end our close relationship with him. But we know that, wherever he is, wherever he may go, Joel’s legal brain and service will be at the call of those in need of justice and defense as it has been so fully and well at ours.”

    In those days of great reckoning, Joel set his moral compass. I will always believe there can be no surer test of the basic human decency of authorized medical aid in dying than that Lord Joel Joffe, champion of human rights, set his course toward this compassionate medical option. I am confident Joel’s vision of kinder, more merciful law will come into being in the United Kingdom. When it does, it will be thanks to Joel’s early, passionate advocacy to educate people about this end-of-life option to end unbearable suffering peacefully, when no other palliative care treatment provides relief.

  3. Corte de California permite que Demanda para Revocar Ley de Ayuda Médica para Morir vaya a Juicio

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    Kevin Díaz, director nacional de defensa legal de Compassion & Choices y John C. Kappos, socio del bufete O’Melveny que representa a Compassion & Choices durante una rueda de prensa afuera del Tribunal Superior de Riverside.

    Una corte superior de California dictaminó hoy que una demanda para revocar la ley de California, ‘Opción de Fin de Vida’ sea llevada a juicio para determinar los méritos del caso (véase Ahn vs. Hestrin – Caso RIC1607135). Por ahora, la ley de un año ‘Opción de Fin de Vida’, sigue vigente porque el tribunal rechazó previamente las peticiones de los demandantes con una orden de restricción temporal y una orden preliminar.

    La ley permite a los adultos mentalmente competentes, con una enfermedad terminal y seis meses o menos de vida, la opción de solicitar y obtener una receta médica para un medicamento que pueden tomar por sí mismos y morir pacíficamente en su sueño, cuando ningún otro tratamiento de cuidados paliativos alivie su sufrimiento insoportable.

    Los demandantes – Life Legal Defense Foundation, American Academy of Medical Ethics y varios médicos – presentaron la demanda contra el Procurador General de California y el Abogado de Distrito del Condado de Riverside  un día antes de que la ley Opción de Fin de Vida entrara en vigor el 9 de junio de 2016.

    La demanda alega que la ley viola el debido proceso y las garantías de igual protección de las constituciones estadounidenses y californianas porque falla en “hacer distinciones racionales” entre adultos en fase terminal y la gran mayoría de los californianos que no están cubiertos por la ley”. Además, la ley no tiene la autoridad legal para ser aprobada durante un período extraordinario de sesiones en cuidados de salud.

    El pasado mes de julio, el tribunal aceptó un escrito de amparo instándole a denegar la petición de los demandantes de una orden judicial preliminar, presentada por el bufete de abogados O’Melveny a nombre de Compassion & Choices, una organización nacional que promueve las opciones al fin de vida y que abogó con éxito la aprobación de la ley. El escrito afirmó que si la ley Opción de Fin de Vida fuera anulada, los californianos en estado terminal “se verán obligados a vivir por dolorosas y prolongadas muertes”.

    “Estamos decepcionados por el fallo de la corte hoy, pero estamos tranquilos de que la ley siga vigente por ahora, porque la abrumadora mayoría de los californianos a través del espectro político y religioso apoyan esta opción de fin de vida”, dijo John C. Kappos, un socio del bufete O’Melveny que representa a Compassion & Choices. “En última instancia, estamos seguros de que el tribunal decidirá que la legislatura aprobó debidamente la ley Opción de Fin de Vida y que es una ley perfectamente válida”.

    A principios de este mes, Compassion & Choices publicó un informe que muestra que por lo menos 504 californianos han recibido recetas de asistencia médica para morir durante el último año.

    “La revocación de la ley Opción de Fin de Vida tendría consecuencias devastadoras para los californianos en fase terminal y sus familias”, dijo Kevin Díaz, director nacional de defensa legal de Compassion & Choices. “Aunque respetamos la oposición personal de los demandantes a la ley, no tienen que participar en ella. Ciertamente no deberían ser capaces de quitar la capacidad de otros médicos para ofrecer esta opción a los pacientes moribundos de poner fin pacíficamente a su sufrimiento”.

    California es uno de los seis estados – incluyendo Colorado, Montana, Oregon, Vermont y Washington -, así como el Distrito de Columbia, que han autorizado la asistencia médica para morir. Colectivamente, estas siete jurisdicciones representan casi uno de cada cinco estadounidenses (18%).

