Today we mark the seventh anniversary of Vermont’s End-of-Life Choice Law (Act 39).
The signing ceremony was the culmination of many years of work.
Since 2013 countless people have benefited from having greater choice and control near the end of life. Vermont’s example has been followed in California, Colorado, Hawaii, D.C., New Jersey and Maine so that now 23% of Americans have access to medical aid in dying.
Here in Vermont, we successfully fought off early legislative attempts to weaken Act 39 and a major lawsuit challenging the law. Patient Choices Vermont (PCV) has been instrumental in educating doctors, nurses, hospice organizations and the public. Whereas in the early years, many of the calls to our hotline were from people desperate to find a prescribing doctor, today there are many doctors who know the process, assist their patients, and coach their colleagues who may be working under Act 39 for the first time.
Recently we've been so pleased to be contacted by a number of patients, physicians and hospice workers along the Connecticut River Valley, from Brattleboro to White River Junction and Norwich who are successfully navigating the process. Just a few years ago patients in these areas were mostly calling to report that they couldn't find doctors to assist them through the Act 39 process. Today some of the calls are from doctors who are prescribing, from doctors who are in the Dartmouth Hitchcock network but practice in Vermont serving Act 39 patients, and from hospice workers who are facilitating the process. We are also pleased that the compounding pharmacy in Rutland, a primary supplier of Act 39 medications, is personally delivering state-wide so that patients meet the pharmacist and receive instructions.
Despite this progress, a great many Vermonters do not yet know that Act 39 exists. It is still unusual for doctors who are caring for the terminally ill to inform their patients about medical aid in dying, unless the patient asks. Only then, do most doctors begin to learn the details of the Act 39 process. This is why it's vital for Patient Choices Vermont to continue educating individuals, communities, and their medical professionals.
We want to thank all of you who have shared PCV information with your neighbors and helped us organize educational sessions.
In this time and with so many other pressing community needs, we are postponing our usual spring fundraising activities until the fall. Nevertheless, if you feel inspired, please support Patient Choices Vermont with your contribution.
As always, we are here if you or your friends need our advice or assistance.
With best regards,
Betsy J. Walkerman, President
Diana Barnard MD and Jaina Clough MD spoke to a standing-room-only crowd on the topic of “Act 39, MAID in Vermont: A Clinician Update” at UVM Medical Center’s Davis Auditorium on February 28. 2020.
Nearly 200 physicians and other medical staff from the UVM Health Network arrived to hear their two colleagues present “Grand Rounds.”
Dr. Barnard and Dr. Clough reviewed national trends, state data, and practical clinical information on the topic of medical-aid-in-dying (MAID), including evolving drug protocols and available pharmacies. The current number of people in Vermont who have requested and qualified for the terminal prescription since 2013 when Act 39 became law, is 87. The majority of those individuals suffered from cancer.
Dr. Barnard, who attended the first ever National Clinicians’ Conference on MAID in California in February, reported on the clinical experience and research on medications occurring across the country. The conference concluded by moving forward with the establishment of the "National Academy of MAID," which will work to promote excellence in end-of-life care including promoting education and collaboration around MAID. While it is not yet fully formalized, Dr. Barnard will serve on what will most likely be called the Academy's Development and Advisory Committee.
Dr. Clough recognized local authors Kara K Landry MD, Janet Ely APRN, and Alissa Thomas MD for publication of their article, “Experience and Attitudes Regarding Medical Aid in Dying, Act 39, Among Vermont Specialty Practices”. The article appeared in the Journal of Palliative Medicine, October 2019 and substantiated the position that MDs want more information on the topic.
Following their presentation of factual information, the duo turned their attention to how physicians respond to patient requests for MAID and role-played various scenarios for the appreciative audience. The number of questions and comments generated by this activity suggests that physicians consider MAID a topic worthy of ongoing discussion and learning. While no physician is required to participate in Act 39, it is comforting to know that facts and understanding will inform that decision.
