On Thursday, August 25, 2022, Patient Choices Vermont (PCV) Board Member Dr. Diana Barnard, in collaboration with the national organization Compassion & Choices and Lynda Bluestein, a terminally ill Connecticut resident seeking medical aid in dying, filed a federal lawsuit to challenge the residency requirement contained in Vermont's Act 39. PCV applauds this work and stands ready to educate the public about the availability of medical aid in dying across state lines.
Ms. Bluestein is diagnosed with stage IIIc3 cancer. Medical aid in dying is not authorized in her home state and she would like the option to access medical aid in dying in Vermont should her suffering become unbearable.
Act 39, like similar laws in other states across the country, makes end-of-life choice available only to residents of Vermont. PCV agrees with the plaintiffs in the lawsuit who state that this restriction is unconstitutional, and that it improperly restricts people from crossing state lines to receive the medical services they seek. Medical aid in dying is the only medical service that is subject to such a restriction.
A recent lawsuit settlement in Oregon creates an important precedent for deleting the residency requirement in Vermont. The Oregon settlement requires officials there to 1) issue directives halting enforcement of the unconstitutional residency provision, and 2) initiate a legislative request to permanently remove the residency language from the law.
We look forward to to the day when all individuals seeking end-of-life choice can access the services they want.
The PCV Helpline and website resources will be augmented to assist out-of-state residents once they can legally access medical aid in dying in Vermont.
Dr. Diana Barnard
A native Vermonter, Dr. Barnard is Board Certified in Hospice and Palliative Care as well as in Family Practice. After more than 17 years in private practice in Addison County, she is a Palliative Care Medicine Physician at University of Vermont Medical Center and an Associate Professor at the University of Vermont College of Medicine.
Dr. Barnard was recognized in 2019 by the Madison Dean Education Fund award entitled "Excellence in End of Life Care." She has served on the Ethics and Palliative Care Committees and Board of Directors of Porter Hospital and also on the board of Hospice Volunteer Services of Addison County. Dr. Barnard was honored by the UVM Larner College of Medicine with the 2020 Service to Medicine and Community Award.
In 2021, Dr. Barnard was named Vermont Family Physician of the Year. She is the Vermont liaison to the American Clinicians Academy for Medical Aid in Dying. Prior to her present position, was the Medical Director and a board member of Helen Porter Healthcare and Rehabilitation Center. She is a passionate advocate for holistic, comprehensive and patient directed care at the end of life. Dr. Barnard was instrumental in the passage of Act 39 as one of the few practicing physicians who testified for the need for medical aid in dying. She has worked tirelessly to educate medical professionals and serves as the primary resource for clinicians who call PCV or contact her directly for information on aid in dying.
Or mail a check to:
Patient Choices Vermont
PO Box 671
Shelburne, VT 05482
Many thanks for your support and encouragement.
Like many Vermonters, I have been distraught over the U.S. Supreme Court decision to reverse Roe vs Wade. As a lawyer, I am keenly aware that this reversal of a half-century of legal precedent is tied to legal and political theories that pose broader threats to our rights to bodily autonomy.
We are not immune to threats here in Vermont. In 2016, PCV intervened in a lawsuit brought by the Christian Medical and Dental Association (CMDA) claiming that Vermont doctors who have religious objections should not have to discuss medical aid in dying with their patients. The lawsuit was dismissed, but the CMDA continues to look for ways to limit access to medical aid in dying across the country. In California, they sued claiming that doctors who object to medical aid in dying should not have to transfer patient medical records to a new doctor who stands ready to help that patient.
Medical aid in dying laws and the laws requiring that an individual's advance directives be followed are grounded in the concept of bodily autonomy – the idea that people have the right to determine how to care for their own bodies and what decisions best serve their lives.
With the recent Supreme Court case on abortion, we are concerned that aid-in-dying opponents will be emboldened to attack end-of-life choice. These people already have tied their opposition to abortion together with end-of-life choice. For example, in thirty states (not Vermont), when a person is pregnant, her advance directives are void by state law.