  4. California Court Allows Suit to Overturn Medical Aid-in-Dying Law to Go to Trial

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    Compassion & Choices National Director of Legal Advocacy Kevin Díaz and outside counsel John Kappos at news conference outside Riverside Superior Court.

    A California superior court today ruled that a lawsuit to overturn the California End of Life Option Act will proceed to trial to determine the merits of the case (see Ahn vs. HestrinCase RIC1607135). For now, the one-year-old End of Life Option Act remains in effect because the court previously rejected the plaintiffs’ motions for a temporary restraining order and preliminary injunction.

    The law gives mentally capable, terminally ill adults with six months or fewer to live the option to request and obtain a doctor’s prescription for medication they can decide to take to die peacefully in their sleep when no other palliative care treatment relieves their unbearable suffering.

    The plaintiffs — Life Legal Defense Foundation, American Academy of Medical Ethics and several physicians — filed the lawsuit against the California Attorney General and Riverside County District Attorney the day before the End of Life Option Act took effect on June 9, 2016. The lawsuit claims the law violates the due process and equal protection guarantees of the U.S. and California constitutions because it fails “to make rational distinctions” between terminally ill adults “and the vast majority of Californians not covered by the Act.” The suit also claims the legislature did not have the legal authority to pass the law during a special session on health care.

    Last July, the court accepted a friend-of-the-court brief urging it to deny the plaintiffs’ motion for a preliminary injunction filed by the O’Melveny law firm on behalf of Compassion & Choices, a national organization promoting end-of-life choice that successfully advocated for the legislature to pass the law. The brief asserted that if the End of Life Option Act was overturned, terminally ill Californians “will be forced to live through painful and prolonged deaths.”

    “We are disappointed in the court’s ruling today, but we are relieved the law remains in effect for now because the overwhelming majority of Californians across the political and religious spectrum support this end-of-life option,” said John C. Kappos, a partner in the O’Melveny law firm representing Compassion & Choices. “Ultimately, we are confident the court will rule the legislature duly passed the End of Life Option Act and it is a perfectly valid law.”

    Earlier this month, Compassion & Choices released a report showing that at least 504 Californians have received prescriptions for medical aid in dying over the last year.

    “Overturning the End of Life Option Act would have devastating consequences for terminally ill Californians and their families,” said Kevin Díaz, national director of legal advocacy for Compassion & Choices. “While we respect the plaintiffs’ personal opposition to the law, they don’t have to participate in it. They certainly should not be able to take away the ability of other doctors to offer this option to dying patients to peacefully end their suffering.”

    California is one of six states — including Colorado, Montana, Oregon, Vermont, and Washington — as well as the District of Columbia, that have authorized medical aid in dying. Collectively, these seven jurisdictions represent nearly one out of five Americans (18%).

  5. A Call To The Palliative Care Community For A Patient-Centered Response To Medical Aid In Dying

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    This piece originally appeared on the March 15, 2017 Health Affairs Blog

    During the past 20 years, the end-of-life care community has devoted its energy, resources, and time into developing the medical sub-specialty of palliative medicine and promoting integration of palliative modalities into treatment of advanced illness. Progress continues toward twin goals of providing relief from the symptoms and stress of a serious illness and improving the quality of life for both patient and family. As the leading resource for palliative care development and growth, the Center to Advance Palliative Care notes that, “Palliative care sees the person beyond the disease. It represents a paradigm shift in health care delivery.”

    Compassion & Choices is the nation’s oldest, largest, and most active nonprofit organization committed to improving care and expanding choice at the end of life. We have long recognized that adult, terminally ill individuals have a fundamental right to determine their own medical treatment options as they near the end of life. We routinely hear from people who praise their palliative care team for the support either they or a loved one received during a serious illness.

    However, we also quite regularly hear from consumers who do not understand why their palliative care team does not disclose or discuss medical aid in dying as a palliative care option for mentally sound, terminally ill adults in the states where it is authorized. After all, many palliative care teams pride themselves on helping patients and families understand the nature of their illness, making timely, informed decisions about their care and feel in control of their lives. Medical aid in dying—one option on the palliative care spectrum—represents these values to patients and their families, so they do not understand why some palliative care specialists refuse to acknowledge or recognize it.

    Medical aid in dying refers to a practice in which mentally capable, terminally ill adults with a prognosis of six months or less may request medication from their doctor for self-administration to bring about a peaceful death if suffering becomes unbearable. The practice is currently authorized either through statute or court decision in six states: Oregon, Washington, Montana, Vermont, California, and Colorado. Bills to authorize the practice are also being considered in more than 20 states during the 2017 legislative session.

