March 2020

New Mexico End-of-Life Options Coalition receives support and works closely with national advocacy organizations, Compassion and Choices and the Death with Dignity National Center

COVID-19 Update

Due to COVID-19 and associated restrictions on public gatherings, the NM EOLO Coalition’s outreach activities, meetings, and events may be moved to online or telecommunication methods, postponed or cancelled. Please confirm ahead of time if you are planning to attend an upcoming function.

In the meantime, the following websites and phone numbers can help you to stay up-to-date of COVID-19 developments and to access resources and support:

A First of Its Kind: Medical Aid in Dying Clinical Conference

This past February, a groundbreaking gathering of doctors, nurses, social workers, chaplains, etc. convened in Berkeley, California at the first ever National Clinicians Conference on Medical Aid in Dying. The conference was the brainchild of Lonny Shavelson, MD, who has sat at the bedside of more than 200 aid in dying patients, and a respected board of advisors, that includes representatives from University of California (UC) San Francisco, UC San Diego, UC Berkeley, UC Davis, the University of Colorado, and practitioners from multiple hospices and end-of-life care organizations.

According to the organizers it was the “pressing need for clinical discussions, explorations and evidence-based knowledge about medical aid in dying” that spurred the conference. “Those on the front lines are craving knowledge of and training in standards of care and best practices—everything from prognoses to pharmacology, from the role of hospice teams to evaluations of decision-making capacity, or what “self-administration” means in the real world. In short, there is now a significant need and demand for a conference for those at the bedside.” More information on the Conference, including a full schedule, list of presenters and downloads can be found on the conference website.

A New Mexico Report
by Nancy Abell, NM EOLO Coalition Steering Committee

Four New Mexicans joined three hundred clinicians from around the country at the conference. Below are the condensed impressions of Phyllis Bergman and Elaine Brightwater, nurse practitioners, Poem Swentzell and Nancy Abell, social workers.

Phyllis Bergman
I was delighted to attend the first-ever Medical Aid in Dying Clinician Conference. The focus was on exploring those issues that are challenging for those states already working with MAID laws.  These challenges include:

  1. Training more providers to be attending or consulting physicians.
  2. Using the correct dosage and combination of drugs to achieve a peaceful and assured death, with some emphasis on why there may be variability.
  3. Having someone from outside the family (prescribing clinician, trained hospice nurse and/or trained volunteer) to be present on the day of ingestion to mix the medication and also support the patient and family.

Elaine Brightwater
The two packed days of the Clinician’s Conference met the high bar of excitement I felt when I heard that clinicians were gathering to share the wisdom of those who practice on the front line of MAID.  The scope of presentations was appropriately broad.  Some highlights:

  1. Updates on hospices’ evolution toward integrated practice with MAID.
  2. Pragmatic practice discussions.
  3. Data about different pharmacological combinations.
  4. The role of volunteers at the bedside.
  5. The creation of the American Clinicians Academy on MAID.

Poem Swentzell
There was so much information presented at the first national conference on MAID!  These things struck me the most:

  1. MAID is not necessary for a good death, and the meaning of “dying with dignity” is very personal. It is so very important to be able to understand what the patient means when she says “I want a good death.”
  2. Religious, social, and cultural implications have to be considered during ongoing conversations with patients requesting MAID.
  3. Continuous monitoring of the patient’s capacity and changes in her disease process need to be undertaken as well.
  4. Disenfranchised grieving occurs when families and loved ones feel they cannot share their story of a loved one’s death because of the possible lack of acceptance of MAID in society. They also might experience guilt and shame over either helping too much or too little.

There was a real sense of hope in the chair-to-chair audience of 300 participants that we were hearing from those who had learned from first-hand experience and wanted that learning to spread in the U.S.

Nancy Abell
Why was this conference historic?  It was the first national conference by and for clinicians, those who have prescribed MAID medications, those who have sat by the bedside of MAID patients, and the rest of us from states that have yet to authorize MAID and want to learn best practices.
Those of us from NM who were there will form the core of an implementation task force going forward. Stay tuned!

