Vermonters reflect on five-year anniversary of the state's Medical Aid in Dying law.
Tom Ozahowski, is shown walking on a wooded trail near his Thetford home. He made his career at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire where he worked with patients who often stared death in the face.
"People have cardiac arrests and have near death experiences that, it's not everybody, but some of them have had profound situations that have helped me," he said those situations have helped him find peace with his fate.
"I was diagnosed in 2008," Ozahowski said regarding his prostate cancer, which has spread to his bones. "I have no idea exactly whats in store."h
The one thing he does know is how he plans on dying.
"My sons are totally in agreement that I can use Medical Aid in Dying and get a prescription to be self-administered," he said.
Dr. Diana Barnard, with the University of Vermont Medical Center, would like to see more Dartmouth-Hitchcock doctors on board.
The palliative care specialist said most of her patients worry about losing their sense of control, something many wish to gain using Act 39.
"Most people that I talk to don't want to die. They want to live, but they are dying from their underlying illness and we cant stop that," Board Member Dr. Diana Barnard said.
In the past five years, the state's Department of Health said 52 people have qualified to utilize the law, but only 29 people have chosen to end their lives.
"The law itself was really carefully crafted and is working very well," said PCV President Betsy Walkerman, also featured in the story.
Click to Watch the Story...
A Finished Heart by Eliot Cherry
PCV sponsored the presentation of an intimate one-act theater production as part of the recognition of the five-year anniversary of Vermont’s End of Life Choice Law (Act 39). We brought author, composer, and actor, Eliott Cherry here from Oregon to present his deeply personal story of love, life, and dying.
The three, hour-long performance, staged from May 17-19, 2018 brought audience members in touch with the universal experience of dying, amid humor and loving conversations at the Unitarian Universalist Congregation in Norwich, at the Shelburne Town Hall, and at Chandler Center for the Arts in Randolph.
Eliott's performances prompted conversations about care giving, personal choices, and fundamental human connections. Each performance was followed by a discussion session, and PCV provided information about Vermont’s End of Life Choice Law (Act 39).
Dr. Diana Barnard appearing before the New York State Legislature's hearings on medical aid in dying.
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.
A few weeks ago, just by chance, one of the doctors on the Patient Choices Vermont (PCV) Board of Directors discovered that the sole pharmacy in Vermont that had previously been filling prescriptions for medical aid in dying under Act 39, was directed by their new corporate owner to stop providing this service.
So, you may ask, why did they receive this directive?
The new corporate owner of the Marbleworks Pharmacy in Middlebury was just being cautious. Since laws like Act 39 are available only in a handful of states, they needed to understand the law. PCV contacted the corporate executives at the top level, and we were able to provide the information they needed. As a result, Marbleworks is now once again supplying the drug that has been the most used under Act 39.
I realized during these communications that no other organization or state agency had the responsibility or would have taken the initiative to reverse this situation. Patient Choices Vermont is the one organization that is making sure that Vermonters have practical access to medical aid in dying. We are proud and relieved to have averted what could have been a crisis for patients.
You may have heard that the drug that has been primarily used for medical aid in dying is very expensive. That's true. The Seconal prescription costs $3,700. This is because there is only one supplier worldwide and the demand is low, so there is no incentive for competitors to enter the market to help bring the price down. The good news is that a new drug formula, called DDMP2, has now been used extensively for medical aid in dying in California, which has a law similar to Act 39 and far more patients than we have in Vermont. DDMP2 costs $700. This drug requires a compounding pharmacy to dispense it, so we located a pharmacy in Vermont that will do so - the Rutland Pharmacy.
PCV has launched an intensive effort to increase the number of pharmacies who are able to fill prescriptions for both of these medications. We are calling both regular and compounding pharmacies, educating pharmacists about Act 39, and working to establish more locations that will be prepared to supply both drugs.
If you or a friend are discussing medical aid in dying with a doctor, we would highly recommend that you ask the doctor to call us. We can put doctors in touch with experienced medical colleagues who can discuss clinical matters, dosages, instructions and what pharmacies to use. This is a relatively new part of medical practice, so it is important for doctors to check up on the most current information, even if they have prescribed before.