    In November, the Annals of Internal Medicine published an article by John Frye, MA and Stuart J. Youngner, MD, titled: “A Call for a Patient-Centered Response to Legalized Assisted Dying.” They challenged medical organizations to develop policies of “engaged neutrality” on medical aid in dying. A position of engaged neutrality indicates that it is a professional organization’s obligation to provide its members with the clinical guidelines, information, and tools they need if they choose to support their patients’ requests for medical aid in dying.

    Here, we offer data and evidence for medical organizations to consider as they explore adopting a position of engaged neutrality. We also reach out to the palliative care community in the hope that, upon renewed reflection, its members will recognize medical aid in dying as an end-of-life care option that should be integrated into the palliative care spectrum in response to growing consumer demand and impending authorization in states across the nation.

    Medical Aid In Dying Is About How Somebody Wants To Live Their Life

    Like palliative care, medical aid in dying helps patients focus on quality of life by easing their greatest fear: they will experience unbearable suffering during the last months, weeks, or days of life. It is not only about how a person dies, it’s about how one lives during the last stage of a terminal illness. It seems that some skeptics consider only the palliative implications of terminally ill individuals ingesting aid-in-dying medication. They do not recognize the enormous palliative impact on quality of life that occurs when the terminally ill individual obtains the medication, whether or not that person ultimately decides to take it. In fact, more than one-third of Oregonians who obtain the medication do not ingest it, but they get peace of mind knowing they have it if they need it. People also find reassurance and comfort in discussing medical aid in dying as an end-of-life option with their family and physician, even if they do not pursue getting the medication.

    According to a study published in the Journal of the American Medical Association, palliative care physicians in Oregon report that a patient’s questions about medical aid in dying prompt in-depth conversations between doctors and patients about the full-range of end-of-life care options, including hospice, pain management, and emotional support in addition to medical aid in dying. Numerous studies in Oregon and Washington, along with a host of national surveys, link the availability of medical aid in dying as a palliative care option to a number of positive outcomes for end-of-life care.

    A study of hospice nurses and social workers in Oregon reported that symptoms of pain, depression, anxiety, extreme air hunger, and fear of the process of dying were more pronounced among hospice patients who did not request aid-in-dying medication, indicating a strong palliative care benefit for having an aid-in-dying prescription on hand whether or not the prescription ever gets filled. University of Pennsylvania’s Center for Bioethics Director Arthur Caplan has said, “… the Oregon law probably has benefited many more people than have actually used it.”

    Medical Aid In Dying Benefits Even People Who Do Not Choose To Use This Option

    As is noted above, the mere knowledge that this end-of-life option is available to a terminally ill patient has a palliative effect and improves quality of life. The policy does not benefit only the very small percentage of people who actually choose this option; the policy benefits the many people who have a terminal illness who find comfort in knowing this option is available to them if they need it. Furthermore, medical aid in dying represents the shift in the balance of power from the medical system to the patient. When health systems and entities choose to adopt supportive policies, they are recognizing patients’ role in making decisions about their health care, which transforms how care is delivered throughout the care continuum.

    Medical Aid In Dying Improves Hospice

    The evidence suggests that medical aid in dying actually improves hospice care. Oregon has long been recognized as a leader in end-of-life care. However, the improvements since Oregon’s Death with Dignity law took effect were so notable that the authors of a 2015 Journal of Palliative Medicine study on hospice usage patterns suggested the law may have contributed to more open conversations between doctors and patients about end-of-life options, higher hospice usage rates, lower rates of hospice misuse, and better palliative care training of physicians.

    Medical Aid In Dying Brings Families Together

    Medical aid in dying helps family caregivers prepare for and accept a terminally ill person’s imminent death. The previously cited study of hospice nurses and social workers in Oregon reported that family caregivers of patients who chose medical aid in dying “were more likely to find positive meaning in caring for the patient and were more prepared for and accepting of the patient’s death” than family caregivers of patients who did not request medical aid in dying. A mental health survey of 95 Oregonian families whose loved ones chose medical aid in dying after exhausting other palliative care options yielded similar results.

    Medical Aid In Dying Could Improve The Image And Acceptance Of Palliative Care

    For decades, palliative care professionals have expressed concern about associating their practice with medical aid in dying because they believed it could damage their image. According to a 2011 Public Opinion Research Survey on Palliative Care, nearly eight out of 10 Americans “don’t know” or are “not at all knowledgeable” about palliative care. In contrast, according to nearly 50 different surveys, the issue of medical aid in dying is well known and popular among the American public, regardless of what polling company conducts the survey and how the question is asked.

