Hello from the Lower Hudson Valley in beautiful May.
The below spring update from NYS Campaign Director Corinne Carey summarizes all the swirling activity around New York’s Medical Aid in Dying Act.
A recent highlight for your LHV team leaders Laura Kelly and Stacey Gibson was the opportunity on May 3 to voice our support for the bill in front of the New York State Assembly Health Committee (led by the resolute committee chair Dick Gottfried (D-Manhattan) and Assemblymember/bill sponsor Amy Paulin (D-Scarsdale). Both Laura and Stacey told the stories of their loved ones’ unfortunate last days in a succinct 5 minutes. You can watch their testimonies in the links below (go to the May 3 section of this bulletin).
It’s still (unfortunately) going to be a long battle to get this law passed, but if you listen to the testifiers you’ll see that right and might are on our side. We appreciate your continued support. Onwards and upwards!
Recent highlights and some next steps for the readers of this bulletin:
Advocates from all four regional, statewide, and national groups came together to form the New York Alliance for Medical Aid in Dying. You can read about it here.
Compassion & Choices New York tabled at the SOMOS El Futuro conference in Albany, answering questions about end-of-life options and talking to conference-goers about the Medical Aid in Dying Act.
But this Spring’s highlight was the fact that the New York State Assembly Health Committee held two hearings on the Medical Aid in Dying Act, A2383a/S3151a this Spring. The first hearing was held in Albany on April 23; the second in NYC on May 3. The Committee heard 74 people testify – 48 in favor and 26 opposed – over 14 hours.
You can watch video of both hearings here: http://nyassembly.gov/av/ hearings/ The video is easy to navigate; you can scroll through to find the person you want to see testify. There’s a box underneath the video that shows the order in which people appeared at each hearing, and if you click on that person’s name, you’ll be taken to that segment of the video. You can review some of the highlights from each day’s testimony below.
We were pleasantly surprised by news of the release of a Quinnipiac poll on May 3, the day of the second hearing, that showed that 63% of New York voters support “allowing doctors to legally prescribe lethal drugs to help terminally ill patients end their own lives.” Only 29% were opposed. The poll also showed that non-white voters support the idea by a 15-point margin: 54% – 39%.
The hearings garnered positive coverage, including pieces from the Albany Times Union and editorials in favor of the bill issued by the Middletown Record and the Oneonta Daily Star. Other coverage focused on the opposition from MSSNY and people living with disabilities.
Next Steps for You
The hearings held by the NYS Assembly Health Committee elevated to a new level the issue of expanding end-of-life choices to allow for medical aid in dying. Lawmakers are having discussions amongst themselves about this issue, and the next step for the legislation would be a vote of the NYS Assembly Health Committee on the bill. This can’t happen without your help.
The legislative session ends on June 20, and we need those who support this bill to help us grow support, particularly in places like New York City, Long Island, and Buffalo. There are three things that you can do right now to help us move the bill in the legislature:
- If you haven’t already sent a message to your elected representatives in Albany, please do so right now. You can use this link to send a personalize message today: https://www. compassionandchoices.org/new- york/tell-the-legislature/ You’ll need to provide your address on the page so that the program knows which Assemblymember and which Senator to send your note to.
- If you have the time to make a phone call today, you can look up the people who represent you in Albany and call them. Click on this link: http://www.elections.ny.gov/ district-map/district-map.html After entering your address and hitting “go,” select NYS Senate to find your Senator, and NYS Assembly to find your Assemblyperson. Each of those representatives should have a webpage that you can click on to find their district office phone number. Call them and tell them that you support the Medical Aid in Dying Act, A.2383/S.3151.
- In-person meetings with your representatives in your own home town are the most important way that you can let them know that you support this measure. If you haven’t yet met with your Assemblymember or your Senator to let them know that you want them to pass the Medical Aid in Dying Act, please get in touch with us and we’ll match you with a group and help you set up a meeting. Email NY@compassionandchoices.org today to find out how to get involved with a meeting in your hometown!
This summer, our campaign will be in Buffalo, Brooklyn, Long Island, and several other communities throughout the state at street fairs and events to talk to voters about their support for the Medical Aid in Dying Act. If you’d like to get involved in your own area, or join us at one of our already-scheduled events, please email us at NY@compassionandchoices.org.
If you want to plan an activity in your own area, we have plenty of materials and experience to share with you! If you have an idea for a canvassing or signature-gathering event, or a table at your own local fair or event, we can talk with you about your idea, and ship you an Advocacy Toolkit so that you can run an event yourself. Contact us at NY@compassionandchoices.org to find out more.
You can also follow us on Facebook here: https://www.facebook.com/ CompassionandChoicesNewYork/
We look forward to seeing you this summer, and working with you to ensure that all New Yorkers have access to the full range of choices at the end of life, including access to medical aid in dying.
Below are some highlights from some of those who testified in support of the bill on April 23 in Albany.
>>Dr. Diana Barnard from Vermont was the first to testify on April 23 in Albany, and she described her experience as a provider in Vermont, and the 40+ combined years of evidence over the 8 jurisdictions that now authorize medical aid in dying.
