Roundhouse Reflections
By: Barak Wolff, Founding Member, NM End of Life Options Coalition
From my workstation behind the half wall in Room 300 of the Roundhouse, I sit here amazed that this year’s short session has less than a few days to go before it ends “Sine Die” on February 20th. The session seems to be moving forward smoothly as the $7.6 billion budget for next fiscal year has been passed by the House and is now being considered by the Senate. Thousands of capital outlay requests have been submitted for large and small improvement projects benefitting most every community in the state. Hundreds of bills, memorials and resolutions are being considered, evaluated, debated, and sometimes celebrated.
Once again, I am so taken with the richness of this experience. Even after 15 years it is an honor and a pleasure to work once again, albeit briefly (30 or 60 days), for the people of New Mexico in this beautiful building with its curved walls covered with the best and most diverse art that New Mexico has to offer. It is wonderful to behold as it fills up each day with hundreds of school kids; cowboys in boots and big hats; lobbyists of all kinds in suits. dresses and dress shoes; Native Americans from all over NM; advocates looking passionate and animated trying to buttonhole a legislator and get their support; elders (some with walkers); maintenance workers keeping the place as spotless as possible all day long; and security, State Police and EMTs in uniform working to keep us all safe. It can be a serious place, sometimes even solemn, but often it is loud, energetic and even chaotic at moments. It is a marvelous reflection of our great state.
And sometimes there are special moments such as the Senate Floor debate on SB 5, the Extreme Risk Firearm Protection Order Act, which would allow for confiscation of firearms under certain prescribed conditions. It is a complicated and controversial bill that pits some gun advocates and many NM sheriffs against those who are concerned about suicide, domestic violence and gun violence in our schools and communities. The Senate Chamber was tense and the viewing gallery was full. The process started with a series of amendments that were discussed and most were adopted. Then the amended bill was debated strongly with serious, substantive and thoughtful points, questions, responses and exchanges from all sides…getting deeply into the weeds of the proposed bill. After 2+ hours the final vote was 22-20 in favor.
It is so encouraging to witness true democracy in action…a considered and respectful debate followed by a fair vote. Had the vote gone the other way I would personally have been disappointed, but I would still be impressed with the process. It stands in stark contrast to what we are experiencing all too frequently from our lawmakers in Washington DC. One can only hope that next year when we work to pass the Elizabeth Whitefield End of Life Options Act that we have a similarly respectful and thoughtful debate.
And finally, some positive news about our New Mexico End of Life Options Coalition. We were notified this week that we received a mini-grant from the Death with Dignity National Center to help improve our communications and our outreach efforts. It will help us reach more communities and groups with education and training about advance care planning, negotiating the care system and end of life options. Our next Monthly Update will provide more details about our plans moving forward. Until then…keep the faith.
New Mexico: Medical Aid in Dying on TV
Representative Debbie Armstrong, sponsor of the 2019 HB90 Elizabeth Whitefield End of Life Options Act and Chair of the House’s Health and Human Services Committee, was the featured guest on the Sunday, February 9, 2020 episode of the PBS television show, Report from Santa Fe. Rep. Armstrong discussed legislation in both houses of the New Mexico Legislature dealing with critical health issues such as prescription drugs, insurance, and assistance to seniors.
Our champion Rep. Armstrong also talked about her intention to introduce a medical aid in dying bill in the upcoming 2021 Legislature. Host Lorene Mills described the testimony in 2019 as “the most powerful and moving testimony I have ever heard in the 35-40 years covering the Capitol.” How wonderful to get such recognition for our cause. To view their discussion about this legislation, click on the link below and scroll forward to approximately the 20:10 minute mark.
https://www.pbs.org/video/rep-debbie-armstrong-xxxpfb/
National Updates
Current Legislation Across the U.S.
Introducing, monitoring, supporting and opposing legislation in state houses across the country are part and parcel of expanding and ensuring that end of life options are available for all Americans. Even in states that have long ago passed and successfully implemented medical aid in dying (MAID), the effort to sustain that right is on-going.
Currently there are over twenty pro-MAID bills in seventeen different states. There were also anti-MAID bills in the NJ Legislature where medical aid in dying is currently authorized and another anti-MAID bill introduced in the state of New York, where MAID is currently not authorized. NY also introduced a bill to “study” MAID and another study bill was introduced in the authorized state of WA. Hawaii, Washington and New Jersey, all authorized states, also introduced a total of seven bills among them aimed at improving MAID.
Volunteers, supporters, and advocates have been mobilizing in almost every state. It’s important that we continue to work with our national partners (Compassion & Choices and Death with Dignity) to change federal policy to improve care and expand choice, enact and implement state medical aid-in-dying laws, and protect and improve the laws that are currently in place.
Colorado: The Results are In!