We really appreciate your interest in being part of the communication network on these issues. To be sure, medical aid in dying is just one option in a spectrum of choices that any given person might make toward the end of life. It's important, from PCV's perspective, that all Vermonters have the opportunity to learn about their medical options and their care options, and to choose what will be most self-affirming for them.
Vermont Edition's reporter Jane Lindholm and producer Matthew F. Smith say, "It's been four years since Vermont started allowing terminally ill patients to seek the help of a doctor to end their own lives. We're looking at how patient choice at the end of life is working in our state, and how Vermonters have used the program since it began in 2013.
Betsy Walkerman, president of Patients Choice Vermont, joins the program to discuss how Act 39 has been utilized in Vermont, and what she hears from people choosing this method of end-of-life care. And Ed Paquin with the Vermont Coalition on Disability Rights shares his concerns about the law, especially as it pertains to perceptions of people with disabilities.
Also joining the program is Dr. Robert Tortolani, a retired physician and a former president of the Vermont Medical Society, to discuss how physicians talk to their patients about this issue, and why the society dropped its formal opposition to the law in November.
We'll also hear from Vermont performer Rob Mermin, who shares his story of helping his friend Bill Morancy hasten the end of his life in 2015.
Click to listen to the full one-hour broadcast...
Patient Advocacy Groups Welcome Federal Court Ruling Clarifying that Consent Agreement About Doctor-Patient Conversations “Does Not Represent” Court’s Views
Groups Emphasize Vermont Law Still Requires Doctors to Inform Patients of All End-of-Life Options, Including Medical Aid in Dying
Two patient advocacy groups today welcomed a federal judge’s ruling that the Vermont Attorney General’s consent agreement with physician plaintiffs “does not represent” the court’s views in a dismissed lawsuit that sought to weaken the doctors’ duty to inform patients about all of their end-of-life care options.
The two organizations, Compassion & Choices and Patient Choices Vermont, emphasized that this ruling leaves intact a doctor’s duty to obtain informed consent from patients by providing all their end-of-life medical options.
The groups intervened in the suit and filed the motion to strike the consent agreement from the court record because it caused confusion about physician obligations to patients under Vermont law, including the 2013 Patient Choice at End of Life Act (Act 39). The law gives mentally capable, terminally ill adults in Vermont the option to receive a doctor’s prescription for medication they can decide to take to end unbearable suffering and die peacefully in their sleep. The plaintiffs’ misrepresentation of the court’s dismissal of the case only worsened this confusion.
In his Dec. 18 ruling, U.S. District Court Judge Geoffrey W. Crawford concluded:
“The agreement does not represent the views of the court on the merits of the parties' dispute … The consent agreement is a purely private agreement-not a judicial ruling-and not subject to review on appeal. But it is far from inconsequential and maintaining it on the court's docket has value in informing the public of the terms of the settlement struck by the parties.”
“Judge Crawford’s original ruling dismissed the plaintiffs’ case for lack of standing, but then the plaintiffs and the Vermont Attorney General’s office entered into a private consent agreement that contradicted the plain language of Vermont law,” said David Bassett, of WilmerHale, co-counsel on behalf of Compassion & Choices, Patient Choices Vermont and two Vermont patients, Benedict Underhill and Monica van de Ven (who died peacefully in January by utilizing Vermont’s Patient Choice at End of Life Act). “Absent the clarification we obtained this week, physicians could have mistakenly believed it was acceptable for patients to make critical medical decisions without being informed of what their real care options are at the end of life.”
“The plaintiffs have wrongly claimed victory in a case they lost, so we are happy that the court has set the record straight,” said Kevin Díaz, national director of legal advocacy for Compassion & Choices. “We still believe the agreement the state reached with the plaintiffs was unnecessary. We will be watching carefully to ensure that physicians fulfill their duty to fully inform terminally ill patients about all their end-of-life care options and the Attorney General’s office enforces the law.”