The basic right to bodily autonomy is at stake. We view attacks on patient-directed care as potentially undermining a patient’s agency in a wide range of medical decision-making.
At PCV we are watching events at the national level, and we are prepared to act if end-of-life choice is threatened in Vermont.
PCV stands ready to defend our right to bodily autonomy.
Or mail a check to:
Patient Choices Vermont
PO Box 671
Shelburne, VT 05482
PCV Welcomes former State Senator Claire Ayer to the Board of Directors
Claire Ayer brings extensive political and medical practice expertise to the PCV team. She was instrumental in the adoption of Act 39 in 2013, when she served as Chair of the Senate Committee on Health and Welfare. Ms. Ayer has served for the past year on the PCV Advisory Board where she provided strategic advice on educating stakeholders about the improvements that were needed in Act 39. We look forward to her closer involvement in PCV's mission.
Bring a Workshop to Your Community
PCV stands solid in our commitment to educate across all sectors of our community. PCV workshops help individuals to have knowledgeable discussions with their medical teams about end-of-life choices. Our education for medical professionals emphasizes the importance of providing patients with full information about their options, including medical aid in dying and how to engage patients in decision-making.
PCV has been making sure that members of the community are up-to-date on the new provisions of S.74, improving Act 39. We recently:
"Books about medical aid in dying are beginning to appear with frequency," says PCV Board Member Susan Gillotti.
"It’s as if everyone now--doctors and patients alike--has recognized that we can’t keep pretending that we don’t die. Anita Hannig is a cultural anthropologist at Brandeis University where she teaches classes on the cultural dimensions of medicine and the end of life. She spent five years in Oregon and Washington meeting families in living rooms and hospital suites, listening to proceedings in courtrooms and at public hearings, and visiting state archives. For eight months, she worked as a hospice volunteer and accompanied patients during the final weeks of their lives."
Hannig writes movingly of how medical aid in dying can soften grief. It allows time for reconciliation with loved ones. “Assisted dying,” she writes, “is much larger than swallowing a lethal dose of medication: it changes how we live, how we die, and how we envision our future…It introduces new possibilities for human beings to direct the end of their lives…(and) to think about how they want to leave things with their loved ones, repair relationships, and plan for a personalized departure… Loved ones didn’t feel as blindsided.”
Click to read the full review...
We are pleased to announce that Senate Bill 74 was signed by the Governor today, marking an important milestone for Vermonters who value end-of-life choice. This bill, passed with strong tri-partisan support, updates and improves the state’s Patient Choice at End of Life Law, Act 39.
With the passage of Senate Bill 74, a patient can now make the required requests for medical aid in dying by video telemedicine when their doctor determines that this approach is appropriate. The bill also eliminates the additional 48-hour delay at the end of the process before a patient can receive the prescription and corrects what was a technical deficiency in the immunity clause of Act 39.
It was the voices of people like Karen Oelschlaeger who had struggled through the Act 39 process that brought these issues to the attention of the legislature.
“My daughter, Karen Oelschlaeger would be pleased to know that by speaking about her experience with medical aid in dying she had a positive influence that will benefit future patients. Thank you to the Vermont legislature for passing S.74.” - Linda Oelschlaeger
PRESS RELEASE: Vermont House Gives Preliminary Approval to Bill to Improve 2013 Medical Aid-in-Dying Law
SB 74, already approved by Senate, would make three critical improvements to Act 39
(April 13, 2022 - Montpelier, VT) Patient Choices Vermont and Compassion & Choices praised the Vermont House of Representatives for their preliminary approval Thursday of Senate Bill 74 to update and improve the state’s 2013 Patient Choice at End of Life Law, Act 39. The Vermont Senate passed the bill on a voice vote on Jan. 25.