    In a recent Lifeway online survey, two-thirds of Americans said it was “morally acceptable for terminally ill patients to ask their doctors for help in ending their lives.” Majority support spanned a variety of demographic groups, including Christians (59 percent), Catholics (70 percent), Protestants (53 percent), those of other religions (70 percent) and those who identify as nonreligious (84 percent), White Americans (71 percent), and Hispanic Americans (69 percent). In addition, more than half of black, non-Hispanics (53 percent) agreed that: “Physicians should be allowed to assist terminally ill patients in ending their life.”

    The November 8, 2016 successful ballot initiative to authorize medical aid in dying in Colorado garnered more “yes” votes than any other measure on the state’s ballot, including those targeting the minimum wage, cigarette taxes, and universal health care. Nearly two of every three voters (64.8 percent) supported it, with majority support across virtually every demographic group regardless of religion, party line, or race. The ballot measure received more votes than any candidate or issue on the ballot in Colorado. Medical aid in dying is no longer an issue that people run away from. It is a popular option that people want because it represents autonomy, control, and self-determination: the same core values that shaped palliative care.

    Medical Aid In Dying: Respecting Patient’s Values

    The data from 30 combined years of experience where medical aid in dying is authorized is conclusive. This medical practice benefits many and harms nothing: not palliative care, the physician/patient relationship, families, or society. Failing to recognize medical aid in dying as a part of the palliative care spectrum is a failure to respect the goals, perspectives, and values of patients who get peace of mind and comfort from this option. Proponents of medical aid in dying share a vision with the palliative care community of reducing non-beneficial treatment that only causes pain and suffering and degrades quality of life. Consumers are driving the change — demanding truly patient-centered care. But to harness their power and deliver on their promise, the palliative care community and medical establishment must embrace patients’ desires for self-determination and autonomy. It requires recognizing and supporting medical aid in dying as a legitimate medical option for dying patients.

  6. Maine House of Representatives Defies Voters, Fails to Pass End-of-Life Options Legislation

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    The Maine House of Representatives voted against LD 347, an Act Supporting Death with Dignity, also known as medical aid in dying, today by a vote of 61 to 85. The Senate advanced the legislation last Thursday by a vote of 16 to 15.

    Medical aid in dying is an end-of-life medical practice in which a terminally ill, mentally capable individual who has a prognosis of six months or less to live requests, obtains and—if his or her suffering becomes unbearable—self-ingests medication that brings about a peaceful death.

    “Even though the end-of-life options legislation was defeated today by the House, the will of the people of Maine will eventually prevail,” said Lynne Tobin, a West Boothbay Harbor resident and advocate for Compassion & Choices. “By voting against this legislation, House members are threatening a vital end-of-life option for Mainers living with terminal illnesses who are already fighting against the clock and may now never live to utilize it. That is the real cost of our lawmakers thwarting this crucial bill.”

    “The House has discounted the will of the people of Maine and the action of the Senate,” said Maine aid-in-dying advocate, Shawn Lewin, Boothbay Harbor. “The choice to utilize medical aid in dying is between an individual, their faith and their loved ones. It is a dangerous precedent to set for government to inflict its will on that of its constituents.”

    “We are deeply disappointed that members of the House didn’t see fit to join over 70 percent of Maine residents who want the option of medical aid in dying,” said Tim Appleton, Multi-State Campaign and Outreach Manager at Compassion & Choices. “The personal opinions of certain lawmakers and others should not interfere with the will of Mainers who overwhelmingly support this legislation and should not take away the peace of mind that this option brings to those who are terminally ill and enduring unbearable suffering.”

    Large majorities of Americans believe that a dying person’s decision whether to end their suffering belongs between them and their doctor, based on their own values.

    • A 2017 Public Policy Polling survey showed that 73% of Mainers support the proposed right to die legislation.
    • 74 percent of Americans support the right of a terminally ill adult to end their suffering at life’s end, according to a 2014 Harris Poll.
    • 59 percent of Christian Americans, and 70 percent of Americans of other religions, agree that: “When a person is facing a painful terminal disease, it is morally acceptable to ask for a physician’s aid in taking his or her own life,” according to a 2016 LifeWay Research online survey.
    • 57 percent of U.S. doctors support medical aid in dying, backing the rights of patients with an incurable illness to seek a dignified death, according to a 2017 Medscape poll.