“The Vermont legislature was very clear in Act 39 and in our Patient’s Bill of Rights for Palliative Care and Pain Management that patients are required to be informed of all available options near the end of life,” said Betsy Walkerman, President of Patient Choices Vermont. “The plaintiffs in this lawsuit sought to muddy the waters and confuse medical professionals about their obligations.”
Last April, Judge Crawford dismissed the suit filed in July 2016 against the state of Vermont by Alliance Defending Freedom on behalf of the plaintiffs, Vermont Alliance for Ethical Healthcare and Tennessee-based Christian Medical and Dental Association. The groups claimed Vermont’s Patient's Bill of Rights for Palliative Care and Pain Management violated their religious rights by requiring doctors to discuss all end-of-life care options with their patients. Judge Crawford’s ruling concluded the Patient's Bill of Rights for Palliative Care and Pain Management and another Vermont law, Limitation of Medical Malpractice Action Based on Lack of Informed Consent, “continue to govern physicians in all aspects of their care of the terminally ill. Under these provisions, physicians must inform patients about all choices and options relevant to their medical treatment.”
The plaintiffs then negotiated a consent agreement with the Vermont Attorney General without consulting Compassion & Choices and Patient Choices Vermont. The plaintiffs filed the consent agreement with the court on May 5, the day of the appeal deadline, without notifying the Attorney General, Compassion & Choices and Patient Choices Vermont.
David Bassett, Samantak Ghosh, Nina Garcia, and Stephanie Neely of WilmerHale, Ron Shems of Diamond & Robinson, and Kevin Díaz are co-counsel on behalf of Compassion & Choices, Patient Choices Vermont and two Vermont patients, Benedict Underhill and Monica van de Ven (who died peacefully in January by utilizing Vermont’s Patient Choice at End of Life Act)
Groups File Motion to Strike Agreement that May Limit Doctor-Patient Conversations about End-of-Life Care
Lawsuit Consent Agreement Causes Confusion about Physician Obligations to Patients
Compassion & Choices and Patient Choices Vermont today filed a motion to strike from the court record the state’s Consent Agreement with physician plaintiffs in a dismissed federal lawsuit seeking to limit information provided to patients under Vermont law. The case sought to weaken the physicians’ duty to inform patients about all of their end-of-life care options. The groups oppose the Consent Agreement because it causes confusion about physician obligations to patients under Vermont law.
“Act 39 enables people near the end of life to intentionally live their remaining weeks or months knowing that they have the means for a simple and peaceful ending. Our goal is to make sure that all Vermonters know about this option and can make fully informed decisions about their end-of-life choices,” said Betsy Walkerman, president of Patient Choices Vermont. “That’s why it is critical that the court clarify the record and remove the Consent Agreement.”
“The Consent Agreement appeared to suggest legal and professional obligations that apply to medical providers to counsel or refer patients when they ask about medical options at the end of life somehow didn’t apply to plaintiffs,” said Kevin Díaz, national director of legal advocacy for Compassion & Choices. “The court should strike this agreement because it impacts the rights of patients by attempting to establish an unreasonably restrictive interpretation of Vermont law that directly contradicts the plain language of the statute and the court’s order.”
Last April, U.S. District Court Judge Geoffrey W. Crawford dismissed the suit filed in July 2016 against the state of Vermont by Alliance Defending Freedom on behalf of the plaintiffs, Vermont Alliance for Ethical Healthcare and Tennessee-based Christian Medical and Dental Association. The groups claimed Vermont’s Patient's Bill of Rights for Palliative Care and Pain Management violated their religious rights by requiring doctors to discuss all end-of-life care options with their patients. Judge Crawford’s ruling concluded the Patient's Bill of Rights for Palliative Care and Pain Management and another Vermont law, Limitation of Medical Malpractice Action Based on Lack of Informed Consent, “continue to govern physicians in all aspects of their care of the terminally ill. Under these provisions, physicians must inform patients about all choices and options relevant to their medical treatment.” [See page 8 of opinion here].
The plaintiffs then negotiated a Consent Agreement with the Vermont attorney general without consulting parties to the lawsuit, including Compassion & Choices and Patient Choices Vermont. The plaintiffs filed the Consent Agreement with the court on May 5, the day of the appeal deadline, without notifying the attorney general, Compassion & Choices or Patient Choices Vermont.