Act 39 gives terminally ill adults in Vermont, who are mentally capable of making their own decisions, the option to obtain a doctor’s prescription for aid-in-dying medication they can decide to self-administer to peacefully hasten their death, if they so choose. Participation in the law is completely voluntary for patients, physicians and pharmacists.
Vermont is among 10 states, as well as Washington, D.C., that have similar laws providing end-of-life choice for more than one out of five Americans (22%).
“On behalf of the many Vermonters who express their gratitude for Act 39, we thank the Vermont House for listening to the voices of terminally ill Vermonters,” says Betsy Walkerman, President of Patient Choices Vermont. “These improvements will make proper use of the law less onerous for dying people while keeping the safeguards strong.”
“Vermont lawmakers have reviewed the evidence and data from Vermont and the other authorized states and recognized that it’s time to eliminate unnecessary regulatory roadblocks that prevent some terminally ill people from accessing medical aid in dying,” said Kim Callinan, president and CEO of Compassion & Choices, the nation’s largest end-of-life care advocacy group. “As a result, more terminally ill Vermonters will be able to avoid needless suffering and die peacefully.”
The bill would improve the following three aspects of Act 39:
Dr. Diana Barnard says, “Tony Digiacomo, husband of Lynn Achee, a former patient of mine asked me to share her story in the hopes that other people would not have to suffer the delays and heartache that she did. The long Act 39 process caused her to miss the window for using medical aid in dying. Her husband Tony said she would be grateful to know that S.74 has been approved by both houses of the legislature.”
Patient Choices Vermont (PCV) is a non-profit organization focused on educating Vermonters about end-of-life choice and medical aid in dying. PatientChoices.org
Compassion & Choices is the nation's oldest and largest nonprofit organization working to expand and improve healthcare options for the end of life, with 450,000 supporters nationwide. For more information, visit: CompassionAndChoices.org
Patient Choices Vermont Media Contact:
Compassion & Choices Media Contact:
Compassion & Choices Latino Media Contact:
Patricia A. González-Portillo
We are pleased to announce that the Vermont House Committee on Human Services has scheduled a hearing on S.74 on Thursday, March 31 at 9:15 am. The Committee invited Dr. Diana Barnard; Kim Callinan, President of Compassion & Choices, and myself Betsy Walkerman, President of Patient Choices Vermont (PCV) to testify. We look forward to sharing our team's expertise with our legislators. You can listen live on March 31 or replay afterwards on the Vermont House Committee on Human Services YouTube Channel.
See below for how to contact your representatives.
VTDigger Op Ed:
Many thanks to Vermont Digger for publishing our Op Ed Walkerman & Callinan: Empowering patients at the end of life — S.74, co-authored by Betsy Walkerman and Kim Callinan. This article highlights the very personal aspects of end-of-life choice, and makes it clear how the S.74 changes can alleviate suffering.
News from Oregon - End of Residency Requirement:
Like Vermont and all the other states with medical aid in dying laws, Oregon law has required that the patient be a resident of their state. Yesterday that changed. As a result of a lawsuit challenging the constitutionality of the residency provision, Oregon will no longer require a person to be an Oregon resident in order to qualify for medical aid in dying.
PCV will be studying the impact of this development on Act 39’s similar residency requirement.
Contact your Representatives:
We've set up an easy way for you to contact your representatives in support of S.74. PCV has already provided the basic message (which you can easily edit with your own personal story or comments) at ContactMyPolitician.com. All you need to do is provide your address to see a display of your own specific legislative representatives. Select politicians listed as members of the State House and click Send Message. It's that easy.
Act 39 passed in 2013 largely because of the vast number of supporters like you who contacted your legislators when the bill was coming up for a vote. We need your help to show our legislators that Vermonters still care deeply about this issue. We hope you find it worth your time to invest a few minutes right now to help make end-of-life choice more accessible in Vermont.
Thank you so much!
Betsy Walkerman, President PCV
Over the course of a few days, my mother, PCV co-founder Ginny Walters, said goodbye to family and friends, drifted off to sleep and died peacefully. She was 96.