The number of medical professionals attending represents a big increase from previous workshops, signaling improvement in future access to knowledgeable doctors for patients seeking to explore medical aid in dying.
Dr. Clough, is board certified in both Internal Medicine, and as a Hospice Medical Director. Dr. Barnard is a Family Practice doctor, board certified in both Hospice and Palliative Care, and also as a Hospice Medical Director.
We are pleased to share information with Vermonters in the Montpelier region at a free educational discussion about medical aid in dying co-hosted with Capital City Grange.
Betsy Walkerman, President of Patient Choices Vermont will present "Your Options, Your Autonomy at End of Life" from 5 - 6 PM on Saturday, February 1. Please join us at this informative opportunity.
Learn, Ask questions, and Share Stories
Learn about Medical Aid in Dying (MAID) at a panel discussion at 5 PM on Tuesday, January 28 at the University of Vermont’s Medical Education Pavilion, Larner Classroom, Room 100.
Join us in Castleton, Vermont on December 3
Healthy Democracy: Act 39, Proposition 5, and “Tenth Power” Political Activism
Tuesday, December 3, 2019 from 2 - 4 PM
Act 39 – Death with Dignity and Medical Assistance in Dying
Proposition 5 - “an individual’s right to personal reproductive autonomy is central to the liberty
and dignity to determine one’s own life course.”
Betsy Walkerman, President of Patient Choices Vermont
Lucy Leriche, Vice President of Public Policy Vermont, Planned Parenthood Northern New England
Stephen Kiernan, Author/Journalist, Health Care Advocate.
Lt. Governor, David Zuckerman
Hoff Hall Conference Room is located at Castleton University, 360 South Street in,Castleton, Vermont.
Professor Joe Markowski with any questions
These are the words that a grateful supporter used to describe her husband’s death with medical aid in dying. The couple’s minister, who was also present, described it as “a quiet natural moment.”
Patient Choices Vermont (PCV) never advocates for anyone to choose medical aid in dying. We advocate for your civil right to make that choice, to request the proper medication and to receive it. By sharing the stories of people who have used Act 39, we help others understand that medical aid in dying is peaceful and natural.
Over the past month, PCV board members and volunteers have been in Newport, Barre, Hanover, Putney, Brattleboro and Burlington giving presentations and listening. We heard from medical personnel who are just now receiving their first requests for aid in dying. We heard from hospice workers about how comforting their patients find it to know they can choose when to end their suffering from a terminal illness. We heard from young, healthy people that they are grateful to live in a state where aid in dying is legal. These ongoing statewide discussions about medical aid in dying also generate important dialogue about advance directives, patient decision-making and end-of-life care.
All this is happening because of your support in helping to establish Vermont’s Act 39, our medical aid in dying law, and because of our work together to provide education and facilitate access.
Despite our efforts, many Vermonters still do not know that Act 39 exists. Healthcare providers do not typically inform patients with a terminal illness about their legal rights to medical aid in dying—unless the patient asks. It is vital for all of us to continue the work of meeting in communities, educating medical professionals and supporting individuals who are learning about aid in dying for the first time.
The PatientChoices.org website provides the most comprehensive set of resources on medical aid in dying in Vermont. We are the only Vermont organization that provides hotline support to both doctors and patients. We frequently hear from PCV supporters like this Vermonter who confirms that our videos make a difference:
“I watched every video on the PCV website. It gave me great comfort and knowledge about what to expect as my husband and I navigated the Act 39 process.” -- C.H.
In addition to hosting educational sessions around region and PCV Resources online, in 2019 we:
A recent study by three UVM doctors confirms that most Vermont doctors want and need more education on Act 39. PCV is pleased to be cooperating with the UVM Dana Medical Library on our first 2020 program, a speakers’ panel for doctors and medical students.
A threat on the horizon:
At the national level, medical aid in dying is under serious attack. Senate Bill 1993, ironically called the Patient Rights Act, would make all state laws allowing medical aid in dying illegal. It's disappointing to see disability advocates adding fuel to the fire by claiming that safeguards contained in aid in dying laws are ineffective.