 

Advocate Spotlight: Dr. Kate Morris

Dr. Katherine Morris’ introduction to medical aid in dying happened decades ago when she voted for the Oregon law as a medical student in 1994, and again, as a surgical resident in 1997 when there was an attempt to overturn the law. It wasn’t until several years later, however, when she was asked to be a prescribing physician for medical aid in dying by a patient she had been treating for about a year and a half.

In a 2014 interview with NPR’s Robert Seigel, Dr. Morris reflected on her decision: “It’s obviously a very challenging decision for a physician…and it took a fair amount of soul-searching for me to be the prescribing physician. I talked to my family and I talked my husband and, you know, thought long and hard about it and decided that I was her doctor, and this is what she wanted and it was her decision. And so it was incumbent upon me to support her through it, and so I decided to do it.”

Her patient’s end of life journey and her own decision-making process was chronicled in the 2011 film production How to Die in Oregon, produced and directed by Peter Richardson. The documentary was released at the Sundance Film Festival where it won the Grand Jury prize for documentaries and began airing on HBO later that year. Today, you can watch the incredibly powerful film on Netflix and Amazon Prime.

Dr. Morris went on to be the prescribing physician for another patient in Oregon before moving to New Mexico in 2010. There, she served as an Assistant Professor in the Division of Surgical Oncology at the University of New Mexico Health Sciences Center in Albuquerque. It was during that time that she and another oncologist, Dr. Aroop Mangalik, joined together with Aja Riggs, a previously healthy woman with an aggressive cancer from Santa Fe, to petition the Second Judicial Court in Bernalillo County to clarify that when physicians provide aid in dying, they do not violate New Mexico law. Along with the NM Chapter of the ACLU, they argued that aid in dying is a “fundamental right” under the New Mexico State Constitution.

Morris v. NM was the seminal court case that sparked the death with dignity movement in New Mexico. While the presiding Judge Nan Nash ruled in the plaintiffs’ favor, the case was appealed and eventually made its way to the New Mexico Supreme Court  (Morris v. Brandenburg), who unanimously ruled against recognizing a constitutional right to this end-of-life option, and indicated that this matter which was both compelling and important should be considered and decided by the New Mexico State Legislature.

That happened in 2016 and in the months that followed the New Mexico End of Life Options Coalition (NM EOLO Coalition) was formed and efforts began to draft legislation to authorize medical aid in dying and introduce the bill in the 2017 Legislature. Click here, to read a complete history of the New Mexico end of life movement.

Today, Dr. Morris is working at the University of Oklahoma as an Associate Professor of Surgery. We caught up with her this month to ask about her experience here in New Mexico and to hear her thoughts about what lies ahead for the movement.

NM EOLO Coalition: How did it feel to be part of NM’s lawsuit and how disappointing was the Supreme Court’s decision?
Dr. Morris
: Being part of the NM lawsuit, while intimidating, felt like the correct thing to do. I truly believe the ability to decide for ourselves what happens at the end of our lives considering all possible options is a basic human right. It was incredible to read Judge Nash’s decision affirming this right and similarly devastating to receive the NM Supreme Court’s final opinion. At the time the Supreme Court decision was released I was watching a beloved patient suffer a particularly cruel ending as a result of recurrent cancer that she had fought with a level of true bravery I am unable to do justice to in describing. After the unanimous Supreme Court decision was rendered, stating this deeply personal issue should be addressed by the New Mexico Legislature instead of treated as a human right, I was somewhat shocked to hear a member of that very same Court tell me they have considered medical aid in dying as part of their own end of life care plan, legal or not.

NM EOLO Coalition: How do your oncology colleagues feel about medical aid in dying?
Dr. Morris: The opinions of my oncology colleagues about medical aid in dying are as varied as those of the general public. I have been privileged to have many poignant and heartfelt conversations with colleagues around this subject. While a challenging topic for most health care workers, I believe the majority of my oncology colleagues “get it.” They are not all necessarily comfortable with the idea of being a prescribing provider, although many are. However, either way, the vast majority understand that it is a reasonable thing for people to consider at the very end of life. Even so, there are several who, uniformly due to reasons of religious belief, feel this should not be a legal option. I am thankful we have been able to adopt a respectful position of “agreeing to disagree,” and appreciate the professional tone of these conversations in a divisive time.