    If enacted, LD 347 would allow Maine to join six other states and the District of Columbia in authorizing medical aid-in-dying legislation. Oregon, where aid in dying has been legal for two decades, has been joined by Washington, Montana, Vermont, California, Colorado and Washington, DC.

  7. Maine Senate Advances End-of-Life Options Legislation

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    The Maine Senate advanced  LD 347, an Act Supporting Death with Dignity, also known as medical aid in dying, today by a vote of 16 to 15. The bill will now move to the House of Representatives, which is expected to vote on it as soon as Friday. In 2015, end-of-life options legislation lost by a single vote in the Senate and this year, it won by a single vote. It marks a historic moment, as the legislation has never had an affirmative vote in the Senate before today.

    Medical aid in dying is an end-of-life medical practice in which a terminally ill, mentally capable individual who has a prognosis of six months or less to live requests, obtains and—if his or her suffering becomes unbearable—self-ingests medication that brings about a peaceful death.

    “Mainers overwhelmingly support medical aid in dying, and while most will never choose to utilize it, they want the option because it provides comfort to those facing pain and suffering in the end stages of a terminal disease,” said Lynne Tobin, a West Boothbay Harbor resident and advocate for Compassion & Choices. “By advancing this end-of-life options legislation, the Senate has shown a commitment to improving end-of-life care for all Mainers.”

    “We applaud the Maine Senate for passing this vital medical aid-in-dying bill and hope that the House members realize the importance of this option to the more than 70 percent of Maine residents who want it,” said Charmaine Manansala, National Director of Political Advocacy at Compassion & Choices. “The vote today shows that the time is now for the legislature to honor the will of the public and act to ensure that Maine joins six other states and the District of Columbia in authorizing medical aid in dying.”

    Large majorities of Americans believe that a dying person’s decision whether to end their suffering belongs between them and their doctor, based on their own values.

    • A 2017 Public Policy Polling survey showed that 73% of Mainers support the proposed right to die legislation.
    • 74 percent of Americans support the right of a terminally ill adult to end their suffering at life’s end, according to a 2014 Harris Poll.
    • 59 percent of Christian Americans, and 70 percent of Americans of other religions, agree that: “When a person is facing a painful terminal disease, it is morally acceptable to ask for a physician’s aid in taking his or her own life,” according to a 2016 LifeWay Research online survey.
    • 57 percent of U.S. doctors support medical aid in dying, backing the rights of patients with an incurable illness to seek a dignified death, according to a 2017 Medscape poll.

    If enacted, LD 347 would allow Maine to join six other states and the District of Columbia in authorizing medical aid-in-dying legislation. Oregon, where aid in dying has been legal for two decades, has been joined by Washington, Montana, Vermont, California, Colorado and Washington, DC.

     

  8. Medical Aid in Dying: The Cornerstone of Patient-Centered Care

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    The following article originally appeared in the May 2017 American Society of Aging Generations Magazine – End-of-Life Care edition. 

    In his brilliantly written book, Being Mortal, renowned surgeon Dr. Atul Gawande succinctly outlines the dichotomy between the amazing advances in twenty-first century medical technology and our society’s unwillingness to confront death and the dying process and, more specifically, to learn about end-of-life care options. He notes these advances have not only led to increased longevity, but also to associated complications, prolongation of disease states, and suffering:

    “Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by healthcare professionals. And we in the medical world have proved alarmingly unprepared for it” (Gawande, 2014).

    Medical ethics also have evolved in concert with this newfound technology and the acknowledgement of its sometimes negative impacts on patients. The tenets of patient autonomy and social justice have risen to become paramount ideals in the doctor− patient relationship, and a movement toward “patient-centered” or “person-centered” care has emerged. While the definitions of these terms differ, the common concept is that it is the patient’s preferences, needs, and values that guide clinical decisions.

    The Brittany Maynard Effect

    No instance exemplifies this concept more clearly than the case of Brittany Maynard, a young woman from California who in 2014 was dying of brain cancer. Even after undergoing a sophisticated surgery and numerous cancer treatments, her growing tumor was causing debilitating headaches and seizures. After exhausting all treatment options to try to cure her cancer, Brittany left her home and friends and moved to Oregon to take advantage of the state’s Death with Dignity Act. On November 1, 2014, she willingly self-administered aid-in-dying medication to end the unbearable suffering she was experiencing. Within thirty minutes of drinking the medication, Brittany died peacefully in her sleep with her family at her bedside.