It’s been three years since our neighbors to the north authorized medical aid in dying through a referendum on the 2016 ballot. The law, passed by 65% of Colorado voters, authorizes mentally capable, terminally ill adults with six months or less to live the option to request a doctor’s prescription for medication they can choose to take to die peacefully if their end-of-life suffering becomes unbearable. The law took effect on Dec. 16, 2016, after its adoption as one of the most popular ballot measures in Colorado history, with over 1.7 million Coloradans voting in favor.
With more than 40 years of combined experience with medical aid in dying in Oregon and the other authorized jurisdictions, it is clear that implementation takes time. Based on the 2019 report recently released by the Colorado Department of Public Health & Environment Vital Statistics Program, the number of prescriptions written in Colorado has increased from 2018 by 38%. In 2019, 170 patients were prescribed medical aid-in-dying medications. Of those, 129 went on to fill their prescription.
One couple moved to Colorado hoping the medical care in the state would help improve her condition. But as hope for a cure for Alice remained elusive, her husband James said: “it’s fortuitous that medical aid in dying was available here.” Alice died on her own terms in September of 2019 after taking the medical aid-in-dying prescription. “We are lucky to have connected with a doctor willing to prescribe. In a sense, he was a lifesaver — his willingness to write the prescription brought immense relief to Alice. She wanted to be in control of her routine and destiny. It was clear that Alice was going to quickly lose control; medical aid in dying gave Alice the control she needed.”
“The report shows the growing progress and acceptance of medical aid in dying among physicians,” said Sam DeWitt, southwest regional campaign & outreach manager for Compassion & Choices. “Last year, prescriptions were written by 75 unique physicians,” he said. “Over the course of the End-of-Life Options Act, 130 individual doctors have written prescriptions for their terminally ill patients to avoid unwanted suffering. That progress represents many years of outreach and education efforts by Compassion & Choices staff, volunteers and patient advocates.”
“Not every physician who wants to support their patients’ end-of-life wishes can. While we’ve seen improvement in leadership from some facilities and medical systems on this issue of patient-directed care, there are still areas of the state that don’t have ready access to a supportive medical facility. That can really hinder those who want this compassionate end-of-life care option,” DeWitt said.
For those patients who don’t reside on the Front Range, or who are members of communities that are chronically underserved medically, accessing the full array of end-of-life options can be difficult. However, 2019 showed more people from outside the Front Range – 17% – were able to access a prescription. “We know the majority of those who can decide to pursue medical aid in dying are older, white and in the more populated areas of the state. Compassion & Choices is actively working across rural areas to address access and in communities of color with the guidance of our African American and Latino Leadership Councils.”
Similar to previous years, over 60% of those who received a prescription for medical aid in dying had terminal cancer, followed by progressive neurological disorders at 18%, cardiovascular disease at 8%, chronic lower respiratory disease at 5%. The 129 prescriptions were filled by 33 unique pharmacists.
Countdown to the 2021 New Mexico Legislature
Over the next 11 months, we will feature a countdown to the 2021 Legislative session. The purpose of the countdown is to provide supporters with action items they can take each month to show their support and advocate for the passage of medical aid in dying legislation. Look for our countdown meme (see below) in this monthly e-newsletter and on the Coalition’s website (www.endoflifeoptionsnm.org).
Advocate Spotlight:
Outreach Around the State
Silver City
The Silver City Action Team has been a fixture in the small community for many years, advocating for end of life options in the southwest region of the state. Team leader Adrienne Dare convened the first meeting of the year on January 23, where a group of committed volunteers developed their plans for education and advocacy for the next twelve months.
If you are in this part of the state and would like to contribute to the efforts, you can contact Adrienne at dareadrienne@gmail.com and plan to attend the next Action Team meeting on February 27, 2020 from 2:00 – 4:00. pm.
Truth or Consequences
On February 1st, Mary McLaren and Mary Kay Brady, members of our Las Cruces Action Team, traveled an hour or so up the road to the town of Truth or Consequences (T or C) to attend the first Annual Live Long and Prosper festival at the T or C Civic Center. Met by Compassion & Choices state organizer Jill VonOsten from Rio Rancho, the team set up a booth and gave a twenty-minute presentation to educate festival goers and bring awareness to end of life options. “We really didn’t know what to expect given that this event was the first of its’ kind in the small town, but were pleasantly surprised by the number of folks who attended,” remarked VonOsten. There were some out of state visitors who identified themselves as “snowbirds,” but for the most part, the crowd consisted of local residents.
So many of the attendees shared their own experiences with end of life. Many were nurses, hospice volunteers and healthcare professionals, most were over the age of sixty, and were overwhelmingly in support of medical aid in dying. “Our booth was a real hit at the festival,” Brady observed. “We talked to people non-stop, and added dozens of new people to our mailing list to keep them abreast of our progress to authorize medical aid in dying.” If there was any doubt, this event shows that even in small New Mexico towns, people are passionate about this issue and do come out for these types of events.
