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.
February 15, 2017
Senator Patrick Leahy
437 Russell Senate Bldg
United States Senate
Washington, DC 20510
Dear Senator Leahy:
I have read of your serious concerns about Supreme Court Nominee Neil Gorsuch. I trust that you are already aware of his position on medical aid in dying, but I want to let you know of the direct impact his appointment could have on the freedom of choice of Vermont citizens.
Patient Choices Vermont is the organization that successfully lobbied for the adoption of Vermont's End-of-Life Choice Law (Act 39), which was adopted in 2013. Like similar laws in Oregon, Washington and now California, Act 39 enables a mentally competent adult who has been diagnosed as having no more than six months to live to request terminal medication. The patient can then take the medication or not as he or she may decide. More than 30 Vermonters have already used the law, dying peacefully with family by their sides. Many more write us every month to express their gratitude for the comfort of knowing they can have a measure of control in their final days.
Patient Choices Vermont was founded in 2002, and it took 11 years and countless hearings, meetings, briefings and careful drafting before Act 39 was passed. My parents, Dick and Ginny Walters, founded this organization and provided the persistent leadership it required. My father, who was dying of lung cancer, used the law in 2015, and my personal experience was that it was a life-giving treatment that enabled him to deepen many important connections in his final days.
Mr. Gorsuch wrote a book entitled "The Future of Assisted Suicide and Euthanasia," in which he argues that terminally-ill patients do not have a right and should not be permitted the choice to hasten their own death with their doctor's assistance, regardless of their suffering. To permit this, he maintains, is immoral.
Also, in 2006, the Supreme Court decided the Gonzales case in which the Court concluded that the Controlled Substances Act did not supersede Oregon's Death with Dignity law. The Court commented that the policy on aid in dying should be left to the states.
Our board and supporters are deeply concerned that if Mr. Gorsuch is named to the Supreme Court and when medical aid in dying cases make their way through the judicial system, he will be inclined to rule according to his own values. Such a case is currently at the District Court level here in Vermont. In this case, two religious organizations claim that their member doctors should not be required to even discuss self-directed end-of-life options with patients or to refer patients to a physician who will discuss all options. Patient Choices Vermont and the national organization Compassion and Choices have jointly intervened in this case.
Equally concerning is the move afoot in the U.S. Senate to override the votes of the District of Columbia City Council and Mayor, who recently adopted a medical aid in dying law like the one we have in Vermont.
If, at any point, it would be helpful for you or your staff to have further information on any of these matters, we would be happy to brief you and provide whatever support we can as you move toward Senate hearings on Mr. Gorsuch. We appreciate your work in this difficult appointment process.
Betsy J. Walkerman, Esq.
Judge Welcomes “Expertise” of Compassion & Choices, Patient Choices Vermont
A federal judge has granted a motion by Compassion & Choices, Patient Choices Vermont and two terminally ill Vermonters that allows them to argue in court against a lawsuit brought by religious groups to undermine Vermont’s End-of-Life Choice Act (Act 39). Act 39 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 claim both Act 39 and Vermont’s Patient Rights law violate the plaintiffs’ religious rights by requiring doctors to discuss all end-of-life care options with their patients (see complaint posted at: https://www.compassionandchoices.org/vermont-alliance-for-ethical-healthcare-inc-et-al-v-william-hoser-et-al/).
During the first hearing in the case on Nov. 8, 2016 the plaintiffs’ attorneys suggested his physician clients would be willing to “…tell a patient that they can Google assisted suicide on their cell phone and that's a reasonably available source of information…” (See page 40 of hearing transcript posted at: https://www.compassionandchoices.org/wp-content/uploads/2016/08/Vermont-Alliance-v-Hoser-et-al.-11-8-16-motion-hearing-wm.pdf).
“The notion that doctors could fulfill their professional duty to ensure patients can make fully-informed decisions by Googling to learn about their end-of-life care options is the height of irresponsibility,” said Linda Waite-Simpson, Vermont state director for Compassion & Choices. “It would be tantamount to doctors abandoning their patients at the most vulnerable time of their lives, especially given the danger of them Googling -- and relying upon -- fake news posted online.”
In granting the motion to allow Compassion & Choices and Patient Choices Vermont to intervene in the case, U.S. District Court Judge Geoffrey W. Crawford wrote: “As people potentially eligible for consideration under Act 39, both individual [patient] intervenors have strong personal reasons for resisting the type of silence or boycott which Plaintiffs seek to preserve for themselves on an issue of patient choice … the intervenor organizations [Compassion & Choices and Patient Choices Vermont] appear to have considerable experience in the field. The court welcomes their advice and expertise…” (see pages 4-5 of intervenor order posted at: www.compassionandchoices.org/wp-content/uploads/2016/12/ORDER.intervene.pdf).
