Monday, March 25, 2019
Hilton Hotel, Burlington, Vermont

The Gerontology Symposium is a conference designed to enable participants to gain knowledge pertaining to a key areas of caregiving for older adults: End of Life Care and Transitions. The symposium also seeks to strengthen the connections between family caregivers and professionals. This year, topics will include:

• Keys to Navigating Care at the End of Life
• Advance Directives and Advance Care Planning
• Complex decision making when multiple agents are involved
• Grief and Bereavement, as experienced by families and professionals
• End of Life Doulas, an additional resource
• Hospice and Those Living with Dementia
• Hospice and Palliative Care services

Keynote Presenter - Dr. Karen Wyatt, Author of 
What Really Matters: 7 Lessons for Living from the Stories of the Dying 

The Center on Aging at The University of Vermont is pleased to present this program whose goal is to provide current, research-based information on topics relevant to both family and professional caregivers who work with our rapidly growing population of older adults. For the second year, the conference will offer two different tracks:

• Family Caregiver Track
• Professional Track

Registration Fees

Professionals: $35
Family Caregivers: $20 (discounted registration is intended for those caring for family members)
Continuing Education credit: add $20

Click for more information and to register... 

The idea of bringing people together to talk about death was originated by Swiss sociologist and anthropologist Bernard Crettaz who organized the first Café Mortel in 2004. The idea spawned an international Death Cafe movement with more than 6,000 hosted so far by various organizations around the world. 

Here in Vermont, the movement to socially de-stigmatize talk about death and dying is well underway, with many events over the past few years. In August 2018, Alexandria Kerrigan, a recent graduate of the University of Vermont's End-of-Life Doula Program, launched the first Winooski Vermont Death Café and has hosted six monthly events since, renaming the concept as Death Talks last December.

Death Talks provide a safe place for open dialogue and the philosophical exploration of themes such as mortality, the afterlife, spirituality, cultural practices, history, individual experience, and more. Death Talks is not a personal support group nor a counseling session.

On Wednesday, January 23 from 6-8 pm, Betsy Walkerman and Francesca Arnoldy of Patient Choices VT will present a session regarding Vermont's Medical Aid in Dying Law (Act 39). 

• Location: Wishbone Collective is a second-floor loft overlooking Main Street with entrance at 4 West Center Street in Winooski, Vermont.
• Light refreshments will be served.
• Donations to support the shared space are appreciated but not required.

Patient Choices Vermont provides informative and engaging speakers and is also able to facilitate discussions (stand-alone or within larger events). Please contact Francesca Arnoldy, our research and community outreach specialist, to book a customized presentation on Act 39, Vermont's Medical Aid in Dying law. 

Alexandria Kerrigan holds a Bachelor of Science Degree in Education and is pursuing a masters in social work. She has been interested and comfortable with the topic of death since childhood and has extensive personal experience with grief and loss. 

The Wishbone Collective hosts and sponsors monthly Death Talks in alignment with their mission to create a unique community space for all. 

RSVPs are not necessary but you can do so while sharing the event with friends at the Facebook event Page: Death Talks featuring Patient Choices Vermont: Act 39 Seminar.
Thanks for considering attending this community outreach event,

"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.”

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...

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. ​