Ginny’s extensive computing and organizational skills and her ability to write cogently and clearly were instrumental in launching and sustaining Patient Choices Vermont during the eleven-year legislative campaign from 2002 to 2013. While my father, Dick Walters, was the outspoken face of PCV, Ginny provided the backbone, editing the website, running a meticulous supporter database, coordinating volunteers and editing every piece of writing that went out the door. Even a few days before she died, Ginny was still sending me articles that she thought we could post on the PCV Facebook page.
Ginny was a physicist, one of the first women in the US to earn her PhD in this demanding science. If you’d like to learn more about her, Click Here for the website her family has created in her memory.
If you knew Ginny or worked on the campaign with her, and have a story to share, please go to the Add Your Story Here page on her website. Then check back to see memories other people have shared.
Ginny requested that if people were so inclined, donations be made in her honor to either Patient Choices Vermont or Planned Parenthood of NE.
Thanks so much for your participation as we carry forward the work launched by Dick and Ginny Walters.
Betsy Walkerman, President
We are pleased to report that on Tuesday, January 25, 2022 the Vermont Senate passed Senate Bill 74, which updates and improves Act 39.
PCV wishes to thank Senator Ruth Hardy for her presentation of the bill on the Senate floor and her deeply knowledgeable responses to questions. We also thank Senator Ginny Lyons and the members of the Health & Welfare Committee for their careful consideration of the bill. Thanks as well to the bill sponsors, Senator Richard McCormack, Senator Ginny Lyons, Senator Alison Clarkson, and Senator Michael Sirotkin.
Special Thanks to Willem Jewett
At the end of December, Former Representative Willem Jewett contacted PCV offering to share his story with the hope that it would help with passage of S.74. Willem Jewett was majority leader in the House of Representatives in 2013 and played a critical role in the passage of Act 39. We were very sad to learn of his rapid decline from cancer. In his last weeks, he made a priority of continuing his advocacy, while he prepared to use medical aid in dying himself. Our deep condolences to his family and friends.
In early January, we recorded this conversation which was quoted on the Senate floor, and brought the importance of S.74 to a personal level.
PCV was instrumental in connecting Willem Jewett to reporters at VTDigger, resulting in these two articles:
When Vermont’s medical-aid-in-dying law, Act 39 was created, legislators placed great weight on preventing its improper use. Now, with eight years of experience and zero reports of abuse, it’s time to listen to Vermont's terminally ill people, the ones the law was intended to serve, by making it less onerous for dying people to properly use Act 39.
Under PCV’s guidance, Senate Bill S.74 was introduced in February 2021 to make three important improvements to the law:
“Those 48 hours were a nightmare. Just the sheer emotional toll it took on my mother was so painful to watch.” —Duncan Allen-Burns, son of Dee Allen, who used aid in dying in 2020.
Duncan was referring to the mandatory 48-hour delay that all patients must endure after all other parts of the rigorous Act 39 approval process have been completed. This delay caused Dee Allen great fear that she would not be able to self-administer the medication by the time the 48 hours had passed.
“I could not wait to get through that timeline. Removal of that in-person requirement would be a huge relief.”— Karen Oelschlaeger.
The Act 39 process requires that two separate requests to use Act 39 be made at least 15 days apart — in the physical presence of the doctor. Karen Oelschlaeger was 37 years old and dying from stomach cancer. You can hear the pain and frustration in her voice on her video on PCV’s website as she describes the arduous process of traveling to required appointments.
Act 39 currently provides legal immunity only for doctors. Participation by supporting medical personnel and pharmacists would be more consistent and predictable if legal immunity were explicitly spelled out for everyone involved in the process.
The challenge before us now is to guide Senate Bill S.74 through both houses of the Vermont legislature during the 2022 session. We laid the groundwork in 2021.
You can help Act 39 patients avoid needless suffering.
Thousands of people benefit from our work!