“The Vermont law respects everyone’s personal beliefs because it allows any person or healthcare professional to refuse to directly participate in medical aid in dying,” said Kevin Díaz, national director of legal advocacy for Compassion & Choices. “But these doctors contend their personal beliefs should trump their patients’ rights when it comes to simply referring them to a healthcare professional to advise them about all their end-of-life care options. It should send shivers down the spine of every patient.”
“This case is about a patient’s right to know what their options are at the end of life,” said Betsy Walkerman, President of Patient Choices Vermont. “Physicians should not impose their personal religious values on their patients by preventing them from receiving information about all of their end-of-life care options.”
A Growing Number of Terminally-‐Ill Vermonters Using the Law
End-of-life choice advocates today honored the three-year anniversary of Vermont’s Patient Choice at the End-of-Life law, which was signed into law by Governor Peter Shumlin on May 20, 2013. Known as Act 39, the law allows a terminally-ill, mentally competent Vermonter to voluntarily self-administer prescription medication to control the timing of their imminent passing.
“People all across the state are grateful for the leadership Vermont legislators have taken to provide comfort and peace of mind to those facing terminal illness and deeply personal end-of- life care decisions,” Betsy Walkerman, President of Patient Choices Vermont, said. “In their cards and emails, they tell me they feel empowered, and able to live life to the fullest even during their difficult final days, knowing that they have a measure of control to avoid prolonged suffering.”
Twenty-four prescriptions have been written under Act 39 in the past three years. Sixteen of them were written in the last year, showing a careful, steady utilization increase.
“Implementation of the end-of-life choice law is going well as more and more patients gain access to this end-of-life option,” according to Linda Waite-Simpson, the Compassion and Choices Vermont director. “I regularly consult with patients and medical providers interested in learning more about both Act 39 and all the other important end-of-life options so I have a really strong connection to the real world benefits of the law.” Compassion and Choices offers voluntary, private end-of-life option consultations to Vermonters and serves as a helpful resource to interested medical providers.
A milestone from the law’s third year in Vermont was the October 16, 2015 passing of Richard “Dick” Walters, founder and long-time President of Patient Choices Vermont. After a swift decline from lung cancer, Dick was grateful to be able to direct his own end-of-life under Act 39.
On April 30, the Vermont General Assembly wisely rejected numerous attempts to repeal the state's death-with-dignity law that enabled Maggie Lake to peacefully end her dying process from terminal cancer. Called Patient Choice and Control at End of Life (Act 39), this law gave Maggie the option to get a doctor's prescription for medication that she consumed so she could gently die in her sleep at home, with family including sister, Katy Lesser, at her bedside.
Today, Katy is grateful that her testimony about Maggie, a family nurse practitioner and artist, may have played a role in the Legislature's decision. Below is an excerpt of Katy's testimony that was recorded before the Legislature voted, explaining how Act 39 allowed Maggie to end her suffering after she endured agonizing treatments that failed to cure the cancer in her lymph nodes.
"She did pretty much everything she could to be well: a stem-cell transplant and chemotherapy…another stem-cell transplant, chemo and radiation. She reached a point where she was in constant pain, and she was having a lot of trouble breathing. And so the option to end it was something she wanted, something she chose. I think she felt empowered, and I think she felt relieved, and calmer, and glad that she had the option."
As Maggie's experience demonstrates, two years after Vermont became the first state to authorize death with dignity via legislative action, Act 39 is working exactly as its primary advocates, Patient Choices Vermont and Compassion & Choices, predicted it would. It is giving mentally competent, terminally ill adults the option to die peacefully if their end-of-life suffering becomes unbearable. This law provides criminal, civil and professional protections for physicians who prescribe aid-in-dying medication for terminally ill adults who request it. Participation in the law by anyone, including patients, physicians and pharmacists, is entirely voluntary.
While federal and state laws protect the identity of patients so they can maintain their privacy unless they volunteer to go public, we now have two years' experience with the Vermont law. Physicians have written prescriptions for seven terminally ill, mentally competent adults who qualified for aid-in-dying medication under the law during the last two years, according to the Vermont Department of Health. Two of these people died from their terminal illnesses before they even got their medication. Five terminally ill people received the medication and three have ingested it, including Maggie Lake.
While few people actually secure and consume the prescribed medication as Maggie Lake did, many who face a terminal prognosis consider the option and are reassured that it exists. Some complete the eligibility process and achieve peace and comfort simply having the medication in their possession, but never actually take it. For them, having this option brings tremendous relief and dramatically improves the quality of life's final days.
I am gratified that both the Vermont Senate and House of Representatives defended the law from efforts to repeal it during this legislative session. Our elected leaders have wisely affirmed this legal right and end-of-life medical option for all terminally ill, competent, adult Vermonters.
We all deserve tranquility, choice and peace of mind at the end of our lives, and I will continue working to make these things available to all Vermonters.
Linda Waite-Simpson of Essex Junction is a former Vermont state representative who currently serves as the Vermont state director for Compassion & Choices. This article was first published by the Burlington Free Press on May 21, 2015.