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.
Thanks so much to donors from Randolph, Chester, Shelburne, Springfield, South Burlington, Hinesburg, Ferrisburg, Dummerston, Burlington, Hardwick, Newbury, Peacham, Warren, Salisbury, Underhill, East Thetford, Derby, Greensboro, Norwich, Weybridge, and many other towns.
We are very grateful to all the people who have responded to PCV’s spring fundraising letter with generous contributions. Our education programs and our work to improve Act 39 are possible only with your support. Thank you for making end-of-life choice a priority in your giving.
In the past month, PCV board members have given five educational seminars for healthcare providers and community members around the state. We've been pleased to respond to numerous requests for our brochure, Vermonter's Guide to Medical Aid in Dying, coming from churches, community centers, and hospice organizations.
Our Videos make up the most popular page on our website.
As one donor recently wrote, “The video of a woman going through the actual process of using Act 39 gave me a lot of reassurance. Keep up the good work!”
People have had a particularly powerful response to our video of Karen Oelschlaeger. Karen was extremely grateful for medical aid in dying and chose to be an advocate even in the last week of her life when she spoke to a reporter from VPR. The recent Vermont Public Radio story powerfully framed the struggle that certain parts of the Act 39 process have on people seeking aid in dying.
“I am always deeply impacted when I hear of someone whose end-of-life was made better by their having control at the end. I am eternally grateful to Karen and her family for sharing her story and her words in the recent VPR interview to help others have a better path as they near the end of their lives.” - former Lieutenant Governor David Zuckerman (PCV Advisory Board Member)
May 20th was the eight-year anniversary of Act 39. Let us know that you're celebrating by making a donation of $88, or $888, or perhaps a multiple of $8, such as $48, or $96…be creative!
Many thanks, and happy spring!
Betsy Walkerman, President
Patient Choices Vermont
“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 Dec., 2020
When we heard Duncan’s words, we were more convinced than ever that we have to work hard for patient-focused improvements to Act 39.
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. The Act 39 process also requires that two separate requests to use Act 39 be made at least 15 days apart — in the physical presence of the doctor.
“I could not wait to get through that timeline. Removal of that [in-person] requirement would be a huge relief.” - Karen Oelschlaeger
Karen was 37 years old and dying from stomach cancer. You can hear the pain and frustration in her voice on the PCV video as she describes the arduous process of traveling to required appointments.
We’re on it. Let’s tune up Act 39.
At PCV’s urging, Senate Bill S.74 was introduced in February, 2021 to make three important improvements to the law:
— First S.74 would adjust the timeline to eliminate the final 48-hour delay.
This change would be a huge relief for people like Dee Allen. Dee’s health was deteriorating so quickly from a devastating neurological disease that she feared she would lose the ability to self-administer the medication while waiting the last 48 hours before the prescription could be written. As she expressed in her video on PCV’s website, this period seemed to have no purpose and caused needless suffering.
— Second, S.74 would enable people to make their Act 39 requests via telemedicine.
This change would remove a tremendous burden for people like Karen, for whom an hour-long ride to an appointment was a nightmarish experience.
—Third, S.74 would correct a technical deficiency in the immunity clause of Act 39.
Act 39 currently provides legal immunity only for doctors. Access to medical personnel and pharmacists would be more consistent and predictable if legal immunity were explicitly spelled out for everyone involved in the process.
When Act 39 was created, legislators placed great weight on preventing improper use of the law. The current process includes five qualification requirements, an eight-step process including certification by two doctors, and full documentation. (PatientChoices.org/act-39-overview) Now, with eight years of experience and zero reports of abuse, it’s time to listen to the people who the law is intended to serve and make proper use of the law less onerous for dying people. The next year will be critical for our work on S.74.
Patient Choices Vermont is the only Vermont organization focused on the rights of people who want the option of medical aid in dying.
Successful legislative work requires time, effort and, frankly, money.