Monitoring how Act 39 works for Vermonters who want to consider medical aid in dying is a key mission at Patient Choices Vermont (PCV). In recent emails we have discussed some of the challenges they face, especially in connection with the law's approval process. As Dee Allen, a recent recipient of medical aid in dying, says:
“The timeline requirements can make it so that you don’t have access to the law.”
Following a comprehensive review over the past nine months, PCV shared our findings with key legislators who have now introduced S.74 to modify Act 39 in important ways. The amendment would:
These improvements can be achieved while retaining the comprehensive system of strong safeguards already in place under Act 39.
Please see our Act 39 and S.74 Summary for a greater explanation.
To bring real lives into the picture, we have completed another short video. Many thanks to Dee Allen and her family for sharing her story just a few days before she died in December, 2020.
If you haven't yet seen the 5-minute video of Karen Oelschlaeger, please spend a few minutes to watch it as well on the Videos Page of our website.
Thank you as always for your interest and support. As Dee Allen says in our new video,
“The gift is that I get to go out while I can still tell my children that I love them.”
Your support helps make the creation of these poignant videos and all of PCV’s work possible. At a time when the legislature and much of the medical system are working hard via remote meetings, all of our best communication skills are needed to inform and provide a true sense of how aid in dying is having a profound impact on Vermonter’s lives.
Betsy Walkerman, President
Patient Choices Vermont
“I was suffering constantly…I cannot emphasize enough how much of a relief it has been to just have those medications in my possession.” - Karen Oelschlaeger, 36 year-old Vermonter suffering from stomach cancer who has qualified to use Act 39
Many thanks to Karen Oelschlaeger for so openly and articulately sharing her story. As we begin to update legislators on how Act 39 is working, stories like this one are very powerful. In addition to describing how grateful she is for the option of medical aid in dying, Karen illustrates how challenging it was for her to work through the process required by Act 39. She was especially challenged by the provision in the law that requires that both oral requests to the physician be made “in the physical presence” of the doctor, as opposed to through telemedicine, at a time when she was physically so debilitated.
Please, take a few minutes to watch "Karen’s Story" below and
our entire collection of videos in PCV's Living While Leaving Series.
Do you have a story to share?
If you are considering using medical aid in dying or have attended the death of someone who has, and if you would like to share your story, please contact us. We would be happy to discuss the possibilities.
Welcome new PCV Board Members…
PCV is pleased to welcome former Lieutenant Governor David Zuckerman to the PCV Advisory Board. David was the first legislator in 1998 to introduce an aid-in-dying bill in Vermont. He worked steadily along with many Vermonters to bring Act 39 to fruition in 2013. As David commented, “Every time I hear an aid in dying story it gives me pause to reflect that I have helped people in a very profound and intimate way...even if at the end of their lives.”
PCV is also pleased to welcome David Otto to the Board of Directors. David is the founding CEO of Otto & Associates, a holistic financial planning firm. He has previously worked as a pastor and pastoral counselor. We appreciate both his business perspective and his deep counseling experience.
Thank you to all those who generously contributed to PCV with yearend donations. We appreciate your confidence and shared sense of mission. If you missed making a yearend contribution, please consider one now. Your funds will help us creatively and sensitively communicate how deeply important end-of-life choice is to all of us.
We were drawn to this classic covered bridge as a symbol of the beauty around us, our resilience as a community, and the importance of pausing now and then to remember what’s important. I’d especially like to thank local artist David Goodrich for donating use of the artwork. You can see more of his silkscreen prints and custom artwork at his website GoodrichInk.com. And thanks to Jonathan Crocker for composing the accompanying poem.
It has been quite an emotional week at Patient Choices Vermont, as we have just recorded the stories of two people who are planning to use medical aid in dying very soon. Their reflections are deeply moving and provide valuable feedback on how the process of medical aid in dying is working for patients. One of them told me, "I am preparing to go out in the most gentle way possible... while I can still tell my children that I love them.” It was also helpful to hear from her that our website's page How to Talk to Your Doctor helped her respectfully yet directly state her wishes to her physician and navigate a crucial part of the Act 39 process.
Your support helps make it possible to for us collect and share these stories as sensitive video presentations. We hope that that others may learn from their experience, as we have.
Many thanks to everyone who has contributed to PCV this year. If you have not yet made a donation in 2020, please consider what end-of-life choice means to you.
With warm wishes for a joyful and peaceful holiday season,
Betsy Walkerman, President
Patient Choices Vermont
Act 39 Tune-ups - Step Up to the Challenge
“In person.” “Face to face.” “Physical presence.” Meeting these sorts of requirements was once accepted as routine, but no longer in the Covid era. Fortunately, in healthcare, Covid-19 has accelerated adoption of telemedicine.
Our educational programs, while currently somewhat curtailed, are vital. In January, the PCV program at the Dana Medical Library at UVM and the Grand Rounds conducted at the UVM Medical Center together drew more than 300 doctors and other medical professionals, with standing room only. Clearly more patients are asking about aid in dying, and more doctors are turning to PCV to help learn how to handle these conversations.
Please donate online at PatientChoices.org/donate. You can also provide your support via stock donations or gifts in honor of anyone for whom end-of-life choice has been important.
We just received word from Karin and Bill Schwanbeck that their new documentary is now published on Vimeo.