Las Cruces
The Las Cruces Action Team has been attending the monthly meetings of the Doña Ana County Interagency Council. This group provides a network for social service providers in the County. Las Cruces Action Team leader, Mary Kay Brady, regularly participates in these meetings so other social services providers in the area are aware of the end of life options movement and our upcoming legislation for medical aid in dying. At their March 11th meeting, Mary Kay will be giving a short presentation about Compassion & Choices, the NM End of Life Options Coalition and medical aid in dying. The meeting runs from at the 12 noon to 1:00 pm at the Housing Authority Conference room, 926 S. San Pedro in Las Cruces.
The Action Team will also attend the Las Cruces Palliative Care Coalition (LCPCC) meeting later this month held at the Community Foundation of Southern New Mexico. This group of more than thirty promotes education and collaboration about the benefits of palliative care for patients, families, healthcare professionals, the community, and insurance carriers. LCPCC encourages collaboration between all appropriate healthcare organizations, facilities, and services providing for relief of suffering and is guided by the principle that collaboration leads to optimal care for the people of Las Cruces. With like-minded missions, we believe it’s important that members of this coalition are kept informed about our efforts to pass medical aid in dying.
Finally, Action Team Las Cruces is pleased to announce our venue to support National Healthcare Decisions Day – a day created with the purpose of inspiring, educating and empowering the public and providers about the importance of advance care planning. On Thursday, April 16, 2020 at 1:00 pm the program will begin at Thomas Branigan Memorial Library at 200 E Picacho Ave. in Las Cruces. Come learn about the importance of advance care planning, health care proxy/surrogates, NM MOST, DNR, EMS/DNR and much more. We will share the Death Deck, Go Wish and Have the Talk – all tools to make your planning easier. Guests may participate in Dying to Talk event. Contact Mary Kay Brady email: jmranch@ymail.com or call 575-546-1931.
Albuquerque
Join Jan Wilson, Albuquerque Action Team leader, on Wednesday, February 19, 2020 for a presentation on end of life issues. Jan is an experienced trainer and educator who has been educating New Mexicans about advanced planning for many years. Her presentation will take place from 9:00 a.m. – 11:00 a.m.at the Highland Senior Center, 131 Monroe St NE. That’s just off Central Ave. in Albuquerque.
Rural Outreach
Plans to partner with the New Mexico Community Health Workers Association (NMCHWA) to provide training to CHWs on advanced directives and end of life options have come to fruition! This month and next, CHWs and Community Health Representatives (CHRs) on tribal lands will be trained in three locations across the state. On Wednesday, February 26, 2020, CHWs and CHRs from rural areas within central New Mexico will meet at Cochiti Pueblo and will receive continuing education units (CEUs) for their participation. A second training will be offered on Friday, February 28, 2020, at the Espanola Rio Arriba Health Commons for those who live in the northern part of the state and a third training will take place on Wednesday, March 18, in Anthony, NM south of Las Cruces. The Anthony training will be offered in Spanish.
Outreach to Spanish Speaking Populations
As part of our efforts to reach all New Mexicans with information about end of life options, we have made it a priority to offer informational brochures and materials in both English and Spanish languages. In addition to offering CHW trainings in Spanish (see above), C&C’s National Latino Constituency Manager and Rural Outreach Coordinator for New Mexico Maria Otero, has also translated one of our important one-page fact sheets: The Facts About Medical Aid in Dying, into Spanish: Datos sobre la Ayuda Médica Para Morir.
Spanish speaking New Mexicans can now read the key provisions and safeguards in the proposed medical aid in dying bill in their first/preferred language. In addition, the fact sheet speaks to the combined experience from authorized states, the growing support among physicians, religious communities, bi-partisan legislators and all races and ethnicities. Showing that public support for medical aid in dying has nearly doubled since Gallup first polled on the question in 1947.
Book Review
Book Title: The Art of Dying Well, A Practical Guide to a Good End of Life
Author: Katy Butler
Book Review: Mary Kay Brady, Action Team Leader – Las Cruces
For many people, dying is something to keep in the way far back of the mind never to really be thought about until something happens in your circle of friends and family. Then thoughts pour in as to how do we deal with all the steps that a death involves. Someone said they were not ready to die and my response was neither am I but the time to plan is now before you are faced with the inevitable.
This book is just the guideline we are all looking for. It provides a glossary of medical terminology to help you travel the path, resources to other books, films and websites, community groups, blogs and online magazines. Topics include aging in place, picking a younger doctor and when not to call 911. So helpful is her discussion about pharmaceuticals and utilizing the American Geriatrics Society’s Beers Criteria to check out what your doctor is prescribing for you, as is the discussion about finding health care professionals, including palliative care.
In writing the book, author Katy Butler was inspired by the medieval death manual Ars Moriendi or The Art of Dying Well. Taking the mystery of death in short, simple steps. My death and yours is not a medical event but rather a life event. Let’s take that back from the medical model and ask – No, demand! – from our health care practitioners, that they treat the person not just the disease or malady.