End of Life Care and Options for All
It’s been about sixteen months since End of Life Options New Mexico was incorporated as a nonprofit and began its work of providing information and support for all end-of-life options and assisting in the implementation of the Elizabeth Whitefield End-of-Life Options Act for all New Mexicans.
The EOLONM Board of Directors supported by trusted expert Advisors, dedicated volunteers, and generous donors, have made great strides in conducting public education and outreach, providing supportive services to clients and their families, and assisting health care providers and agencies with education and training about end-of-life options, including medical aid in dying. In the last fifteen months, over 170 qualified New Mexicans have used our new law to end their suffering and achieve a peaceful death.
As EOLONM continues to develop our operations and look ahead, one of our highest priorities and a next major challenge is to expand our reach to better serve our entire state. Since the beginning, our organization has sought to bring the big picture of end-of-life care and options to all New Mexicans because we believe that everyone deserves access to end-of-life information and care.
It’s an ambitious aspiration because it involves reaching all corners of this geographically large state and bridging barriers like limited access to health care and high speed internet, language barriers, and varying cultural/religious beliefs about life, death, and dying. It also entails listening to individuals and communities and learning more about the inequities New Mexicans face in accessing end-of-life care and services. Understanding how factors such as race, ethnicity, gender identity, geographic location, culture, and socioeconomic status contribute to disparities is a key to our future success.
Because none of us are immune from death, EOLONM is fully committed to the premise that all of us deserve to understand our right to self-determination and have access to all types of end-of-life care. This is evidenced in our expressed collective values that bring us to end-of-life work and which compel us to demonstrate: Compassion for others’ experiences; being Inclusive of our state’s diverse population; while showing Respect for each individuals end-of-life choices; supporting them in a Non-judgmental manner; with steadfast Integrity.
Diversity, Equity and Inclusion (DEI)
In recent years, many organizations have begun to adopt DEI goals to express their desire to serve diverse audiences, overcome issues that limit access or understanding, and/or remove barriers that lead to inequities in terms of diversity, equity and inclusion.
DEI is a key to fulfilling our EOLONM mission, vision and values, but what exactly do we mean when we say diversity, equity and inclusion is a priority for our work?
Last Spring, with the guidance of EOLONM’s Equity and Inclusion Advisor Revathi A-Davidson, the EOLONM Board of Director’s considered how best to put our DEI intentions and principles into practice. We began by defining the terms in the context of our work:
- Diversity: We believe that we can fulfill our mission by drawing on the skills, talents, and perspectives from a broad and diverse group of individuals. We welcome diverse viewpoints which are based on varied life experiences, previous social sector interactions, experiences with death and dying, and varying cultural backgrounds. We believe these individual differences strengthen the collective voice of EOLONM and bring perspective to our deliberations and decision-making. We will continue to seek out diverse and trusted voices to help carry our message, empower, and inform diverse communities; seek to understand traditions and perspectives that will inform our work; and, together develop our organization to be more responsive to the needs of more people.
- Health Equity: Understanding the difference between equity and equality is a key component in the effort to reduce health disparities among vulnerable populations. While equality means each individual or group of people is given the same resources or opportunities. Equity recognizes that each person has different circumstances and allocates the resources and opportunities needed to reach an equal outcome. Being intentional about health equity will allow EOLONM to best prioritize resources and address systemic health inequities which have affected New Mexicans whom we wish to serve.
- Inclusive: All effective organizations work to build a culture of trust, candor, and respect — none of which is possible without a culture of inclusion. EOLONM seeks to establish such a culture whereby all those who are affiliated with it are encouraged to bring their perspectives, identity, and work/life experiences to their service. An inclusive culture welcomes and celebrates differences and ensures that all are equally engaged and invested, sharing power and responsibility for the organization’s mission and work.