Our best defense against misinformation, biases and harmful legislation at the federal level is our own sound and sensitive use of the law in Vermont and in the other states that provide end-of-life choice. PCV’s work remains vital.
Every donation of any size is deeply appreciated and carefully managed. We campaign for your financial support only twice a year. Please visit our donation page where you will see several ways to provide your support, including stock donations or gifts in honor of anyone for whom end-of-life choice was important.
PCV is a 501(c)(3) non-profit. Your contributions are tax-deductible.
Please consider contributing $30, $60
...if you can $125, $500, or $1,000.
Or mail your contribution to:
Patient Choices Vermont
PO Box 671
Shelburne, VT 05482
Thank you so much for your dedicated support. As one supporter wrote, “Act 39 allows us to replace fear and uncertainty with a sense of calm, greater peace and comfort near the end of life. Thank you.”
The public is cordially invited to attend a free community discussion to learn more about Vermont’s medical-aid-in-dying law, Act 39 which enables adult, state residents who are facing a terminal illness to obtain a prescription allowing them to choose their time of death.
On Monday, September 30, from 5:30 to 7:00 pm, Putney Community Cares, Inc., Patient Choices Vermont, and Brattleboro Area Hospice will co-sponsor Your Options, Your Autonomy, at End of Life. The discussion will take place at the Putney Meadows Common Room, 17 Carol Brown Way in Putney and will be led by Diana Barnard, M.D., Betsy Walkerman, Esq., and Susan Gillotti. Attendees are invited to engage in a life-affirming and empowering discussion - ask questions, find answers, and share stories.
Dr. Diana Barnard, M.D., is a Palliative Care physician at UVM Medical Center and on the Board of Patient Choices Vermont (PCV); Betsy Walkerman is President of PCV; Susan Gillotti is an Advisory Board member with PCV whose husband used Medical Aid in Dying (Act 39). Information on medical aid in dying and Vermont’s Act 39 are available at www.PatientChoices.org.
RSVP to reserve your seat by emailing info@PatientChoices.org.
Putney Community Cares is dedicated to building and maintaining a vital, healthy Putney community by strengthening family and community bonds. They foster wellbeing and independence of all members of their community, from newborns to seniors; 802.387.5593; www.putneycommunitycares.org
Brattleboro Area Hospice (BAH) is an independent, non-profit organization that provides non-medical support to dying and grieving community members and volunteer-staffed assistance with Advance Care Planning. BAH is 100% locally funded, provides services free of charge, and is located at 191 Canal Street in Brattleboro. 802.257.0775; www.brattleborohospice.org.
We are pleased to help publicize this upcoming event hosted by The Northeast Kingdom Palliative Care Initiative.
PCV board member Dr. Diana Barnard and Peggy Stevens, who is featured in PCV videos, will be among the speakers.
Date: Friday, Sept. 13 from 11:30 AM to 2:30 PM
Location: Eastside Restaurant , 47 Landing Street on the shore of Lake Memphremagog in Newport, Vermont
This seminar will explore the physical, emotional, and spiritual suffering that may accompany the end-of-life journey and choices that patients might pursue to end this suffering. Come prepared to learn about how to listen and how to respond to requests to hasten death – What is the dying person really asking? What are the ethical and legal options to stopping treatment or nutrition? This seminar is appropriate for healthcare professionals of all disciplines and of all levels, as well as educators, social workers, clergy members, interested community persons, and anyone involved personally or professionally with the care of the seriously ill.
Registration required by Monday, September 9, 2019
(click above for a brochure with mail-in registration form PDF)
or send a check for $15 (includes lunch) made payable to
Northeast Kingdom Palliative Care Initiative, Inc. and mail to:
Lyne Limoges, MSN, RN
Orleans Essex VNA & Hospice
46 Lakemont Road
Newport, VT 05855
Please include the following information with your registration:
Patient Choices Vermont (PCV) will be among the exhibitors at Age Well's Senior Day on Tuesday, August 27.