The Consent Agreement and Stipulation states:
“In accordance with the Consent Agreement, the State has included a revised question and answer for “Are doctors required to tell patients about this medical aid in dying?” on the “frequently asked questions” section of the Vermont Department of Health’s website about Act 39 … Nothing in the Consent Agreement gives up any legal rights of patients [but] The State will not oppose a motion to strike the Consent Agreement from the district court’s docket … ”
“By stipulating that ‘medical providers do not have a legal or professional obligation to counsel and refer patients for the Patient Choice at End of Life process,’ the stipulating parties are causing confusion about the rights of patients to such counseling and referral,” said David Bassett of WilmerHale, co-counsel on behalf of Compassion & Choices, Patient Choices Vermont and two Vermont patients, Benedict Underhill and Monica van de Ven (who died peacefully in January by utilizing Vermont’s Patient Choice at End of Life Act). “By limiting Act 39’s informed consent obligation — a critical aspect of the law — the Consent Agreement not only interferes with the prerogatives of Vermont courts and the legislature, but also impedes the successful implementation of the law,” concluded Bassett.
Compassion & Choices and Patient Choices Vermont praised a federal judge’s ruling to dismiss a lawsuit brought by religious groups seeking to undermine Vermont’s Patient Choice at End of Life Act (Act 39).
The law gives mentally capable, terminally ill adult residents of Vermont the option to get a doctor’s prescription for medication that they can decide to ingest to end their suffering and die peacefully in their sleep.
The Vermont Alliance for Ethical Healthcare and Tennessee-based Christian Medical and Dental Association filed the suit in July against the State of Vermont. The groups claimed Patient's Bill of Rights for Palliative Care and Pain Management violated their religious rights by requiring doctors to discuss all end-of-life care options with their patients.
In December, U.S. District Court Judge Geoffrey W. Crawford granted a motion by Compassion & Choices, Patient Choices Vermont and two terminally ill Vermonters, Monica van de Ven and Benedict Underhill, to intervene in the case, allowing them to become a party to the lawsuit. David Bassett, Samantak Ghosh, Nina Garcia, and Stephanie Neely of WilmerHale, and Ron Shems of Diamond & Robinson, were co-counsel on behalf of intervenors.
In January, van de Ven died peacefully after taking a doctor’s prescription for aid-in-dying medication. Late yesterday, Judge Crawford dismissed the case. His ruling concluded that two Vermont laws, the Patient's Bill of Rights for Palliative Care and Pain Management] and Limitation of Medical Malpractice Action Based on Lack of Informed Consent, “continue to govern physicians in all aspects of their care of the terminally ill. Under these provisions, physicians must inform patients about all choices and options relevant to their medical treatment.” [See page 8 of opinion posted here].
“I am only sorry Monica van de Ven is not with us to celebrate this victory that her courageous advocacy made possible,” said Linda Waite-Simpson, Vermont state director for Compassion & Choices. “Her peaceful death illustrates the importance of ensuring physicians respect the law and hold patient's wishes as a paramount goal.”
“This federal ruling is important because it underscores the importance of putting complete information in the hands of patients so they can make informed decisions consistent with their values,” said Kevin Díaz, national director of legal advocacy for Compassion & Choices.“
“Justice has prevailed in this case for terminally ill Vermonters like Benedict Underhill,” said Betsy Walkerman, President of Patient Choices Vermont. “This ruling reinforces the professional obligation of doctors to have full and open discussions, respond substantively to all questions, and enable patients to make fully informed decisions.”
Dear Members of the Maine Health and Human Services Committee:
I am pleased to submit this testimony on behalf of Patient Choices Vermont (PCV), the non-profit organization that successfully lobbied for the passage of Vermont's Patient Choice at End-of-Life law (Act 39) in 2013. Similar to the Oregon statute, Vermont's law established a private, voluntary way for terminally ill patients who are fully able to make their own decisions to secure medication they can use to control the timing of their imminent passing. I see that the two bills currently before your committee are very similar to Vermont's law.