Implementing Our DEI Principles
With those definitions clarified and applied to our work, the EOLONM Board then identified four areas of focus that will begin to put our DEI principles into action. They are:
- ensuring language access for those whose primary language may not be English;
- using culturally-sensitive approaches in our work with New Mexico’s diverse communities and cultures (e.g., understanding the importance and impact of faith, spirituality, and culture on end-of-life care decisions in communities of color);
- seeking various solutions to make end-of-life care and medications affordable for those who may not have the financial means to avail themselves of the Elizabeth Whitefield End of Life Options Act; and
- identifying, training and learning from communities, trusted leaders, and volunteers in rural and under-served communities to ensure that the work of EOLONM is responsive to their needs and priorities.
In the short time since we identified these areas of focus, we have been able to make considerable headway. For instance, a recent partnership with Salud Morena, a NM-based nonprofit focused on reducing health inequities, will create opportunities to educate Community Health Workers (CHWs) on advance health care planning and end-of-life options, including medical aid in dying. Because CHWs are often the initial health connection in rural communities, we are hopeful that this partnership will expand our reach to serve more rural and underserved New Mexicans. In addition to this exciting development, this newsletter highlights other recent progress made in the focus areas.
It’s only the beginning. Our DEI principles have been evident in the work we have accomplished so far, but more importantly, they will continue to be a driving force as we grow as an organization. We welcome you to join us on this journey to ensure end-of-life options for all.
The effort to ensure access to information on end-of-life care and options for those whose primary language may not be English is underway.
Earlier this summer, EOLONM launch a new translation tool on our website: www.endoflifeoptionsnm.org. You will find this tool in the upper right corner of every webpage on our site. The languages offered were selected based on availability and the most common written languages used in New Mexico, including: Spanish, Vietnamese, Filipino, French, German, Russian, Arabic, and Chinese (simplified).
While these types of translation tools are not perfect – they can sometimes be limited in their translations (for example, they do not offer the traditionally spoken New Mexico languages of Navajo, Keres, Tewa, and others) and can contain grammatical errors – they are beneficial to those who need the information quickly without relying on others to translate. But we know that somethings can be “lost in translation,” so we ask those of you who are proficient in one of the languages to try it out and drop us a note at firstname.lastname@example.org to let us know how our translations can be improved.
Reaching Spanish Speakers
Did you know that almost 29% of the New Mexico population, aged 5 and older, speak Spanish at home?
- Grant to Reach Spanish Speakers – EOLONM recently received a grant from our national partner Death with Dignity to help reach Spanish-speaking New Mexicans with information on end-of-life options in their own language. Through this grant we were able to translate and print the EOLONM brochures into Spanish and funds are now available to distribute these brochures to communities where Spanish is the predominant language spoken.
If you or your organization have need for Spanish brochures, please reach out. You are welcome to download the pdf in Spanish (descargar el folleto en Español) or we would be happy to mail you a hard copy or arrange to get you multiple copies for your clientele.
- Spanish Translation of End of Life Options Materials & Forms – We have received excellent assistance from two partners in translating some key informational materials on end-of-life options into Spanish.
- Compassion & Choices (C&C) – We would like to thank our national partner C&C and specifically Patricia González-Portillo, C&C’s Senior National Latino Media Director, for her assistance in translating materials so that all Spanish-speaking and reading New Mexican’s can understand and know how to access medical aid in dying.
- University of New Mexico Medical School – Much appreciation goes to one of our newest local partners, Verónica Plaza, M.D. MPH, Director for Diversity, Equity and Inclusion, and her medical students at the UNM School of Medicine, for their translation work. Dr. Plaza and the UNM medical students have already translated several informative advance planning documents into Spanish and are now in the process of translating key end-of-life informational materials in a number of languages.
So far, EOLONM with the help of our translation partners, have completed translations into Spanish of the following documents:
- End of Life Options New Mexico Brochure, Spanish
- Nuevo México – Introducción a la Ayuda Médica Para Morir/New Mexico Introduction to Medical Aid In Dying, Spanish
- Ordenes Médicas para Opciones de Tratamiento de Nuevo México/NM Medical Orders for Scope of Treatment Form (NM MOST Form), Dual Language: English/Spanish
- Solicitud de Medicamento Para Finalizar Mi Vida Pacíficamente/Request For Medication To End My Life in a Peaceful Manner, Dual Language: English/Spanish
For those of you who wish to learn more about the importance of these issues, here are links to two recent articles:
- B. Alexander, Sept. 22, 2022, ‘Why Don’t More People of Color Receive End-of-Life Care,’ The Philadelphia Inquirer.
