January 2020

 

Keeping YOU in the Loop

It is our pleasure to represent the New Mexico End of Life Options (NM EOLO) Coalition and serve as co-editors of this monthly update. We hope to share timely news and developments with you about passing and implementing a medical aid in dying law here in New Mexico.

 

Barak Wolff, NM EOLO Coalition
Jill VonOsten, Compassion & Choices NM

Legislative Update

Following our valiant, albeit unsuccessful, advocacy efforts to pass the Elizabeth Whitefield End of Life Options Act, championed by Rep. Debbie Armstrong and Sen. Liz Stefanics, during the 2019 legislative session, the logical question is, “Are we going to try again in the upcoming 2020 session?” The answer is…“no, not unless something changes dramatically in the next few weeks” and we do not expect that to happen.  As you may recall, every other year in New Mexico the Legislature meets for only 30-days.  In these “short sessions” the Legislature concentrates on the budget and is limited to financial matters and those non-financial matters initiated by the Governor (aka the Governors “call”). Although the Governor is supportive of medical aid in dying and would place it on the call, at this point almost all of the legislators will be the same as in 2019, so we are still several votes short of ensuring passage of the Elizabeth Whitefield End of Life Options Act.  We do not want to risk another defeat for this important bill.

So, we are continuing our efforts of education, outreach and advocacy with the intention of once again submitting our medical aid in dying bill in the 60-day, “long session” that begins in January, 2021. That will be after the November 2020 elections and we are hopeful there will be at least several new legislators who understand the need and support medical aid in dying as an additional end of life option!  This strategy gives us an additional year for outreach and advocacy to further galvanize support for medical aid in dying in New Mexico. This monthly  “e-newsletter” is part of that effort, so please feel free to distribute it widely to family, friends, neighbors, co-workers, and any others who may support our efforts.

As part of our advocacy, we (NMEOLO Coalition and our C&C partners) are actively tracking each Senate and House of Representative district race throughout New Mexico.  All 112 legislators (42 in the Senate and 70 in the House) are up for re-election next November.  By March 10, 2020 all those interested in serving will have to file with the Secretary of State’s Office, on June 2nd there will be Democratic and Republican primary elections to narrow down the candidates in each party, and then the final vote will be on Tuesday, Nov. 3, 2020, the same as the national presidential election.

We have a solid basis of advocacy information on many current legislators because they previously voted for or against our bill or they have indicated their support or opposition.  As we learn about new candidates, we are reaching out to them as quickly as possible to ask for their support and/or provide them additional information about medical aid in dying.  We are also working to get a question about medical aid in dying in various forums and candidate surveys, like the one done by the Albuquerque Journal each year.  Regular updates and action suggestions for your advocacy efforts will be included in these monthly newsletters.  With clear support from Governor Michelle Lujan Grisham, our task is to achieve at least a simple majority of both the House and the Senate in 2021…and we need your help to get it done!

If any of you get to the Roundhouse during the 2020 session which starts on January 21st, please come visit me in Room 300 where I sit behind the half wall doing my work as a policy analyst for the Senate Public Affairs Committee.  If you have questions about the legislative process or input to share, please email me at barakwolff@msn.com. Onward…

Countdown to the 2021 New Mexico Legislature

Over the next 12 months, we will begin 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).

 

 

 

 

 

Volunteer Spotlight

Mary Kay Brady moved to Las Cruces a few years ago after spending many years in Deming, NM raising a family and working as a banker. Now retired, Mary Kay, or MK as she is also called, is ready to help lead the effort to expand end of life options and authorize medical aid in dying in New Mexico.

An avid reader of all things, MK became interested in the topic of end of life options and last year was compelled to bring fourteen of her friends and neighbors together in a book club to read and discuss C&C CEO Barbara Coombs Lee’s book, Finish Strong. This experience, coupled with her curious mind and remarkable energy, led her to seek out more information about the national movement to expand end of life options and to research the efforts taking place here in New Mexico. She signed up to be a volunteer on the C&C website last summer and is now serving as the leader of a newly revived Las Cruces Action Team. The team will hold its first organizational meeting on January 17.

MK will bring her energy and adept organizational skills to bear as she begins this year with the goal to expand the supporter base down south, particularly in the greater Las Cruces area. She also hopes to lead a team of committed volunteers in educating the community and legislators about end of life options and advocating for the passage of medical aid in dying.

If you have friends or family in the area that would like to volunteer for the Las Cruces Action Team, have them contact MK at jmranch@ymail.com.  Please join us in welcoming MK to our team.

