Celebrating Doctors Who Teamed up in Support of Medical Aid in Dying; Encouraging Early Planning with Your Doctor
Who is the tough-looking team in this New York Times photo from 2005?
Standing behind my father, Dick Walters, are Dick Austin, MD, Carmer Van Buren, MD, David Babbott, MD, and Ginny Walters, PhD (co-founder of PCV). As Ginny writes today (at age 96), “Having MDs who became active in the campaign in the beginning of PCV’s work was really meaningful. Dick Austin wrote really good letters to the editor citing his experience as a physician. He never minced words." The NY Times article quoted Dr. Austin as saying, "I've seen some of my friends here die rotten deaths." He cited the long periods of heavy sedation and misery for terminally ill patients and their families.
Dr. Dick Austin died at the age of 99 this past week.
The New York Times article also included a picture of Dr. Diana Barnard, who spoke passionately about the need for Act 39 in the early days of the campaign. Dr. Barnard continues to serve on PCV’s Board of Directors, as does Dr. Jaina Clough, both palliative care physicians in the UVM Health Network.
We take this moment to honor these doctors.
Throughout PCV’s history, both practicing and retired doctors served on our Board of Directors and Advisory Board, including Dr. Don Robinson, Dr. Charles Gluck, Dr. Stephanie Barnes, and until this past summer, Dr. Fred Crowley, a retired radiologist and past president of the Vermont Medical Society.
Medical aid in dying is now widely available in Vermont.
Dozens of physicians across the state have prescribed medical aid in dying under Act 39. Oncologists and neurologists, along with palliative care doctors, being the specialists who serve the majority of terminally ill patients who qualify under Act 39, have the most experience.
At the same time, many physicians are just now being asked by patients about medical aid in dying for the first time. That is often why it takes several conversations for people who are interested in Act 39 to elicit a commitment from their physician to prescribe. Multiple discussions build trust in the relationship and confidence on the part of the doctor that the patient is making a well-considered and informed decision.
The PCV team crafted our How to Talk to Your Doctor page to help guide you in these discussions. As we describe the persistence often needed, it’s not about being aggressive or demanding; it’s about helping your physician understand how important this option is to you.
Requesting medical aid in dying requires planning. Start early.
In recent conversations with patients on PCV’s hotline, we are seeing that many people wait until it is too late to navigate the medical and legal process of Act 39. People assume that it will be just like requesting any other medical treatment, not realizing that the law requires multiple steps with time in between, and that if their doctor is new to medical aid in dying, multiple meetings may be needed to help them come to the decision to support their choice.
It is also the case that some people delay end-of-life discussions because they want to be focused on living and healing rather than dying. Paradoxically, having end-of-life conversations early can relieve a lot of uncertainty and help reduce fears and concerns. In this way, early conversations about dying are life-giving. We strongly encourage you to share this perspective with anyone who is living with a terminal disease. We are always here to listen and help patients and healthcare providers with Act 39 conversations.
With warm regards,
Betsy J. Walkerman, President
PCV Provides Act 39 Update Programs for Hospice Nurses ...and a special thank you to our terrific volunteers
Many thanks to all of you who made contributions in response to Patient Choices Vermont's (PCV's) Spring Fundraising appeal. With this strong community behind us, we can continue to offer a wide range of educational services and work to streamline Act 39. If you missed our spring communications, you can always donate online or by mail.
Patient Choices Vermont
PO Box 671
Shelburne, VT 05482
ACT 39 UPDATE PROGRAMS FOR HOSPICE NURSES
Patients and families who contact Patient Choices Vermont to learn more about medical-aid-in-dying almost always tell us how important and supportive their hospice nurses (and volunteers!) are. We deeply appreciate all of those who help provide hospice services. During discussions about end-of-life options including medical-aid-in-dying, Patient Choices Vermont always recommends the inclusion of hospice nurses as they are close to the patients, knowledgeable and compassionate, and able to serve as a trusted resource for discussions about end-of-life care and choices.
To support their services and expertise, PCV has been making the rounds to Vermont’s hospice programs to offer an update about what’s happening with Act 39 in Vermont. Here’s what’s included in PCV's 2021 Hospice Training and Update Programs:
If you would like to schedule an educational session for your hospice organization, contact Toni Kaeding MS RN.