The text of Vermont's law is at
The Vermont law is working well and is being implemented carefully, without any hints of coercion, abuse or haste. The safeguards in the legislation, requiring approval by two doctors regarding the mental capacity of the patient and certifying that the patient has a life expectancy of six months or fewer are functioning well. None of the fears expressed by the disability community at the Vermont legislative hearings that disabled people would be coerced into early death have come to pass.
Vermonters are overwhelmingly grateful for the passage of this Jaw. PCV consistently receives notes of gratitude from people who are facing terminal conditions and want to live their remaining days to the fullest extent possible.
To date, there have been 47 prescriptions written. The number of prescriptions is tracked by the Vermont Department of Health. Data is not available on the number of people who actually used the medication, as this is a private matter.
The Vermont Department of Health website provides guidance and forms to be used in connection with our End-of-Life Choice law. To my knowledge, this has not been a complicated or expensive process. In fact, when Maine adopts a similar law, the Vermont Health Department website would provide a good starting point for the information and forms you will need. Please see:
I trust that you have been discussing your proposed legislation with your constituents. In Vermont, surveys consistently found that 75-78% were in favor of the proposed legislation, and this was reflected by the great volumes of phone calls, letters and emails that our supporters sent to their state representatives. The most recent national survey, conducted by the faith-based non-profit Lifeway reported that 67% agree that "When a person is facing a painful terminal disease, it is morally acceptable to ask for a physician's aid in taking his or her own life." They went on to report:
"Among faith groups, more than half of all Christians (59 percent), Catholics (70 percent), Protestants (53 percent), Nones (84 percent) and those of other religions (70 percent) agree. Most of those who attend religious services less than once a month (76 percent) also agree." http://lifewayresearch.com/2016/12/06/most-americans-say-assisted-suicide-is-morally-acceptable/
So, although you may hear strong objections from representatives of various church groups, I urge you not to take their statements as representative of a majority of their members.
I would, without reservation, call end-of-life choice a life-giving option. In this, I speak from personal experience. My father, Dick Walters, who was the co-founder of PCV in 2002, declined very rapidly from lung cancer in 2015. His remaining life was a matter of months, in which be was increasingly unable to move without gasping for breath. Palliative treatments would have required hospital procedures three times a week to drain fluids and prescriptions for opioids that would have left him unable to think straight or communicate well. My dad was a vibrant, fun-loving person who considered life without meaningful communication no life at all. He had worked persistently for 13 years for the adoption of Vermont's End-of-Life Choice law and in October 2015, he went through the procedures to obtain his medication and set a date to end his life. In the week before he died, dozens of people called and visited for their last talks with Dick, many coming for his special brand of advice. Toward the end, he told me that he had had the most meaningful conversations of his life in that last week. He didn't want to leave, but he couldn't stay. It was a beautiful time for intentional connections, made possible because he had his medication and could minimize pain medication in the last week.
Act 39 has positively impacted patient choices and quality of care across the entire end-of-life spectrum. While few people may choose this option, just having the choice puts more emphasis on patient quality of life and decision-making. Although medical professionals in general seek to do their best to educate and listen to patients, there is a different kind of engagement now that patients have a choice besides medical procedures and extended suffering.
Most of the arguments against end-of-life choice are based on two arguments: The first is the idea that medical treatment can solve all pain and care issues. I am sure that you will hear from many family members and medical professionals who will tell you that this simply isn't the case. The second argument is that an end-of-life choice law is the first step on a slippery slope toward authorizing euthanasia. This is a thinly veiled attempt by a small number of people to dictate their moral or religious beliefs to everyone.
There is a reason that thousands of Vermonters signed onto PCV's work to adopt Act 39 and why so many continue to support our work to educate the public and implement the law. People in Maine have a similar strong independent streak, and l sincerely hope that you will positively consider this legislation.
I would be happy to provide further information or discuss any aspect of this topic. Our board includes medical doctors, lawyers and several people who have had personal experience with medical aid in dying. Please feel free to be in touch if we can be of assistance.
Betsy J. Walkerman, Esq.