End of Life Options for All
By: María Otero, Compassion & Choices’ National Latino Outreach Manager and
Jill VonOsten, Compassion & Choices’ New Mexico Organizer
Both Maria and Jill are active members of the NM End of Life Options Coalition Steering Committee.
As our nation struggles to come to terms with both a health crisis and racial division, it seems only fitting that we take time to reflect upon the role race plays in end-of-life decisions and care.
Disparities in health care have long existed for people of color and that is true for end-of-life care as well. Preparing for death is more critical than ever, especially because Hispanics and people of color are dying at a disproportionate rate from the coronavirus compared to other Americans. While the impact and data around COVID-19 and race/ethnicity are still preliminary and there are concerns of missing race and ethnicity data, we do know that end-of-life disparities are often rooted in some of the same social factors (social determinants of health) that have become obvious during the pandemic.
African American, for instance, maintain greater disease burden, higher poverty rates, limited health care access, less insurance, and the unfolding spread of the virus in cities with larger Black populations. In addition to all these factors, some Hispanics COVID-19 patients have been asked for consent to treatment in a language that is not their first, one they may not speak at all and without access to an interpreter.
We must assure that all in America are prepared for the inevitable end of life. Today, that is not the case. Nationally, people of color receive less hospice care than White Americans, who represent seventy-six percent of those who use hospice. Some of the disparities of hospice can be attributed to a lack of knowledge or access – only ⅓ of Hispanics have even heard of hospice and only ⅓ of those truly understand what hospice care is – comfort care at home that supports the family and provides spiritual care.
Black and Hispanic patients are undertreated for pain and both groups are far more likely to receive invasive medical procedures in the last month of life. Black and Hispanic populations experience much lower rates of preparation for death. Twice as many Whites than Blacks, aged 65 and older, have completed a healthcare directive. Few Hispanics know what an advance
directive is, much less have completed one or have ever discussed their end-of-life wishes with their families. For more insight into disparities, view the Compassion & Choices’ webinar: Engaging Communities of Color: Ensuring all Americans are Prepared for the Inevitable End of Life.
With regard to the use of medical aid in dying, the latest data from California where medical aid in dying was authorized in 2016, shows that while Latinos make up a full 39% of the total population they represent just 4% of Californians that have utilized medical aid in dying. African Americans represent almost 7% of California’s total population, but just 1% of those who have used medical aid in dying in the state are Black.
What accounts for these differences? Well, besides the need to provide more education and access to end-of-life care and options for everyone, other factors have been identified. Among them: a mistrust or fear of the health care system, language barriers, religious beliefs about death and dying (i.e. illness/suffering is God’s will), cultural views about planning for death (i.e. many people of color value family decision-making over individual decision-making but rarely prepare for death with the family). Cultural values of respect for hierarchy can hinder communication between patient and doctor. 6 in 10 Hispanic adults consider speaking to a medical professional difficult.
The concerns are real and we are quickly making changes to address them. Compassion & Choices (C&C), the nation’s oldest, largest and most active nonprofit working to improve care and expand end-of-life options, understands the importance of including and reflecting communities of color in order to better serve their needs. We know that establishing trust is key and we do that by showing up in communities of color, meeting people where they are (i.e. start with basic information and planning for end-of-life care), remaining open to listening (and don’t assume we have all the answers), we ask thoughtful questions, and stay authentic.
In New Mexico, C&C’s mission to provide end-of-life options for all in the state hinges upon ensuring equal access to healthcare for all. Yes, there are national and state policies that can be enacted that would expand healthcare access and improve efficiency and quality. But as many advocates for improved healthcare and improved race relations have suggested, systemic changes are necessary. How we structure our organizations, who we have at the table, how we communicate to and engage with different communities changes the system and can result in major positive outcomes. All this remains an ongoing challenge for 21st century healthcare.
To demonstrate our commitment to easing disparities in end-of-life care, the C&C board of directors took three separate movement-changing votes back in 2018. Specifically, the board approved:
- A new diversity and inclusion values statement;
- A new strategic plan, which elevated the issue of diversifying the movement to a top programmatic objective; and
- An FY19 budget, which included funding to advance our diversity, equity and inclusion (DEI) efforts both internally and externally.
Systemic changes such as these, when adopted by an organization, have an impact on the entire organization, including its most basic operations. Subsequent changes in our operations attest to that.