We encourage you to visit with us on this special day of the annual Champlain Valley Fair, an event which typically welcomes more than 300 Vermont seniors to enjoy a luncheon (now sold out), live music, and all-day access to the fairgrounds. Adults age 50 or older will save $3 off their admission ticket with I.D. at the gate – Valid only on Senior Day.
We look forward to talking with visitors who stop by our onsite exhibitor's booth where we will also provide a collection of PCV's valuable printed resource materials on end-of-life options and Vermont's Act 39. The event is located in the beer tent within the fair grounds. The Champlain Valley Fair lists the beer tent as #5 on the official map, not too far from the Red Gate.
…that’s up from 13 million when Vermont’s Act 39 was passed.
Our persistent work in Vermont to make sure people have access to end-of-life choice is having an impact across the country. Nine jurisdictions have medical-aid-in dying laws providing end-of-life choice. Maine may soon become the eighth, having just voted to approve the Maine Death with Dignity Act. Twenty-four more states are considering the legislation.
In their order of adoption, these seven include: Oregon, Washington, Vermont, Colorado, California, Hawaii, and New Jersey plus the District of Columbia.
In 2009, Montana’s Supreme Court ruled that nothing in the state law prohibits a physician from honoring a terminally ill, mentally competent patient’s request by prescribing end-of-life medication. There have been bills introduced both for and against but none have yet been passed into law.
Impact on End-of-Life Care:
Since so many more people can now choose medical aid in dying, medical personnel and educators are paying increased attention to end-of-life choice and to counseling patients facing serious or terminal illness. Yet this is still the exception, not the rule. Several recent books delve into the problems patients face when the medical system assumes that extending life with more tests and more procedures is always the right approach. We provide a growing list of these books as well as Book Reviews online.
While reading these books, you can’t help but begin to ask how would I make decisions differently to avoid spending my last months in medical procedures? Or, what is most important to me and how can I make my remaining time meaningful? The PCV team researched what resources are available to help us navigate medical decision-making. It was a complete surprise that we did not find a succinct resource for patients. So, we developed our own.
We are pleased to introduce PCV’s new
Pocket Guide to Medical Decision-Making
This fold-up pocket guide is intended to be a concise reminder of the important questions to ask and information to convey to your medical and care team. Feel free to request bulk copies to distribute within your community. A one-sheet PDF flyer version is also available for download.
In most of the community meetings we have hosted, people ask us whether they can direct the use of medical aid in dying in advance, specifically in the case of dementia or Alzheimer’s. The short answer is no. However there are steps you can take to help avoid prolonged life with severe dementia. We address that issue in another recent publication, The PCV page with the Guide to Advance Care Planning for Dementia also provides a link to an addendum you can add to your own advance directives.
We truly appreciate hearing from PCV’s supporters like this Vermonter who confirms that the video stories we produce make a difference:
“I watched every video on the PCV website. It gave me great comfort and knowledge about what to expect as my husband and I navigated the Act 39 process.” -- C.H.
Your PCV team continues to work on developing more informative publications and videos as well as providing community programs and medical education. The team includes doctors, nurses, writers, lawyers, researchers, and people with medical-aid-in-dying experience.
We have a number of programs scheduled for the fall. If you would like to keep up to date, please sign up for our email newsletter.
We only do fundraising twice a year, so this is our spring appeal...
Please consider what End-of-Life Choice means to you.
Your financial support is what enables our focused and dedicated work.
As a community, PCV is successful because we remain focused, persistent, and dedicated—in it for the long haul. Every donation you provide, of any size, is deeply appreciated and carefully managed. There are several ways to provide your support, including stock donations and gifts honoring people for whom end-of-life choice was important.
We are a 501(c)(3) non-profit, so your contributions qualify as tax-deductible.
Please consider a donation of $60, $30 or if you are able, $125, $500, or $1,000.
As one supporter recently says, “Act 39 allows us to replace fear and uncertainty with a sense of calm, greater peace and comfort near the end of life. Thank you.”