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.

​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:

• published our Pocket Guide to Medical Decision-Making,
• added the PCV Guide to Advance Care Planning for Dementia to our website,
• expanded the Board of Directors and the Advisory Committee to include additional doctors, lawyers and individuals with Act 39 experience,
• and collaborated with the Dana Medical Library at the UVM Medical Center on presenting an upcoming, three- month-long, featured display of educational materials on aid in dying.

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.

…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.

Medical Decision-Making: 
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.

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.

Dementia Directive: 
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.

Community Work:
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...

​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:
 

1. Assisted Suicide Funding Restriction Act of 1997 This law says that federally funded health centers, of which we have several in Vermont, are not permitted to pay for services related to medical aid in dying. As a result, for example, patients of the Veterans Administration who want medical aid in dying would have to find and pay for a private doctor for this service. This has been the case since Act 39 was enacted. The new proposed rule changes nothing.
2. The Affordable Care Act (ACA) includes a provision preventing institutions that receive federal funds from discriminating against employees who refuse to participate in medical aid in dying. Since Act 39 states that participation by medical personnel is voluntary, the ACA provision has no impact. The new proposed rule changes nothing.

 
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.

Watch:
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.
 
Speaking Engagements:
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. 

"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.
 
Dear Friends:
 
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.

​Patient Choices Vermont surveys candidates for statewide and legislative positions.

• For information on where and how to vote in Vermont, click here.
• Visit the Vermont Secretary of State’s voter page to find out your voter registration status, what district you live in and more.
• Then find your legislator with this Vermont District Map, or this Text-based Search. 
• VPIRG’s Tools for Democracy project provides further details on all of the candidates for Vermont office in the 2018 election: links to their website, Facebook page and Twitter profile if they have one.

Then, check on the results of PCV's Candidate Survey (508 KB PDF) which asks, "Are you inclined to oppose or support efforts to restrict or repeal Vermont's medical-aid-in-dying law (also known as "Act 39" and "Death with Dignity)?" Candidates who would vote to keep Act 39 in place answered with "OPPOSE" whereas candidates who would vote for restrictions or vote to repeal Act 39 answered "SUPPORT." A blank space means the candidate did not respond.

​We have also posted the guide in Scribd below. If it appears too small to read, scroll to the bottom and click on the Fullscreen icon (right side), then scroll to find the candidates from your district.

We have data for many, but not all candidates. If they didn't respond to our online survey and have no voting record on this issue, the line is left blank. If you know a candidate who hasn't responded, please ask them about their position and suggest that they contact PCV so that we can add their data to the table below. 

Please note that in our survey "OPPOSE" answers are from candidates who would vote to keep Act 39 in place, whereas "Support" answers are from candidates who would vote for restrictions or repeal.

​On Tuesday, October 9, 2018 delegates of the American Academy of Family Physicians (AAFP) approved a substitute resolution to adopt a position of "engaged neutrality" toward medical aid in dying as a personal end-of-life decision in the context of the physician-patient relationship.

AAFP President Michael Munger, M.D., of Overland Park, Kansas says, "The action taken today allows the AAFP to advocate for engaged neutrality on this subject at future AMA House of Delegates meetings. Through our ongoing and continuous relationship with our patients, family physicians are well-positioned to counsel patients on end-of-life care, and we are engaged in creating change in the best interest of our patients."

This stance puts them at odds with the American Medical Association (AMA) Code of Ethics which states: “Instead of engaging in assisted suicide, physicians must aggressively respond to the needs of patients at the end of life.”

The substitute resolution also calls on the AAFP to reject use of the phrase "assisted suicide" or "physician-assisted suicide" in its own formal communications and to direct the Academy's delegation to the AMA to promote the same action in the House of Delegates.

"We have to understand the power of family physicians," he said. "We have an ethical, personal role in our patients' lives. We can't be opposed to something that some people think is valuable. I think we have to have a more neutral stake in this difficult area. We have to understand the power of family physicians," says Arnold Pallay, M.D., AAFP delegate from Montville, New Jersey.

The Vermont Medical Society (VMS) has already adopted a neutral position on medical aid in dying, in recognition that it is legal in Vermont and that many Vermont doctors and their patients have already participated in the Act 39 process. The VMS policy may be found at http://www.vtmd.org/sites/default/files/2017End-of-Life-Care.pdf.  

We understand that Vermont doctors participated in the AAFP meeting and urged adoption of the new policy.

“As prominent national organizations like AAFP recognize the legitimate and very personal nature of a decision to use medical aid in dying, we will increasingly solidify end-of-life choice and the comfort it provides, “ says Betsy Walkerman, President of Patient Choices Vermont.  “We are pleased that Vermont’s careful and measured approach to medical aid in dying is contributing positively to changes like this on the national level.”

In recognition of Legislators and Act 39 Supporters PCV hosted a reception at the Statehouse in Montpelier on May 16, the 5th Anniversary of the enactment of Vermont's End of Life Choice Law.

Five years ago, Vermont made history as the first state to adopt an end- of-life choice law through legislative action after more than a decade of research and debate. On May 16, 2018 the public was invited to the Statehouse in Montpelier to hear Lt. Governor David Zuckerman and other legislators and families with Act 39 experience speak in recognition of this important anniversary. Vermonters regularly express their gratitude for Vermont's Act 39, which provides mentally competent adults who face an impending death from terminal illness with the freedom to choose medical aid in dying. 

This reception provided an opportunity for families and friends who have had experiences with Act 39 to express their gratitude and tell their stories to the legislative and community leaders who made medical aid in dying possible in Vermont.