A year ago, they traveled to Vermont with their crew to interview Dr. Diana Barnard, Peggy Stevens and me, Betsy Walkerman, along with patients, doctors, and others in Connecticut. It’s a very engaging and sensitive film. Karin is a professor at Quinnipiac University in Connecticut and their hope is to influence the legislative process in their own state. You can watch the full 57-minute film online for free:
The film serves to demonstrate that we Vermonters are having a major impact on legislation in other states.
New Resource for Doctors and Patients:
We are pleased to announce that the newly-formed American Clinicians Academy on Medical Aid in Dying has launched a valuable website; ACAMAID.org includes some great videos and guidance for both patients and the medical community. In particular, we would recommend this video, which answers the question, “ What is it like on the day you take your medication? ”
PCV Board member Dr. Diana Barnard serves as our state’s liaison to the board of the ACAMAID. The formation of this organization is strong evidence that aid in dying is finding its way into the mainstream of medical practice and end-of-life care.
PCV Board Member Dr. Diana Barnard Named Associate Professor at UVM - Help Us Celebrate by Signing Below
PCV Board Member Dr. Diana Barnard has been named Associate Professor at the Robert Larner, M.D. College of Medicine, UVM.
Congratulations are in order to Dr. Barnard on her promotion to Associate Professor at UVM’s Robert Larner, M.D. College of Medicine. Dr. Barnard has served on the board of Patient Choices Vermont for more than 15 years. She has worked persistently to educate legislators and the public about medical aid in dying, palliative care and hospice, all of which were critical to the ultimate passage of Vermont’s Act 39 in 2013.
Photo by Carolyn Bates
During the early years of the PCV campaign, she spent many days in public hearings, and provided the key practicing physician’s voice on our board to shape the language, presentation, and specifics of the law. In the Vermont hearings Dr. Barnard’s testimony was so clear and direct that she was recruited by the national organization Compassion & Choices to testify in New York, Hawaii (successful passage) and Alaska based on her experience with end-of-life medical practice and Vermont’s Act 39. She was also recruited to appear in training videos that are part of Compassion & Choices Doc-to-Doc program.
Since the passage of Act 39, Dr. Barnard has focused on education of the public and doctors in Vermont. Each year she has given both formal and informal educational sessions at hospitals, for medical groups, for hospice organizations and at conferences. As PCV’s primary doctor “on call,” she responds to requests from other Vermont doctors for coaching on how to navigate Act 39 discussions, and is Vermont’s resident expert on medical assessments, medications and instructions in connection with medical aid in dying. She is a strong educator, representing the medical profession, and always putting the patient first.
Today we mark the seventh anniversary of Vermont’s End-of-Life Choice Law (Act 39).
The signing ceremony was the culmination of many years of work.
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.
As always, we are here if you or your friends need our advice or assistance.
With best regards,
Betsy J. Walkerman, President
Diana Barnard MD and Jaina Clough MD spoke to a standing-room-only crowd on the topic of “Act 39, MAID in Vermont: A Clinician Update” at UVM Medical Center’s Davis Auditorium on February 28. 2020.
Nearly 200 physicians and other medical staff from the UVM Health Network arrived to hear their two colleagues present “Grand Rounds.”
Dr. Barnard and Dr. Clough reviewed national trends, state data, and practical clinical information on the topic of medical-aid-in-dying (MAID), including evolving drug protocols and available pharmacies. The current number of people in Vermont who have requested and qualified for the terminal prescription since 2013 when Act 39 became law, is 87. The majority of those individuals suffered from cancer.
Dr. Barnard, who attended the first ever National Clinicians’ Conference on MAID in California in February, reported on the clinical experience and research on medications occurring across the country. The conference concluded by moving forward with the establishment of the "National Academy of MAID," which will work to promote excellence in end-of-life care including promoting education and collaboration around MAID. While it is not yet fully formalized, Dr. Barnard will serve on what will most likely be called the Academy's Development and Advisory Committee.
Dr. Clough recognized local authors Kara K Landry MD, Janet Ely APRN, and Alissa Thomas MD for publication of their article, “Experience and Attitudes Regarding Medical Aid in Dying, Act 39, Among Vermont Specialty Practices”. The article appeared in the Journal of Palliative Medicine, October 2019 and substantiated the position that MDs want more information on the topic.
Following their presentation of factual information, the duo turned their attention to how physicians respond to patient requests for MAID and role-played various scenarios for the appreciative audience. The number of questions and comments generated by this activity suggests that physicians consider MAID a topic worthy of ongoing discussion and learning. While no physician is required to participate in Act 39, it is comforting to know that facts and understanding will inform that decision.
The number of medical professionals attending represents a big increase from previous workshops, signaling improvement in future access to knowledgeable doctors for patients seeking to explore medical aid in dying.
Dr. Clough, is board certified in both Internal Medicine, and as a Hospice Medical Director. Dr. Barnard is a Family Practice doctor, board certified in both Hospice and Palliative Care, and also as a Hospice Medical Director.
We are pleased to share information with Vermonters in the Montpelier region at a free educational discussion about medical aid in dying co-hosted with Capital City Grange.
Betsy Walkerman, President of Patient Choices Vermont will present "Your Options, Your Autonomy at End of Life" from 5 - 6 PM on Saturday, February 1. Please join us at this informative opportunity.
Learn, Ask questions, and Share Stories
Learn about Medical Aid in Dying (MAID) at a panel discussion at 5 PM on Tuesday, January 28 at the University of Vermont’s Medical Education Pavilion, Larner Classroom, Room 100.