Toni Kaeding, MS RN, PCV Board Chair, is a nurse whose work has spanned clinical, academic, administrative, and policy positions in Vermont. She retired from the University of Vermont where she held both faculty and administrative appointments in the College of Nursing & Health Sciences. She was founding Director of the Freeman Scholars Program. In 2012, Toni was named recipient of the Founder’s Award by the Vermont Medical Society. She enjoys cross-country skiing and running and lives at the end of the road with her family in Worcester, Vermont. Toni handles the many calls PCV receives from patients and doctors. She helps educate students and community members.
VOLUNTEER SPOTLIGHT: THE PEOPLE BEHIND THE PCV THANK-YOU NOTES, DATABASE, AND MORE
People from all walks of life are drawn to volunteering with PCV, offering expertise, time and energy.
Barbara Deal: If you have made a contribution to PCV in the past couple of years, you have received a thank-you card from Barbara Deal, a resident of Bristol, VT. Barbara was Director Addison County Hospice in the mid '90's and has a long-standing belief in encouraging people to say what they want the end of their lives to be like. She commented, "It has been an honor to serve PCV in this limited but sincere way. I have two dear friends who chose to use Act 39 and I am full of gratitude to PCV who made their choice possible."
Ann Crocker: Many thanks to Barbara as she now passes this responsibility to Ann Crocker. As Ann says, "It is an honor for me to be able to contribute to Patient Choices Vermont by thanking our donors. Each donation supports the very important work of educating Vermonters so that people who terminally ill are aware of Act 39 and the choice that it offers."
Nancy Hawley: Nancy is a business consultant specializing in business processes, systems, and information and accounting solutions. She has supported various aspects of PCV’s work since its founding in 2002. She recommended, configured and continues to maintain PCV’s supporter database. Her expertise in business data systems helps provide PCV with intelligent information for planning our fund-raising campaigns, and communicating effectively with donors. Thank you, Nancy!
Jonathan Crocker: Jonathan helps fine-tune PCV’s communications, providing editing services and expertise in story-telling for PCV videos. He also tracks donations and keeps the supporter database accurate and up to date. Jonathan says, “I am humbled and inspired by the people whose stories I have encountered in this work; by both their courage and their generosity in sharing such deeply emotional journeys. Like them, I hope these stories help spread awareness of the value of medical-aid-in-dying, and can help others through the experience.”
Congratulations New Mexico!
New Mexico’s new medical-aid-in-dying law just went into effect. Named for Elizabeth Whitefield, a long-time Albuquerque family law judge and attorney who did not live long enough to testify on behalf of the bill in 2019, the new law brings the option of support for peaceful death to New Mexico residents.
New Mexico is the tenth U.S. jurisdiction to enact a death with dignity law.
Thanks so much to donors from Randolph, Chester, Shelburne, Springfield, South Burlington, Hinesburg, Ferrisburg, Dummerston, Burlington, Hardwick, Newbury, Peacham, Warren, Salisbury, Underhill, East Thetford, Derby, Greensboro, Norwich, Weybridge, and many other towns.
We are very grateful to all the people who have responded to PCV’s spring fundraising letter with generous contributions. Our education programs and our work to improve Act 39 are possible only with your support. Thank you for making end-of-life choice a priority in your giving.
In the past month, PCV board members have given five educational seminars for healthcare providers and community members around the state. We've been pleased to respond to numerous requests for our brochure, Vermonter's Guide to Medical Aid in Dying, coming from churches, community centers, and hospice organizations.
Our Videos make up the most popular page on our website.
As one donor recently wrote, “The video of a woman going through the actual process of using Act 39 gave me a lot of reassurance. Keep up the good work!”
People have had a particularly powerful response to our video of Karen Oelschlaeger. Karen was extremely grateful for medical aid in dying and chose to be an advocate even in the last week of her life when she spoke to a reporter from VPR. The recent Vermont Public Radio story powerfully framed the struggle that certain parts of the Act 39 process have on people seeking aid in dying.
“I am always deeply impacted when I hear of someone whose end-of-life was made better by their having control at the end. I am eternally grateful to Karen and her family for sharing her story and her words in the recent VPR interview to help others have a better path as they near the end of their lives.” - former Lieutenant Governor David Zuckerman (PCV Advisory Board Member)
May 20th was the eight-year anniversary of Act 39. Let us know that you're celebrating by making a donation of $88, or $888, or perhaps a multiple of $8, such as $48, or $96…be creative!
Many thanks, and happy spring!
Betsy Walkerman, President
Patient Choices Vermont
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
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.