My Story: Glenn Buckland

The power of personal stories to inspire and drive change is undeniable. This is Glenn’s story.

In late March 2019 while I was walking on the beach in Mexico, drinking and dancing to the local bands, relaxing and celebrating my 55th birthday, I had no idea that one week later I’d be diagnosed with Plasma Cell Leukemia (PCL), an aggressive and terminal stage of multiple myeloma. When my wife, Kati, took me to the hospital I was 24-48 hours from death. My kidneys had shut down, I was anemic, my liver and my thyroid were failing. The cancer had just about beat me and I didn’t even know I had it. Fortunately, my wife saved my life by urging me to go to the hospital. Within hours, I started chemo.

PCL is a rare cancer for which today’s medical community has no solution. It is a terminal diagnosis and I am undergoing chemotherapy to maintain the cancer as much as possible. I am blessed to be having a comfortable chemo experience with minimal reactivity to the medicine. I have no fear about whatever comes next and I lean into all the possibilities for my best life. The chemo and all that goes with it have stabilized me for the time being but it’s just a matter of time, according to the doctors, until the cancer becomes non-responsive.

In December 2019, my oncologist informed me that the most important number we follow has elevated and that is not the preferred direction. It’s a small enough rise that it could just be a standard fluctuation, but since I’ve not had unfavorable fluctuations before, it’s a point of concern and something to be monitored. It can mean that the new regiment isn’t working as expected or it could mean the traveler in my body is getting smarter. I am awaiting to find out more when I get my next bone marrow biopsy. My doctor has also put me on a list to be considered for a CAR T-cell therapy trial, however, I’m not sure I want to pursue it because it is a long way from being predictable, stable, or even curative.

My goal is to not become a full-time patient. I love my life, but I’m not attached to my time here; I’m focused on my quality of life. I don’t want to be addicted to just one more day, or six more months, or even another year. That’s not important to me because I know what that year can look like. As long as I continue to feel good, I will continue on treatments. As soon as the chemo becomes a struggle, I will stop. Once I stop treatment, I have been told I will transition within 6-12 months.

Regardless of how my situation moves along, I’ve come to appreciate the comfort that a medical aid-in-dying law in my home state of New Mexico would bring to me. There is tremendous, almost inexplicable, comfort in knowing that I wouldn’t have to physically suffer beyond my preferred threshold. It would also provide comfort to my survivors. Terminal illness is very difficult for everyone involved. It stresses every aspect of the patient and their caregiving community. To be able to plan and joyfully move into my transition relieves stress and grief for everyone.

Before my diagnosis I was in favor of medical aid in dying and I was sorry the bill got so close in the last legislative session but ultimately fell short. I love my life and continue to work with all kinds of modalities to find my perfect health again but I recognize the science behind my condition and accept what is yet to come. However, my wife, children, parents, siblings, friends that are having this experience with me also deserve relief from watching a loved one suffer against their own best preference.

I hope New Mexico legislators make the right decision in the future and make medical aid in dying available to me and its other terminally ill residents. It is simply an alternative for those who feel it is the right choice for them. No one would be forced to choose medical aid in dying but what a gift for those, who for whatever reason, feel this is right for them. It’s not going to be the person who doesn’t support medical aid in dying, but let’s make it available to dying individuals who want to avail themselves of the option to avoid further pain and suffering for themselves and their loved ones.

Everyone deserves a compassionate option.

Outreach Around the State

Taos, Espanola, Santa Fe, Albuquerque
A tour of north central New Mexico kicked off outreach efforts for the month of November 2019. Jan Wilson, our Albuquerque Action Team leader, joined the Third Annual Before I Die New Mexico Festival from Nov. 3-10 providing a planning workshop, which included introductions to advance healthcare directives and The Conversation Project. Jan’s educational workshop was part of a robust assortment of festival events and activities held in the communities of Taos, Espanola, Santa Fe and Albuquerque. Other activities included Death Café conversations, field trips to cemeteries, funeral homes and crematoria, movies, panel discussions, and a wide range of speakers.

The Before I Die Festival fosters reflection about how we address death and dying. Festival coordinator Gail Rubin, CT, is a death educator and author of three books on end-of-life issues. A 2020 festival is planned for weekends in October/November.

