…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.
"I would like to do anything I can to help Vermonters understand the gift of having Act 39. One of the gifts I'm only now recognizing is that it gave me the ability to grieve before my husband died - and the same for him. For nine months, we spoke only our truth to each other, and flirted, and cried, and found a way to believe that we would not be separated." - Susan G.
Those eloquent words from a grateful supporter made me pause, read them again, and let my heart absorb their full impact. Whenever PCV receives thanks like this, I know how important our work is. Together, we share an effort to be informed and ready to contribute to end-of-life choice discussions with our friends. This year we celebrated the 5th anniversary of Vermont’s Patient Choice law by fostering those discussions and advancing the future of Act 39 on several fronts.
From One to None… to Six Pharmacies!
Since the enactment of Act 39 and until last January, we had just ONE pharmacy in Vermont filling medical-aid-in-dying prescriptions! Then, we learned that the only participating pharmacy would cease filling Act 39 prescriptions as a result of new corporate ownership. For several weeks there were NO pharmacies in Vermont available to fill medical-aid-in-dying prescriptions.
The PCV board immediately established an initiative to achieve pharmacy coverage across the state and by February, we were able to convince the one pharmacy to resume filling prescriptions. Realizing the vulnerability, we began work to add pharmacies to the list and are now at SIX pharmacies ready to serve Vermont’s end-of-life patients - an essential component that helps to solidify Act 39.
No organization but PCV would have addressed this vital pharmacy issue!
We also clarified with Dartmouth Hitchcock Medical Center’s administration that Vermont-licensed doctors in their network who practice in Vermont can indeed assist Vermont patients under Act 39 - a very important development for communities along our eastern border.
2018 was a Year of Big Accomplishments!
Please consider what End-of-Life Choice means to you. Your financial support is what enables our focused and dedicated work.
We Achieved a Major Cost Reduction in End-of-Life Prescription Drugs!
In February, PCV Board Member Dr. Diana Barnard spearheaded an effort to confirm that an effective, lower-cost medication was available. She educated doctors and pharmacists about the specifics, thereby reducing the cost of the drugs to less than 20% of what was previously available. Family members have confirmed the ease and peaceful use of this new option.
In 2018, PCV’s Message Reached Thousands.
Our public outreach touched people across the State and the nation as we honored legislators in Montpelier on the Fifth Anniversary of Vermont’s End-of-Life Choice Law. An interview on VPR’s Vermont Edition, a 3-part feature on NBC’s Channel 5, numerous articles and public forums and the presentation of a one-act play on love, life and dying helped deliver our message.
Medical Community Education and Support:
Step-by-step, we are nurturing the medical community to make medical aid in dying simply another treatment option that doctors routinely discuss with patients nearing the end of life. This year PCV board members had leadership roles in five educational seminars for doctors, medical institutions and conferences. These were important opportunities for professionals to discuss and learn about patient counseling and Act 39. Based on our survey early in the year, over half the hospice organizations in Vermont have now conducted training sessions on medical aid in dying. PCV is frequently called upon for information by doctors and caregivers, as well as patients.
Legislative Leaders Educated:
PCV meets regularly with legislators who chair or serve on House and Senate committees that were vital to the passage of Act 39. We work to educate them on the value of Act 39 and the importance of end-of-life choice to their constituents in order to be prepared in case legal challenges emerge.
Vermont Continues to Have a National Influence:
This year, PCV board members have assisted advocates in other states and testified in New York and Hawaii. Vermont doctors were also influential in the recent policy shift of the American Academy of Family Physicians to a “neutral” stance on medical aid in dying. Each additional state that allows medical aid in dying builds greater support for end-of-life choice within the medical community.
PCV is continually protecting your right to have a choice!
As a community, PCV is successful because we all remain focused, persistent, and dedicated for the long term. We want you to know that every donation is deeply appreciated and carefully managed. Please mail a contribution to:
Patient Choices Vermont
P.O. Box 671
Shelburne, VT 05482
...or donate online where you will see a number of ways to give, including stock donations and gifts honoring people for whom end-of-life choice was important.
It takes almost $60,000 per year to keep Patient Choices Vermont operating!
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 said, 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.
Betsy J. Walkerman