NM EOLO Coalition: Do you think New Mexico will eventually pass the Elizabeth Whitefield End of Life Options Act?
Dr. Morris: I 100% believe New Mexico will eventually pass the Elizabeth Whitefield End of Life Options Act. I believe this because the great majority of New Mexicans I met and discussed this with while I was practicing in the state supported this right. Many who asked me about the topic were people of deep religious faith, several practicing Catholics. Citizens from all walks of life expressed agreement with the basic principle more often than not. I also believe in the committed citizens who are working towards this goal. It has been a great honor to learn from and support such dedicated, caring people.  On a personal note, I know from having had the great fortune to have met Judge Whitefield, that her deeply personal understanding of why this right matters and the eloquence with which she advocated for it will carry us forward.

 

States are the “Laboratories of Democracy”

By Barak Wolff, NM EOLO Coalition Steering Committee

Back in the early 1930s, Supreme Court Justice Louis Brandeis wrote in an oft quoted opinion that a “state may, if its citizens choose, serve as a laboratory; and try novel social and economic experiments without risk to the rest of the country.” It’s also said that states are where policy innovations can be hatched and experimented with and then spread across the nation.  In recent years we have seen or are seeing this with issues like gay marriage, medicinal and recreational cannabis, common sense firearm regulation, clean indoor air restrictions, and many, many other choices that individual states make either through laws or referenda.  Sometimes such laws gain traction and go on to become national in scope, being enacted by Congress or decided by the Supreme Court. Sometimes they remain as state-by-state decisions and yield a patchwork of laws and approaches across our country.

The laws allowing medical aid in dying are clearly being accomplished state-by-state and although progress since Oregon passed its Death with Dignity Act in the mid-1990s started off slowly, the movement is strong, has gained momentum and the direction is clear. There are now nine states and the District of Columbia (which collectively cover more than 20% of the U.S. population) where medical aid in dying is
authorized by law or permitted by a court decision.  In recent years, more than twenty additional state legislatures have been considering medical aid in dying laws.

Here in New Mexico we are actively part of this democratic process…the legislative engagement of “if and how” we should authorize medical aid in dying.  Although our campaigns in 2017 and 2019 were ultimately not successful, our collective efforts gained lots of traction, educated many fellow citizens and legislators, grew our partnerships and our network, fostered commitment and enhanced the advocacy skills of our NMEOLO Coalition.

We have also been able to build strong and productive relationships with the two major national non-profit organizations which promote excellence in end of life care and advocacy for medical aid in dying. Compassion & Choices and the Death with Dignity National Center (DDNC) work expertly, collaboratively, and tirelessly for the passage of medical aid in dying laws in the states through advocacy, technical assistance, and financial support.

New Mexico has benefited from “on the ground” support provided by Compassion & Choices (C&C) since 2012. C&C was co-counsel with the ACLU when the law suit (Morris v. NM) was initiated to clarify that medical aid in dying was a constitutionally guaranteed right in the state. When the Supreme Court ruled against us and indicated that the issue should be decided by the NM Legislature, C&C’s support grew even stronger as they organized a robust grassroots educational campaign. Today, we continue to enjoy direct assistance from C&C’s Field Director Elizabeth Armijo, NM State Organizer Jill VonOsten, Regional Campaign Outreach Manager Sam DeWitt and NM Rural Outreach Coordinator Maria Otero.  We have also had technical assistance from C&C in developing local action teams, drafting our End of Life Options Act, and direct advocacy from C&C’s CEO Kim Callinan and Medical Director, David Grube, who have both testified before our state’s legislative committees. And we are not unique…C&C is currently providing expert support in more than 30 states across the nation.