Las Cruces
Medical aid in dying has enjoyed strong support from Las Cruces with hundreds of supporters from the area signed up on our mailing list. In December 2018, Las Cruces City Councilwoman, Yvonne Torres, sponsored a municipal resolution urging the State Legislature to pass medical aid in dying. That resolution received unanimous approval from all members of the City Council. Doña Ana County legislator Rep. Michaela Lara Cadena is a strong supporter and in 2019 co-sponsored HB90, The Elizabeth Whitefield End of Life Options Act. As she runs for reelection in 2020, she is reaching out to her constituents in the area to discuss and listen to their views on end of life options.

As you read above, Mary Kay Brady came on board as our Las Cruces Action Team leader just last fall and has been busy ever since. She is building a team of volunteers who will help educate, bring awareness and advocate for end of life options. Volunteer recruitment is on-going in this part of the state, and an email letter sent to C&C supporters late in 2019 generated some new interest from those supporters who want to step up their involvement. Our current count of eight Action Team members keeps growing.

By special arrangement, Mary Kay was able to bring the national Live Well, Die Well Tour featuring author Kimberley C. Paul to Las Cruces. After a long career that took her to the set of “Saturday Night Live,” to casting for CBS daytime, Ms. Paul spent the next 17 years working in outreach and communications for hospice care. She is now touring the U.S. and sharing her story of the people she met in hospice and compassionately relating their stories of living and dying at the end of their lives.

Through her book and podcast, Ms. Paul wants to radically change the way people face the end of life. On Dec. 3^rd, a presentation was made at the Good Samaritan Society’s Las Cruces Village retirement community and another on Dec. 4^th at the Doña Ana Arts Council. Read a review of her book, Bridging the Gap, Life Lessons from the Dying, below or check out her podcast called Death by Design.

Albuquerque
On December 6, Coalition members, C&C staff and volunteers headed to the New Mexico Public Health Association’s 16th Annual Health Policy Legislative Forum at the Hotel Albuquerque. A table filled with information about advanced directives, end -of-life options and medical aid in dying along with a sign-up sheet to get on the mailing list or volunteer in NM was visited by many of the forum’s attendees and generated several opportunities for future presentations, connections and volunteers.

Rural Outreach
New Mexico is a big state. Over the years, our movement to expand end of life options has reached most, if not all, of the larger towns and cities in the state. Our list of supporters and volunteers from all corners of the state is evidence of our outreach successes.

Late last year, a review of outreach efforts was conducted to determine how best to focus our time and energy moving forward. In consultations with supporters such as Representative Lara-Cadena (Las Cruces), it was recommended to start the conversation in the rural areas of the state. Our review confirmed that in addition to maintaining our presence in the most populated regions of the state, a concerted effort to reach New Mexicans in the rural and tribal areas of the state was most needed. With this information in hand, C&C contracted with committed advocate Maria Otero to spearhead our rural outreach efforts.

The goals of this outreach include providing general education on end-of-life in the rural areas, increasing the list of supporters, identifying and cultivating champions, developing a Spanish language flyer for NM, and recruiting volunteers and personal stories from rural areas.

Starting in 2020, Maria plans to partner with the New Mexico Community Health Workers Association (NMCHWA) and provide training with continuing education units to CHWs on advanced directives and end of life options. The NMCHWA has members throughout the state but most come from and serve rural and underserved populations. For many rural residents, CHWs or Community Health Representatives (CHRs) on tribal lands are sometimes the only health providers for miles. Stay tuned for more on this effort.

Statewide Action Team 2020 Kick-off Meeting
On January 13, 2020 leaders of local community volunteer action teams came together on a conference call to share the exciting work they and their action team volunteers have been working on and to make plans for the year ahead. Action teams in Silver City and Albuquerque shared their experience and perspectives with some of the newer team leaders. Representatives from Albuquerque, Las Cruces and Silver City participated in the call.

Book Review

Book: Bridging the Gap: Life Lessons from the Dying
Author:  Kimberly C .Paul
Reviewed by: Mary Kay Brady, Las Cruces Action Team

How does one move from working in the hallways of “Saturday Night Live,” then casting CBS daytime, to hospice work?  And so begins a book interlaced with stories over the author’s 17 year career of working in hospice care.

With gentle care, the book tells the stories of people’s lives at the end of their lives. Paul manages to capture each story with compassion and caring. Sometimes the text brought me to tears and sometimes to laughter and sometimes both at the same time. Her book includes an excellent glossary along with her research notes, facts, statistics and resources.

Kimberley Paul is also the host of Death by Design podcast and is currently on a Live Well, Die Well Tour, traveling the country in her twenty-nine foot RV with her sidekick, Haven, a female German Shepherd.

This book review is an independent review from a supporter and does not imply support from Compassion & Choices or the New Mexico End of Life Options Coalition for the book or author.

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