    Before she died, Brittany became a champion for the rights of terminally ill people. She had been informed of all her end-of-life care options by her medical team and in consultations with our country’s best specialists. She knew what she wanted. She was an autonomous thinker, mentally capable, under no duress or coercion to make her choices, and incredibly brave and gracious. In videos she created, Brittany eloquently outlined her reasons for considering medical aid in dying. She wanted to die on her terms, with her family, in her home, with her poems and her songs. Having the medication available meant knowing she could prevent the very worst, the very last part of dying, if she chose.

    Brittany’s story exemplified person-centered care. It was an example of the medical system allowing the patient’s values and priorities—including control over their own death—to be respected. This is why millions of people worldwide responded so powerfully to Brittany’s story, because through her actions, she firmly established that she, the patient, was making her own medical decisions. If healthcare systems truly want to deliver on their commitment to be “person-centered,” then they must implement policies that respect the values of their consumers, including a patient’s control over the circumstances of their looming death. In other words, adopting policies that support giving terminally ill patients the option of medical aid in dying is a hallmark of person-centered care.

    A Palliative and Compassionate Medical Practice

    Medical aid in dying has been authorized in Oregon since 1997 (Oregon Legislature, 1997). During the past eighteen years, Oregon physicians have been allowed to discuss the full range of options in end-of-life care. As an unexpected consequence, hospice and palliative care in Oregon are unsurpassed in quality. State residents who consider medical aid in dying are almost always enrolled in a hospice program (93 percent), and an overwhelming majority (90.1 percent) are able to die at home, which is an avowed goal of most elderly and dying individuals (Oregon Public Health Division, 2016).

    There has been no evidence of abuse of the Oregon Death with Dignity Act, and no evidence that the financially disadvantaged, the uninsured, or persons with disabilities are at risk of coercion (Battin et al., 2007).

    The medical aid-in-dying laws in Oregon (1997; 2016), Washington (2008), Montana (Baxter v. Montana, 2009), Vermont (2013), California (2015), and now Colorado (2016) have core safeguards, including strict eligibility requirements, to ensure the laws are safe and work as intended. Two physicians must concur that the dying individual has a terminal illness, with a prognosis of six months or less to live, is mentally capable to make his or her own healthcare decisions, and is under no duress to request an aid-indying prescription. Written as well as oral requests must be made by the patient, and may not be made by a surrogate. If a terminally ill individual presents to the clinician with any symptoms that would indicate impaired judgment, a third opinion from a mental health specialist is necessary to confirm mental capacity before a prescription can be written. Additionally, there are waiting periods before a prescription can be written.

    Authorizing medical aid in dying also has the potential to transform the end-of-life experience for dying patients and their families. The law requires doctors to review all available end-of-life care options with their patients— from pain and symptom management to hospice and palliative care—before they can write a prescription for aid in dying. A study in Journal of the American Medical Association (Ganzini et al., 2001) credited Oregon’s Death with Dignity Act with contributing to better conversations between doctors and patients, better hospice care, and better training of physicians on pain management and comfort.

    Access to Peaceful Dying and Peace of Mind

    The act of obtaining an aid-in-dying prescription is palliative in and of itself. Approximately one-third of terminally ill people do not end up taking the aid-in-dying medication (Oregon Public Health Division, 2016), but just having it on hand—to know that they can take the medication if their suffering were to become unbearable, and that their physician respected and honored their choice—is a great comfort.

    Near the conclusion of his book, Dr. Gawande writes: “Life is meaningful because it is a story . . . and in stories, endings matter” (Gawande, 2014). In states where medical aid in dying is authorized, more people do not die because of medical aid in dying; but certainly, fewer people suffer.

    Barbara Coombs Lee, R.N., P.A., F.N.P., J.D., is president of Compassion & Choices in Denver, Colorado. David Grube, M.D., is national medical director of Compassion & Choices.

    References

    Battin, M., et al. 2007. “Legal Physician-assisted Dying in Oregon and the Netherlands: Evidence Concerning the Impact on Patients in ‘Vulnerable’ Groups.” Journal of Medical Ethics 33(10): 591–7

    Baxter v. Montana. 2009. 449, 354 Montana. 234, 224 P.3d 1211 (2009). www.compassionandchoices.org/userfiles/MontanaSupreme-CourtOpinion.pdf. Retrieved September 1, 2016.