More recently, we have received excellent support from the Death with Dignity National Center based in Portland, OR. They too have expert staff, robust communications, and provide both technical and financial assistance to state coalitions. In 2018, the DDNC provided direct technical assistance to build and populate our website which we were able to utilize during our 2019 campaign to enact the Elizabeth Whitefield End of Life Options Act.  Just recently, we were pleased to receive a $5,000 DDNC mini-grant directly to the NM End of Life Options Coalition through our non-profit fiscal sponsor, the New Mexico Foundation. This award is part of the DDNC’s 2020 Dignity50 State Grant Program to help enact medical aid in dying legislation across the country. Here in New Mexico these funds will allow us to further enhance our website with some specialized communication software and more time for our webmaster.  It will also allow the Coalition to provide materials and travel support for additional outreach activities…particularly to rural areas.  The DWD National Center is now convening monthly teleconferences in which representatives from many experienced and developing state end of life/death with dignity coalitions convene to share experiences, expertise, and help the movement progress.

So, our heartfelt thanks to our national partners…and to you, our supporters and New Mexico partners.  Until next time…

 

Like Us on Facebook

The NM EOLO Coalition joined the Facebook community this month! Our official Facebook page will keep you up-to-date and informed of our Coalition activities, often in real time, as we will post pictures, stories, and activities of interest from our travels and goings-on across the state. Please like or follow our page. You can do so by simply entering “NM End of Life Options Coalition” in the search bar on your Facebook homepage, or you can click here.

 

Countdown to the 2021 New Mexico Legislature

Since January we have been featuring a countdown to the 2021 Legislative session. The purpose of the countdown is to provide supporters with actions 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, on the Coalition’s website (www.endoflifeoptionsnm.org), and on the new Coalition Facebook site.

As we remember the legacy of labor leader and civil rights activist Cesar Chavez this month, we’re also reminded that New Mexico-born United Farm Workers union (UFW) co-founder Dolores Huerta is a strong advocate for medical aid-in-dying legislation. Check out our educational video featuring Dolores Huerta here.

 

 

Outreach Around the State

Outreach updates around the state include both recent and upcoming activities and events. Because we have experienced postponements and cancellations due to COVID-19, we recommend you confirm all upcoming public events closer to the time they are scheduled.

Santa Fe
On Wednesday March 11, Barak Wolff presented to approximately 40-45 members of the Santa Fe Healthcare Network at their luncheon at the Berardinelli McGee Event Center. This group consists of healthcare providers in Santa Fe, including: care coordination; counseling; financial, legal and professional services; end of life; senior housing; in-home care; medical and therapeutic and governmental services. The topic of Barak’s presentation was End of Life: The Opportunities for and Challenges of Achieving a “Good Death”.

Barak was interviewed about end of life issues by Melinda Joy Pattison for her show, “The Melinda Joy Hour”.  It will be aired at 5pm, on Saturday, March 21st, on KTRC, 1260/103.7.  You can catch it on your radio of course, or stream it at SantaFe.com or on Melinda Joy’s Facebook site.

Nancy Abell presented to a group at the Interfaith Leadership Alliance of Santa Fe on Tuesday, March 10th.  The meeting, held at the Santa Fe Community College, was attended by about 25-30 people. The topic was medical aid in dying and Nancy shared copies of the NM Storybook with participants. The Interfaith Leadership Alliance was founded in 2007 to “address social and economic injustice in our community.” The leadership consist of diverse spiritual leaders (i.e. Jewish, Buddhists, Presbyterian, Methodist, Lutheran, United Church of Christ, Unitarian Universalist, Quaker).  As their website says, “they work together to serve the greater good by cultivating healing and transformation through advocacy, direct action, and inspiration.”

Taos
State Organizer, Jill VonOsten attended the Taos United : Taoseños Unidos community forum on February 18 at the Kit Carson Electrical Co-op. This forum is described as a “lively interactive monthly gathering designed to turn ideas into action to create a better community” and Jill found that to be true statement! Many issues are presented each month at the two-hour gathering. February’s meeting was well attended with more than fifty individuals from Taos and the surrounding communities present. The crowd was a well-informed group that seemed aware of and engaged on the issue of medical aid in dying.