>>Dr. Omega Silva, an 81-year-old retired physician living in Washington, D.C. with three cancer diagnoses who taught and practiced medicine in D.C. for 50 years, served as the first woman president of the Howard University Medical Alumni Association and was former president of the American Medical Women’s Association, traveled 14 hours to Albany to tell lawmakers how the instinct to add more safeguards to a bill that already has enough has resulted in no one being able to use the law in DC.
>>Former Republican Assemblymember Janet Duprey addressed the Committee and spoke of her own parents’ deaths. She said: “it took eleven agonizing days as my family and I watched our mother and grandmother starve to death. When the end finally came my daughter and I were holding her hands. I can tell you from experience, forcing a person and their loved ones to live through that kind of torture isn’t something we should be proud of as a society. I hope none of you ever have to go through it. To this day I still miss my parents. I am not going to presume that my Dad a devout Irish Catholic or my Mom an equally devote Methodist would have chosen to ask for medical aid in dying at the end. But I am certain that they should have had the ability to choose their own destiny, and I want the ability to choose my own destiny.” You can read an opinion piece that Assemblymember Duprey authored on this topic here.
>>Dr. Christopher Riddle, an ethicist and disability rights advocate from Utica, testified that denying access to aid in dying because we fear the risk that it poses to people living with disability actually demeans and infantilizes people with disabilities. He said, “if we want to promote dignity and respect for the disabled, I suggest it is of utmost importance that we do not allow opposition to assisted dying to deny basic autonomy rights at the end of life.”
>>Disability right advocate Gene Hughes echoed this theme when he talked about his own desire for autonomy and independent living, and how he and others living with disabilities deserve to make their own decisions about dying as they are about the lives the live.
>>Two women living with terminal illness brought the room to tears, and also laughter. Bernadette Hoppe and Susan Rahn both did media before and after the hearing, you can see two great stories about Bernadette from Spectrum News and the Buffalo Law Journal. Bill sponsor, Assemblymember Amy Paulin featured Susan’s testimony on her Facebook page here. Susan was also featured in an excellent article on this subject earlier in our campaign in the Rochester City paper.
>>Scott Barraco from Rochester testified about the horrific death his girlfriend Cathy suffered and said “People not only suffer terrible deaths against their wishes, they suffer the anticipation of it. Cathy was robbed of her ability to plan and make decisions about her death in the same way she did for her life.” Barraco’s story was featured in a piece run on Spectrum News after the hearing (you can view it here: http://spectrumlocalnews.com/ nys/capital-region/news/2018/ 04/16/new-alliance-for- medical-aid-in-dying- legislation), and his story has resonated with people far beyond the bounds of New York State.
>>Dr. Bob Milch, an internationally-recognized palliative care specialist and founder of hospice in Western New York and Dr. Jay Federman, a Saranac Lake-based family doctor and Medical Director for the Tri-Lakes division of High Peaks Hospice, both delivered strong testimony in favor of the bill. Dr. Federman testified that aid in dying would not be an alternative to palliative care but instead would represent “one component of end-of-life” care. The Oneonta Star was persuaded by this, and issued a strong editorial in favor of the bill on May 5.
>>Two women from Ithaca told two stories that began with the diagnosis of a loved one with cancer, but ended in dramatically different ways. Myra Shulman talked about the peaceful death of her mother under California’s End of Life Option Act, and Laurene Gilbert told the committee about how her husband, because he lived in New York without access to aid in dying, suffered, tried to take his own life, and died days later in a coma, not a death he deserved.
>>Barbara Thomas represented the League of Women Voters, which recently came out in support of the legislation after a year-long deliberative process among all of the state’s local chapters. Barb serves as the League’s specialist on this issue in part because of the experience she had with her husband, who suffered tremendously at the end of life and begged her for help to die.
>>Janet Green from Poughkeepsie testified before the committee in remembrance of her best friend and partner of 26 years, Harry, whose pain medication never fully alleviated his pain. Harry begged for help to die. “I feel a sense of peace,” Janet said, “knowing that when the New York State legislature finally adopts the Medical Aid in Dying Act, they will be helping me to honor Harry’s memory, and prevent needless suffering for others like us.”
>>Reverend Doctor Richard Gilbert testified late in the day, and summarized many of the arguments for authorizing medical aid in dying. He spoke most eloquently about the hundreds of deaths he’s attended, distinguishing suicide — characterized by pain, despair, and anguish, with medical aid in dying, the right to die with dignity, “the last right of a human being.” He concluded, “the greatest reverence for life is to end human suffering.”
Testifying against the bill at the April 23 hearing were: Dr. Sally White who talked about how pain and suffering are a part of life and cannot be avoided; disability rights advocates from the group Not Dead Yet; and Kristen Hanson, the wife of recently-deceased opponent and past president of the Patients Rights Action Council, JJ Hanson.
Dr. Thomas Madejski, the new president of the Medical Society of the State of New York (MSSNY) also testified against the bill, citing a survey that had been designed to determine the position of it’s doctors. See MSSNY’s release here. Madejski testified that the group’s survey suggested that a majority of New York doctors oppose aid in dying. Assemblymember Paulin, the bill’s sponsor challenged MSSNY’s president on the “Survey Monkey” results, asking whether MSSNY knew how many respondents were MSSNY members, let alone doctors.