Successful legislative action requires time, effort and, frankly, money.
Many thanks to all of you who have supported PCV’s work over the years. Thank you to those who send notes of encouragement and share stories. Thank you to those who make gifts in honor of dear friends. Thank you to those who give monthly. Thank you to our major donors who can afford and choose to give $1,000 or more to this important cause.
All donations speak to the strength of our community and commitment to this basic civil right.
Patient Choices Vermont is the only Vermont organization focused on the rights of people who seek medical aid in dying.
The best part of our work is seeing the impact we have at such a meaningful time of life.
“I couldn’t be more behind her decision, and that’s coming from a place of pure love.
We really appreciate the work that you are doing. We’re very thankful our mom was in a state where she got to choose the way she went out.” —Dee Allen’s son, Duncan
Patient Choices Vermont
PO Box 671
Shelburne, VT 05482
Celebrating Doctors Who Teamed up in Support of Medical Aid in Dying; Encouraging Early Planning with Your Doctor
Who is the tough-looking team in this New York Times photo from 2005?
Standing behind my father, Dick Walters, are Dick Austin, MD, Carmer Van Buren, MD, David Babbott, MD, and Ginny Walters, PhD (co-founder of PCV). As Ginny writes today (at age 96), “Having MDs who became active in the campaign in the beginning of PCV’s work was really meaningful. Dick Austin wrote really good letters to the editor citing his experience as a physician. He never minced words." The NY Times article quoted Dr. Austin as saying, "I've seen some of my friends here die rotten deaths." He cited the long periods of heavy sedation and misery for terminally ill patients and their families.
Dr. Dick Austin died at the age of 99 this past week.
The New York Times article also included a picture of Dr. Diana Barnard, who spoke passionately about the need for Act 39 in the early days of the campaign. Dr. Barnard continues to serve on PCV’s Board of Directors, as does Dr. Jaina Clough, both palliative care physicians in the UVM Health Network.
We take this moment to honor these doctors.
Throughout PCV’s history, both practicing and retired doctors served on our Board of Directors and Advisory Board, including Dr. Don Robinson, Dr. Charles Gluck, Dr. Stephanie Barnes, and until this past summer, Dr. Fred Crowley, a retired radiologist and past president of the Vermont Medical Society.
Medical aid in dying is now widely available in Vermont.
Dozens of physicians across the state have prescribed medical aid in dying under Act 39. Oncologists and neurologists, along with palliative care doctors, being the specialists who serve the majority of terminally ill patients who qualify under Act 39, have the most experience.
At the same time, many physicians are just now being asked by patients about medical aid in dying for the first time. That is often why it takes several conversations for people who are interested in Act 39 to elicit a commitment from their physician to prescribe. Multiple discussions build trust in the relationship and confidence on the part of the doctor that the patient is making a well-considered and informed decision.
The PCV team crafted our How to Talk to Your Doctor page to help guide you in these discussions. As we describe the persistence often needed, it’s not about being aggressive or demanding; it’s about helping your physician understand how important this option is to you.
Requesting medical aid in dying requires planning. Start early.
In recent conversations with patients on PCV’s hotline, we are seeing that many people wait until it is too late to navigate the medical and legal process of Act 39. People assume that it will be just like requesting any other medical treatment, not realizing that the law requires multiple steps with time in between, and that if their doctor is new to medical aid in dying, multiple meetings may be needed to help them come to the decision to support their choice.
It is also the case that some people delay end-of-life discussions because they want to be focused on living and healing rather than dying. Paradoxically, having end-of-life conversations early can relieve a lot of uncertainty and help reduce fears and concerns. In this way, early conversations about dying are life-giving. We strongly encourage you to share this perspective with anyone who is living with a terminal disease. We are always here to listen and help patients and healthcare providers with Act 39 conversations.