After the forum, several supporters approached Jill to express their support and offer their assistance to help pass the bill. In the days that followed, other supporters in the Taos area, who were unable to attend the meeting, reached out to Jill to offer their assistance and shared their plans to reach out to their state representative and senator. Much appreciation is sent to all the Taos area medical aid in dying supporters who are helping to forward the movement in northern New Mexico. THANK YOU!

Rural Outreach
Cochiti Pueblo, NM – The first of three training sessions designed to reach rural residents and rural healthcare providers in New Mexico was held on February 26 at the Hahn Center at the Pueblo of Cochiti. The training sessions entitled: Choices for Living at the End of Life: Completing Your Advance Healthcare Directive (Advance HealthcarePlanning – The Why, Who, What and How of Advance Healthcare Directives), were offered by Albuquerque Action Team leader Jan Wilson and C&C’s NM Rural Outreach Coordinator Maria Otero through a partnership between C&C and the New Mexico Community Health Workers Association (NMCHWA).

The two-hour training hopes to: (1) provide an understanding of the importance of Advance Healthcare Planning and the various parts of Advance Healthcare Directives; 2) build confidence in the participant’s ability to complete the form and to talk about it with his/her clients as appropriate; and 3) encourage discussion of one’s values and wishes during a health crisis both in their own lives as well as their clients. The Cochiti training was well attended with twenty-six people coming from Cochiti and the surrounding communities of San Felipe Pueblo, Jemez Pueblo, Zia Pueblo and Peña Blanca.

Española, NM – A second training was held on February 28, at the Rio Arriba Health Commons in Espanola, NM, about 30 miles north of Santa Fe. There were ten people who attended this training, drawing folks all the way from Albuquerque, Santa Fe and Rio Rancho, in addition to those who came from Española and outlying rural communities of Ojo Caliente, Fruitland and Shiprock. The smaller sized group encouraged robust conversation, including sharing of thoughts and ideas and a couple of a-ha moments when it comes to advanced directives.

Anthony, NMUPDATE: Due to COVID-19, this March 18, 2020 training has been cancelled and we hope to reschedule as soon as possible.

Training Outcomes
So far these trainings have resulted in some important indicators and outcomes that help to propel our work.  Besides the general education received about end of life options and preparing to take action, one outcome is that C&C’s partnership with the NMCHWA will continue and additional training opportunities on end of life options, dementia and C&C Finish Strong tools are in the works.

The trainings are also allowing the movement to develop partnerships with Native American communities and health organizations throughout the state. This is an incredibly important outcome for our goal to build capacity for the future when medical aid in dying becomes the law and we work to ensure access to all residents of the state.

In another successful outcome, we designed the trainings and went through the administrative process to received prior approval from the NM Department of Health for continuing education units (CEUs). Our thought was to offer CEUs in order to provide an incentive to attract healthcare participants to attend the training. CEUs allow CHWs to meet their annual requirements for continuing education. The trainings did just that! Sixty-five percent of those who attended earned CEUs.

Albuquerque
The Albuquerque Action Team met this month – as they do on the first Friday of each month – at the Highland Senior Center located at 131 Monroe St NE in Albuquerque. There were ten people in attendance, including a new member that has decided to make advocating for the movement part of her life plans upon her retirement as a nurse practitioner this summer.

Coming up next month and starting on National Healthcare Decision Day (April 16), members of the Albuquerque Action Team and others will present a three week, three session class through the University of New Mexico’s Osher Lifelong Learning Institute (OLLI). The class itself is free to members – but you must sign up as a member and pay the annual fee of $20 and then register for the class. Classes will be held at the UNM Continuing Education Building at 1634 University Blvd in Albuquerque.

Sessions Topics and Presenters:

  1. April 16, 10 AM – Noon: Joan Gibson – The Conversation Project/Having the Conversation, Jan Wilson – Advance Healthcare Planning and Directives.
  1. April 23, 10 AM – Noon: Libby Hopkins – Palliative and Hospice Care, Jan Wilson – End of Life Options (including Aid in Dying and development of the 2021 Legislative Bill).
  1. April 30, 10 AM – Noon – Jane Westbrook – How to Not Leave a Mess for Your Children, Jan Wilson/Jane Westbrook – answer questions, additional discussion of topics from previous two weeks.

