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.”
Perhaps you came across the May 13, 2019 opinion piece in the New York Times entitled, "Can Doctors Refuse to Treat a Patient?" which goes on to answer its rhetorical question with, "The Trump administration says they may, if treatment would violate their religious views."
The Times article discusses a proposed new federal rule from the US Dept of Health and Human Services. We want to take this opportunity to confirm that…
The proposed new rule will change nothing here in Vermont regarding Act 39.
PCV watches for rules like this in case there is action that needs to be taken.
Background: Since the 1970's numerous laws have been adopted that enable medical professionals to decline to provide specific medical services including abortion and medical aid in dying. These laws were adopted under both Republican and Democratic administrations. The new proposed rule would give stronger enforcement capability to the Office of Civil Rights of the US Dept of Health and Human Services. In other words, medical professionals who have religious or moral objections to providing certain kinds of services will have a strong ally in the US government to help them avoid any consequences from refusing to provide services that conflict with their beliefs.
Act 39: Vermont’s Act 39 already makes it voluntary for physicians to prescribe medical aid in dying for patients. Therefore, the proposed new rule would have no impact.
Federal Laws Relevant to Act 39:
Alarming Nevertheless: The proposed rule is focused on abortion, but it also relates to medical aid in dying and contraception. Certain definitions may be expanded to allow less coverage for women’s health by insurers and employers. The rule is alarming because it puts doctors’ beliefs ahead of patient needs with the result that patients have to be even more vigilant to make sure that they learn of all their options and are prepared to advocate for their health care needs.
A good in-depth analysis is provided by Health Affairs journalist Katie Keith in "Trump Administration Prioritizes Religious and Moral Exemptions for Health Care Workers."
Today we are recognizing National Healthcare Decisions Day, intended to empower and inspire people to prepare or review their advance directives. An advance directive, sometimes called a living will, is a legal document that outlines your health care preferences in the event that you become unable to make or communicate those choices. As part of the document, you choose a person, your “health care agent,” who will advocate for you during times when you so not have decision-making capacity.
We frequently receive questions about advance care planning and Act 39 (Medical Aid in Dying) in the context of dementia or severe cognitive decline. People ask us whether they can direct the use of medical aid in dying in advance, specifically in the case of dementia. The short answer is no. However there are steps you can take to help avoid prolonged life with severe dementia.
PCV Welcomes New Jersey
New Jersey Governor Murphy last week signed New Jersey’s medical aid in dying law, which is similar to Vermont’s Act 39. New Jersey is now the eighth State and ninth jurisdiction to authorize medical aid in dying. Momentum is building in large part because of successful experience in Vermont and the other states that allow medical aid in dying. When populous states like New Jersey are added to the list, we get a step closer to aid in dying and end-of-life discussions becoming a normal part of end-of-life care. More doctors will learn to guide patients through these decisions, and medical curriculum will increasingly address the training needs of medical professionals. Every time we in Vermont talk to our doctors, our neighbors, to friends in other states, we advance acceptance of end-of-life choice.
We receive a variety of messages from our supporters that let us know our work has had a significant impact on their lives. Here's a recent example:
"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." ...from a recent thank-you note.
One of the most-watched videos (with over 500 views) is that of Peggy and Samantha Stevens in our Living While Leaving series, sharing their loving memories of Eric Stevens during his journey using medical aid in dying.
On Sunday, April 7, Peggy Stevens spoke at the Universalist Unitarian Congregation in St. Johnsbury. A warm and engaging speaker, Peggy shared her personal experience during the time when her husband Eric's health was declining from a neurological disease. She discussed how they had to make a transition from looking for cures to planning what they hoped would be a peaceful death. Peggy's story is about living life fully while accepting the inevitable end of life.
Report from the Field:
During this past week, PCV representatives Dr. Diana Barnard, Betsy Walkerman, Francesca Arnoldy and Marnie Wood led and participated in discussions at two public forums. Dr. Barnard discussed hospice and palliative care at the Gerontology Symposium hosted by the Center on Aging at the University of Vermont. Francesca Arnoldy led breakout sessions on the role of an end-of-life doula.
"I was able to discuss the process of Act 39 as I described the kind of emotional support a doula can offer," says Francesca. "Focusing on individual choice is paramount as a doula assists with gathering information so clients can make their best decisions."
Marnie Wood reported that attendees appreciated the PCV brochures and the chance to talk with people who have been through medical aid in dying with a family member. In the circle I led, as part of Death Talks during Public Philosophy Week, a major topic raised by attendees was how to support people who do not want to linger with severe cognitive decline. We will be posting more information about that on the PCV website soon.
Our Upcoming Work:
PCV speakers will be leading two discussions in the next month. One will be at the Caldwell Law Group in Lebanon, NH, which serves Vermont and New Hampshire clients with estate and end-of-life planning services. The other event is intended to provide information on Act 39 to the Brown Alumni Association of the Upper Valley. Sorry, but both of these are private engagements.
If you are connected with an organization that would like to have a discussion about medical aid in dying, please contact us. These discussions are about life, making decisions, establishing connections, and about personal autonomy in navigating the challenges to your fundamental civil liberties. Every person who learns about end-of-life choice and talks about it with their doctor, helps to anchor this civil liberty firmly in our Vermont community.
Hosted by Wishbone Collective and Patient Choices Vermont
UVM's 3rd Annual Public Philosophy Week was first launched in 2017 to bring discussions out of the academy and into the public square. New in 2019, is a series of seven discussions on death and coping with grief, organized by UVM alumnus Alexandria Kerrigan, a recent graduate of the university's End-of-Life Doula Program.
The Death Talk Philosophy Week series begins on Sunday, March 24 at 2 pm with Krista Beth Atwood, former pastor of the Faith United Methodist Church in South Burlington, leading off with "Is there Life Without Death?" There are seven daily events at various times, covering a diversity of death topics featuring different speakers including Betsy Walkerman, president of Patient Choices Vermont, on Tuesday, March 26 from 6-7 pm leading a discussion on "ACT 39 and Death with Dignity."
Join us for seven days of Death Talks during Public Philosophy Week at the Wishbone Collective!
Death Talks provide a safe place for open dialogue and the philosophical exploration of themes such as mortality, the afterlife, spirituality, cultural practices, history, individual experience, and more. Death Talks is not a personal support group nor a counseling session.
Wishbone Collective is located at: 4 West Center Street, Winooski, Vermont