- R. Brown, Sept. 26, 2022, ‘Report: Latino Families Should Prioritize End-Of-Life Conversations,’ Public News Service.
Bilingual Volunteers Needed
We welcome those who are bi- or multi-lingual and are proficient in speaking and writing a language in addition to English to join our cadre of volunteers. There are opportunities to provide presentations in other languages and to assist individuals and families in cases where translation is needed to access information and services. Specifically, we are looking for proficient speakers of Spanish, Vietnamese, and any of the state’s many indigenous spoken languages, including Navajo, Keres, Tewa, Towa, etc.
Contact us at 505-393-1321 or email@example.com if you can help in this way.
Removing the financial barriers that make it difficult to access information, learning about the different types of care we might want or need at the end of life, and then accessing those services, are all crucial considerations in serving all New Mexicans. In addressing our goal of affordability, the list below highlights the gains EOLONM has made so far and those still in progress:
- EOLONM’s Medication Assistance Fund – In September 2021, EOLONM established a Medication Assistance Fund for eligible individuals who need assistance in purchasing the prescription for aid in dying medications. The prescription can run between $500 – $700 and when you consider the other medical costs that often come at the end of life, this cost can be prohibitive.
- Medicaid coverage of medical aid in dying medications – Over the last year, EOLONM has been engaged in discussions with the State of New Mexico to make State Medicaid funds available for Medicaid eligible adults to use towards covering the cost of aid in dying medications. This idea has received approval from the state and is now in the process of defining the rules for Medicaid reimbursements.
- Linda Vanzi End of Life Options for All Fund – In the last newsletter, we reported on the development of a fund to assist with our work to address health inequities among New Mexicans. Three long-time supporters, Rob Schwartz, Maureen Sanders, and Frank Spring, conducted a peer-to-peer fundraising campaign that is raising funds specifically for the purpose of assuring access to end-of-life information, resources and referrals for all New Mexicans. You can read more about the Vanzi Fund in our July 2022 newsletter. If you would like to contribute to the Linda Vanzi End of Life Options For All Fund, please click here. Note – “Vanzi Fund” – on your credit card payment or check.
If you would like more information about these efforts, please contact us at 505-393-1321 or write to us at firstname.lastname@example.org
September marked an important milestone for EOLONM. That’s when we brought on our first contracted employee! Robin Swift was hired on September 1st as the part-time EOLONM Administrator/Dispatcher to oversee our client support dispatch function and support our volunteers and Board of Directors with administrative tasks.
Robin comes to EOLONM with a long list of relevant personal and professional experiences. She lives in Albuquerque and holds a Master’s in Public Health – Health Education and Administration from Emory University. Her extensive background managing health programs and services includes experience at academic, tribal, and state government agencies, nongovernmental agencies, and health facilities. Robin is a skilled facilitator, trainer, and grant writer and has developed and conducted needs assessments and evaluations that target and measure program effectiveness.
Like many of us at EOLONM, Robin comes to end-of-life work with a number of personal experiences that have shaped how she thinks about death and dying and a compassion heart to bring caring support to people’s death experiences. Robin shared some thoughts about her approach to the new position: “Navigating end-of-life care takes courage, fortitude and a willingness to advocate for the people you love and your clients. I am here to support the navigation work with the kindness and resourcefulness it requires.”
Welcome Robin! The EOLONM family is so happy to have you join the team.
We are making efforts to reach all New Mexicans! EOLONM volunteers have made informative presentations and conducted outreach in dozens of locations across the state this year. Here are a few highlights from the last month:
- Las Cruces, NM, 9-14-22, presentation was made to the Interagency Council
- Jemez Springs, NM, 9-17-22 – presentation to Jemez Aging in Place
- Eldorado, NM, 9-21-22 – information table at Eldorado Community Health Fair
- Hanover, NM, 9-24-22, information table at Mimbres Valley Health Fair, San Lorenzo Elementary School
- Statewide (Virtual), 10-6-22, presentation with Salud Morena to Community Health Workers statewide.