    California Legislature. 2015. California End of Life Option Act. ABX2-15 End of life. (Sacramento, 2015). http://leginfo.legislature. ca.gov/faces/billTextClient. xhtml?bill_id=201520162AB15. Retrieved September 1, 2016.

    Colorado Legislature. 2016. Colorado End-of-Life Options Act. Proposition 106. (Denver, 2016). www.sos.state.co.us/pubs/ elections/Initiatives/titleBoard/ filings/2015-2016/145Final.pdf. Retrieved April 15, 2016

    Ganzini, L., et al. 2001. “Oregon Physicians’ Attitudes About and Experiences with End-of-life Care Since Passage of the Oregon Death with Dignity Act.” Journal of the American Medical Association. 285(18): 2363–9.

    Gawande, A. 2014. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books.

    Oregon Legislature. 1997. Oregon Death With Dignity Act. Oregon Revised Statute. Chapter 127. (Salem, 1997). http://public.health. oregon.gov/ProviderPartnerRe sources/EvaluationResearch/ DeathwithDignityAct/Pages/ors. aspx. Retrieved September 1, 2016.

    Oregon Public Health Division. 2016. Oregon’s Death with Dignity Act: 2015 Data Summary. https:// public.health.oregon.gov/Provider PartnerResources/EvaluationRe search/DeathwithDignityAct/ Documents/year18.pdf. Retrieved September 1, 2016.

    Vermont Legislature. 2013. Vermont Patient Choice and Control at the End of Life Act. Act 039, Chapter 113. (Montpelier, 2013). www.leg.state.vt.us/docs/2014/ Acts/ACT039.pdf. Retrieved September 1, 2016.

    Washington Legislature. 2008. Washington Death with Dignity Act. Complete Chapter 70.245 RCW. (Olympia, 2008) http:// apps.leg.wa.gov/RCW/default. aspx?cite=70.245. Retrieved September 1, 2016.

  9. Senate Health and Human Services Committee Advances Nevada Medical Aid-in-Dying Bill

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    The Senate Health and Human Services Committee advanced medical aid-in-dying legislation (SB 261) in a Work Session today by a vote of 3 to 2.  The bill, introduced by Sen. David Parks (D-Las Vegas) and co-sponsored by Sen. Ben Kieckhefer (R-Reno), will now proceed to the Senate floor. It received a work session after a hearing by the Committee last week.  

    Medical aid in dying is an end-of-life medical practice in which a terminally ill, mentally capable individual who has a prognosis of six months or less to live requests, obtains and—if his or her suffering becomes unbearable—self-administers medication that brings about a peaceful death.

    Ashley Cardenas, Policy & Programs Director for Compassion & Choices and Las Vegas native, stated: “Courageous people living with terminal illnesses attended last week’s hearing and told their personal stories, urging lawmakers to pass the bill so they could have the option of medical aid in dying if and when no other treatment provides relief for their unbearable suffering. Hundreds more have visited their legislators, submitted testimony and made their voices heard in support of medical aid in dying. By advancing SB 261, the Committee members have shown a commitment to improving end-of-life care for all Nevadans.”

    Large majorities of Americans believe that a dying person’s decision whether to end their suffering belongs between them and their doctor, based on their own values.

     

    • Nearly three out of four Nevada voters (72%) support legislation introduced in the state legislature that would give mentally capable, terminally ill adults with six months or less to live the option to get a doctor’s prescription for medication the could decide to take die peacefully in their sleep if their suffering becomes unbearable, according to an April survey by Public Policy Polling.
    • 74 percent of Americans support the right of a terminally ill adult to end their suffering at life’s end, according to a 2014 Harris Poll.
    • 59 percent of Christian Americans, and 70 percent of Americans of other religions, agree that: “When a person is facing a painful terminal disease, it is morally acceptable to ask for a physician’s aid in taking his or her own life,” according to a 2016 LifeWay Research online survey.
    • 57 percent of U.S. doctors support medical aid in dying, backing the rights of patients with an incurable illness to seek a dignified death, according to a 2017 Medscape poll.

     

    If enacted, SB 261 would allow Nevada to join six other states and the District of Columbia in authorizing medical aid-in-dying legislation. Oregon, where medical aid in dying has been authorized for two decades, has been joined by Washington, Montana, Vermont, California, Colorado and Washington, DC.