Silver City
The Silver City Action Team met this month and this well-established group welcomed a new member to the team! The team has planned a number of activities for the coming year – presentations to community organizations, renewing connections with supporting partners, classes on Advance Directives and Will Planning, discussion groups and using educational tools, like Death Deck and Go Wish, to engage folks in discussion about their end of life wishes.

At the end of March, Adrienne Dare, leader of the Silver City Action Team, will be interviewed on Silver City’s local KURU radio. Adrienne will be talking about our MAID bill, the growing acceptance of MAID and what’s happening in New Mexico and around the country. Efforts are also afoot for Adrienne to broadcast on KURU on April 16, National Healthcare Decision Day to talk about advance care planning. Silver City residents: Keep your dial tuned to 89.1 FM!

 

Book Review

Book Review: Dealing with Doctors, Denial and Death
Author: Aroop Mangalik, MD
Book Review by: Mary Kay Brady, Action Team Leader, Las Cruces

When asked to read and review this book I was tempted to decline. How could I, as a layperson, begin to understand the depth of this book. Having now read it, I can truly say that it is a profoundly compelling read for layperson and professional alike.

Dr. Mangalik has given an ever so human report on the fact of our immortality in a way we can all understand. As he states, “fight, hope and being strong are all forms of denial.” The medical model needs to be modified to change from treating the disease to making life better for the patient.

The importance of end of life planning and putting into words and on paper cannot be stressed enough. Medicare pays $86 to doctors who perform a half hour of discussion with patients on this topic. How many of us have utilized this?

Having listened to religious arguments on medical aid in dying in various legislatures, I was pleased to learn through this book that the Catholic church has offered other perspectives on dying. For instance, Pope John Paul II stated that “accepting death is the right course of action” and the Catholic Health Association has said “there comes a time when death is inevitable.” Further evidence in support was given by Pope Pius XII in 1957 “that good Catholics did not have to prolong their lives by using extraordinary means, such as respirators.”

It was compelling to learn that Cardiopulmonary Resuscitation (CPR) is far from the best choice and the importanceof using an Emergency Medical Services/Do Not Resuscitate (EMS/DNR) form was stressed. Too much time and money are spent in ICUs (Intensive Care Units) at a time when perhaps comfort care would be more appropriate. It really should be called the Intensive Treatment Unit because in many cases there is no benefit, plus the pain of endless procedures and the constant testing and noise of machines is far from soothing.

My suggestion having read the hardback version would be to read on Kindle where you may adjust the print size to something more comfortable for older readers like myself.

On a personal note…
Reading Dr. Mangalik’s book took me back to my own Mother’s death. In 1990 I had gone to court to be appointed my mother’s legal guardian as she declined more and more into dementia. By 1992 her life, by my standards was grim. She was living her memories of the past walking on the beach of Lake Michigan which she had done as a girl and reading with her father.

I was alerted by her care center that she had fallen and broken her hip.  She had been sent by ambulance to the hospital and being prepped for surgery. Oh, how I wish they had called me sooner ­– ­I arrived at the hospital at 2:00 am and the surgery was nearly over. The doctor came out and said all had gone well – my question was how and why did you do this?  With her dementia she will never be able to handle rehab and walk again. She did not have the mental capacity to make the decision.

Oh, that I knew then what I have learned in the intervening years.  My dear mother died about 10 days later never leaving her bed nor eating or drinking.

Editor’s note: Dr. Aroop Mangalik is a resident of New Mexico and a long-time supporter of medical aid in dying. Dr. Mangalik was part of the team of plaintiffs/petitioners in the seminal court case Morris v. NM recounted in our Advocate’s Spotlight above. Dr. Mangalik continues to advocate for MAID and serves as a founding member of the Albuquerque Action Team.

 

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This March issue of the Monthly End of Life Options Update
e-newsletter was written and edited by
Barak Wolff, NM EOLO Coalition and Jill VonOsten, Compassion & Choices NM.             

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