Madejski has since admitted that advocates on both sides of the issue circulated the survey to non-MSSNY members. The New York Alliance for Medical Aid in Dying responded to Dr. Madejski’s testimony with this press release, and Compassion & Choices’ African American and Latino Leadership Councils addressed the Health Committee with a letter in response. [insert link here]
Below are highlights from some of those who testified in support of the bill on May 3 in New York City.
>>3 bioethicists testified in favor, including one of the nation’s leading bioethicists from NYU, Dr. Arthur Caplan, who described how he changed his mind and dropped his opposition to aid in dying. He was featured in an article in Religion News that touched on his views on aid in dying.
>>3 family members lovingly described beautiful deaths of people who used aid in dying laws in WA & VT. You can read a bit about Nancy Murphy’s sister’s story here; Nancy lives in NY’s North Country and a snippet from her story was used in a news article several months ago. Rachel Remmel traveled to NYC from Rochester to talk about her 31-year old brother’s use the WA law–the youngest person to use it. Her brother documented his decision in very powerful blog entries that Remmel talked about. And, the room was reduced to puddles when 80-year old father Richard Friedberg broke down in tears talking about the beautiful death of his belly-dancing daughter who used Oregon’s Death with Dignity law.
>>7 physicians, including New York’s noted palliative care physician, Dr. Timothy Quill of the Supreme Court case, Vacco v. Quill; two physicians from the New York Academy of Family Physicians, Dr. Sara Nosal and Dr. Heather Palladine, who spoke of their own experience, and the position of the Academy, which issued its own press release about the group’s strong support; Dr. David Pratt who’s TED talk you can see here, who found a way to weave Yogi Berra into his testimony; Dr. Sarah Egan, director of Hospice of New York; New Paltz family physician Dr. Maggie Carpenter; and retired pathologist and Long Island resident Dr. Yale Rosen, who had this piece published in 5/3’s Newsday.
>>6 people who told heart-rending stories of the deaths of loved ones who were not able to access medical aid in dying, and died in needless pain and suffering, including Jay Kallio’s girlfriend Bonnie Rose Marcus who described Jay screaming in pain in his Beth Israel hospital bed (you can see a video about Jay here); Stacey Gibson who detailed her husband Sid’s horrendous VSED death (you can read about their story here); Lindsay Wright who told of packing up and leaving NYC so that her NYU professor husband Youssef Cohen could die in Oregon (you can watch their story here); Laura Kelly, whose tough, Irish Catholic dad asked to go to VT, but was too weak to do so (see their story here); and Peggy Lang told the committee about her mom’s hellish experience in hospice, despite the promises made by the facility in it’s happy brochures.
>>The O’Connors, a couple from Red Hook, NY who told a gorgeously woven-together story about Patty’s brother who died alone, not wanting to jeopardize anyone in his family when he took his own life. Ed said: “there was only one person who asked us the natural question: ‘How did he do it?’ And the question was not asked out of morbid curiosity, but out of practicality.” He asked the committee to pass the Medical Aid in Dying Law to give his sister, a New Yorker with ovarian cancer, the peace of mind to know that she could end unbearable suffering and could do so surrounded by the love of her family.
>>New York City resident Ida Schmertz talked about her 30-year journey living with three lymphoma diagnoses and her desire for medical aid in dying when there are no more options left;
>>Representatives from the New York Civil Liberties Union (Beth Haroules), and the Latino Commission on AIDS (Guillermo Chacon) who both shared strong testimony in favor of the bill. You can read NYCLU’s testimony here. El Diario posted a great piece featuring Chacon that you can read here.
>>Our partners with our newly-formed New York Alliance for Medical Aid in Dying (which you can read about here) also testified, with 2-3 of their own supporters. Peg Sandeen was the first to appear before the committee; and David Leven and Judith Schwartz provided quality testimony in favor of the bill. With them was a terminally ill supporter Barbara Backer, as well as Columbia-based bioethicist David Hoffman.
>>Compassion & Choices’ New York Campaign Manager Amanda Cavanaugh told the very moving story of her own partner’s painful death while receiving hospice care; and Campaign Director Corinne Carey was the last person to testify, addressing two points opponents had made that hadn’t been addressed by any other testifier: the perceived flaw in the definition of terminal illness that opponents said would allow someone who was unable to afford treatment to access aid in dying; and that people of color oppose the legislation.
Testifying against the bill in New York City were several Catholic doctors; Margaret Dore of Choice is An Illusion; several NY-based advocates living with disabilities; Julie Hocker, a disability rights advocate who works for the American Conservative Union; a representative from Agudath Israel; a doctor from Montreal who spoke about Canada’s experience with aid in dying; A Nevada doctor and Catholic Church deacon, T. Brian Callister; Ed Mechmann, Director of Public Policy for the Archdiocese of New York, and several family members who spoke of premature prognoses and the valuable time spent with dying loved ones they would have been deprived of had aid-in-dying been an option.