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...

​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 
http://legislature.vermont.gov/statutes/fullchapter/18/113) 

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: 
http://healthvermont.gov/systems/patient-choice-and-control-end-life. 

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. 

Sincerely,
Betsy J. Walkerman, Esq.
President

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.
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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.
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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.