  10. Supporters from Across the State Travel to Advocate for Medical Aid in Dying at Compassion & Choices New York Lobby Day

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    On May 9, Compassion & Choices New York was joined by over 100 supporters from across the state in calling on the New York State Legislature to do what the public wants and pass the Medical Aid in Dying Act (S.3151/A.2383). Legislators, advocates and people who have been personally affected by the death of a terminally ill loved one who died without access to medical aid in dying, made their voices heard and shared their compelling stories at a press conference held in the Capitol Building.

    “New Yorkers overwhelmingly support medical aid in dying and now the legislature needs to catch up to the public,’ said Corinne Carey, Compassion & Choices New York Campaign Director. “Lawmakers seeking reelection next year should be paying attention to what their constituents want, and they should act to make sure that New York joins six other states and the District of Columbia in authorizing medical aid in dying before Election day 2018.”

    P1030192“I want to live more than anything else. I want to see my son graduate college, I want to see him finish medical school, I want to someday hold my grandchildren,” said Rochester resident Susan Rahn, who was diagnosed with stage four breast cancer four years ago. “What I don’t want is to suffer and be in uncontrollable pain while my body shuts down for what could be weeks and I don’t want my son and my family to have to watch me go through that. Medical aid in dying is a choice I should be able to make for myself and for my family.”

    “I cared for a patient who took his own life with a shotgun to end his suffering from COPD. His violent death had a profoundly negative impact on his family, and it changed my understanding of suffering. It strongly influenced my choice to become an advocate for medical aid in dying,” said David Pratt, MD, former Schenectady County Commissioner of Public Health Services, and a palliative care provider. “New Yorkers should not have to take desperate and violent measures when pain and suffering become too much to bear. They should have access to the peaceful and sound option of medical aid in dying.”

    18404199_658371067688553_8208374984691205832_oLindsay Wright, wife of Youssef Cohen, a professor of politics at New York University, who died from incurable mesothelioma, said: “My husband died last year after fighting an incurable disease for four years. He wanted to die at home, surrounded by friends and family. But he knew he couldn’t have full control over his own death in New York. We moved to Oregon so that Youssef could take advantage of their aid in dying law.  New Yorkers with terminal illnesses deserve to have the right to choose the kind of death they want here in New York. I urge our legislators to come together now to pass medical aid in dying legislation so that no New Yorker is forced to do what we did – leave their family and friends behind to die somewhere else. Make us all proud to be New Yorkers.”

    Janet Green, who lost her partner of 26 years, Harry, one year ago today, May 9, 2016, said: “Harry loved life, with a passion for hunting, fishing and camping. Even after being diagnosed with brain cancer eight years ago, he continued to try do things he loved. In February 2016 he fell. Diagnostic testing revealed bone cancer. He realized his life would continue to be painful. At that point, he wanted me to shoot him. Of course, I would not.

    “Hospice came to our home and provided support for me, and pain medication for Harry. They were wonderful but it was not enough. His pain often broke through and became unbearable.  He often said, ‘please help me die.’  It was agonizing to watch the man I love suffer so much. I believe terminally ill adults should have legal options that help them die without prolonged suffering, and that’s why I’m asking lawmakers to support the Medical Aid in Dying Act,” Green said.

    P1030204Former Assemblymember Janet L. Duprey (R-Clinton/Franklin/St. Lawrence Counties), said: “I am so supportive of the Medial Aid in Dying legislation, I’m returning to Albany for the first time since I retired at the end of 2016.  Although I’ve always preferred to keep my personal life private, I am sharing the story about my parents’ suffering during their last days.  If legislators will consider the agony of watching loved ones die slow tortuous deaths, they will realize the importance of allowing people to have the ability to choose their own destiny.”

    P1030161Advocates then made in-person visits to their legislators to discuss why their support is crucial in passing medical aid-in-dying legislation.  

    There is a steady groundswell of support building for medical aid in dying in New York. The Medical Society of the State of New York recently voted to authorize a survey of physicians on medical aid in dying and the New York State Public Health Association has now endorsed the legislation, as has the New York Civil Liberties Union. These organizations have now joined groups like the Statewide Senior Action Council, ACT UP-New York, Harlem United, the Rochester Breast Cancer Coalition, Mobilizing Preachers and Communities, and Housing Works in support.

    “It’s hard to talk about death and dying, but our work is to sit down with each lawmaker one-on-one to hear their questions and concerns about this legislation. New Yorkers are counting on their lawmakers to face this difficult issue with a clear understanding of what the bill would do, not clouded by misinformation or distortion,” Carey said. “We are confident that groundswell of public support will be well represented in the Legislature.”