With warm regards,
Betsy J. Walkerman, President
PCV Provides Act 39 Update Programs for Hospice Nurses ...and a special thank you to our terrific volunteers
Many thanks to all of you who made contributions in response to Patient Choices Vermont's (PCV's) Spring Fundraising appeal. With this strong community behind us, we can continue to offer a wide range of educational services and work to streamline Act 39. If you missed our spring communications, you can always donate online or by mail.
Patient Choices Vermont
PO Box 671
Shelburne, VT 05482
ACT 39 UPDATE PROGRAMS FOR HOSPICE NURSES
Patients and families who contact Patient Choices Vermont to learn more about medical-aid-in-dying almost always tell us how important and supportive their hospice nurses (and volunteers!) are. We deeply appreciate all of those who help provide hospice services. During discussions about end-of-life options including medical-aid-in-dying, Patient Choices Vermont always recommends the inclusion of hospice nurses as they are close to the patients, knowledgeable and compassionate, and able to serve as a trusted resource for discussions about end-of-life care and choices.
To support their services and expertise, PCV has been making the rounds to Vermont’s hospice programs to offer an update about what’s happening with Act 39 in Vermont. Here’s what’s included in PCV's 2021 Hospice Training and Update Programs:
If you would like to schedule an educational session for your hospice organization, contact Toni Kaeding MS RN.
Toni Kaeding, MS RN, PCV Board Chair, is a nurse whose work has spanned clinical, academic, administrative, and policy positions in Vermont. She retired from the University of Vermont where she held both faculty and administrative appointments in the College of Nursing & Health Sciences. She was founding Director of the Freeman Scholars Program. In 2012, Toni was named recipient of the Founder’s Award by the Vermont Medical Society. She enjoys cross-country skiing and running and lives at the end of the road with her family in Worcester, Vermont. Toni handles the many calls PCV receives from patients and doctors. She helps educate students and community members.
VOLUNTEER SPOTLIGHT: THE PEOPLE BEHIND THE PCV THANK-YOU NOTES, DATABASE, AND MORE
People from all walks of life are drawn to volunteering with PCV, offering expertise, time and energy.
Barbara Deal: If you have made a contribution to PCV in the past couple of years, you have received a thank-you card from Barbara Deal, a resident of Bristol, VT. Barbara was Director Addison County Hospice in the mid '90's and has a long-standing belief in encouraging people to say what they want the end of their lives to be like. She commented, "It has been an honor to serve PCV in this limited but sincere way. I have two dear friends who chose to use Act 39 and I am full of gratitude to PCV who made their choice possible."
Ann Crocker: Many thanks to Barbara as she now passes this responsibility to Ann Crocker. As Ann says, "It is an honor for me to be able to contribute to Patient Choices Vermont by thanking our donors. Each donation supports the very important work of educating Vermonters so that people who terminally ill are aware of Act 39 and the choice that it offers."
Nancy Hawley: Nancy is a business consultant specializing in business processes, systems, and information and accounting solutions. She has supported various aspects of PCV’s work since its founding in 2002. She recommended, configured and continues to maintain PCV’s supporter database. Her expertise in business data systems helps provide PCV with intelligent information for planning our fund-raising campaigns, and communicating effectively with donors. Thank you, Nancy!
Jonathan Crocker: Jonathan helps fine-tune PCV’s communications, providing editing services and expertise in story-telling for PCV videos. He also tracks donations and keeps the supporter database accurate and up to date. Jonathan says, “I am humbled and inspired by the people whose stories I have encountered in this work; by both their courage and their generosity in sharing such deeply emotional journeys. Like them, I hope these stories help spread awareness of the value of medical-aid-in-dying, and can help others through the experience.”
Congratulations New Mexico!
New Mexico’s new medical-aid-in-dying law just went into effect. Named for Elizabeth Whitefield, a long-time Albuquerque family law judge and attorney who did not live long enough to testify on behalf of the bill in 2019, the new law brings the option of support for peaceful death to New Mexico residents.
New Mexico is the tenth U.S. jurisdiction to enact a death with dignity law.