Since 2018, C&C has moved forward to take steps toward broadening the movement so that people of all demographic groups approach life’s end equipped with information and encouraged to claim their voice. One such step was recently taken in July 2020 when C&C created a position and hired María Otero to be the National Latino Outreach Manager to concentrate full time on end-of-life care access and disparities. Maria, who hails from New Mexico and serves on our New Mexico End of Life Options Coalition Steering Committee, is a public health professional who has spent her career promoting health equity and access to healthcare for marginalized communities, particularly Hispanic and Spanish-speaking communities.
C&C has made other strides to strengthen our internal organization so that it more accurately reflects who we hope to serve. We started internally with our own Board of Directors and staff, so that our teams reflect the rich diversity of our nation and our work continues to benefit from the expertise and variety of perspectives these individuals bring to our movement. Internally, in just two short years, we increased the racial diversity of our Board of Directors, our staff, and our previously all-white executive leadership to include members from the Asian Pacific Islander, African American and Hispanic/Latino communities in key programmatic positions.
There are many other changes in the making to improve upon C&C’s services and create a culture of inclusion. This summer, C&C published a two-year progress report that looks at the efforts taken both internally and externally to diversify the end-of-life movement in regards to race and ethnicity. Externally, we have expanded efforts to engage authentically with various constituency groups, focusing on Hispanics/Latinos, African Americans, faith leaders and the LGBTQ community.
- Early in 2018, we developed and formed our national Latino and African American Leadership Councils. These councils provide critical leadership and insight into our efforts.
- With the guidance of the leadership councils, we have built partnerships with a dozen African American or Latino/Hispanic serving organizations,
- We launched a historic collaboration with the Mexican Government’s Ministry of Health and Ministry of Foreign Affairs and the Ventanillas de Salud (Windows of Health) program to conduct a bilingual educational campaign to inform more than 1 million U.S.– based Mexican immigrants about their full range of end-of-life care options;
- We expanded outreach efforts to faith leaders including the development of a national faith leadership council with nearly 50 members from diverse religious backgrounds;
- As COVID-19 disparities in end-of-life care surfaced, we mobilized a public education effort to raise awareness about the importance of end-of-life planning to underserved populations including: a fact sheet on the disproportionate impact of COVID-19 on people of color, a bi-lingual COVID -19 toolkit for end-of-life planning, and the development of bilingual webinars, tools and resources;
- We partnered with national leaders in the field of telehealth and worked to secure important changes in the way that patients access care, which is critical during the pandemic;
- In 2019, civil rights icon Dolores Huerta joined C&C to launch a bilingual education campaign featuring online videos and digital ads promoting legislation to expand end-of-life care options in New Mexico, Nevada, New Jersey and New York. A May 2020 digital advertisement featuring Ms. Huerta resulted in almost 1000 new supporters in our state; and
- Here in New Mexico, we developed bilingual webinars to build capacity with promotoras to support individuals in their care with end-of-life information and planning. Also, we have partnered with the Mexican Consulate drive-through COVID-19 testing site to provide resources, including the C&C COVID-19 toolkit, to hundreds of participants.
While our early progress is encouraging, these are just some of C&C’s activities underway to steadily eliminate the reality and consequences of racial disparities and injustices in end-of-life planning and care. We will continue to listen, learn, innovate and take tangible, meaningful steps to create lasting change beyond this moment. Our commitment is to continue to expand upon this work, both nationally and here in New Mexico in collaboration with NMEOLO Coalition, so that all individuals are fully empowered to chart an end-of-life journey that is consistent with their values, culture, beliefs and priorities.
“Medical Aid in Living”
In late August, the Journal of the American Medical Association (JAMA Neurology) published an opinion piece with the above title. The author, Benzi M. Kluger, MD, MS, is a neurologist with expertise in palliative care, who was based in Colorado in November, 2016 when Colorado voters passed the CO End-of-Life Options Act by nearly a 2-1 margin. Being the head of a neuro-palliative care program Dr. Kluger did the homework to learn about this new option and actually drafted a policy for his department regarding how requests for MAID from neuro patients would be evaluated and managed.
In February, 2017 Dr. Kruger had his first opportunity to use the policy as a colleague from another institution referred a patient who had requested medical aid in dying. The patient was a feisty elder who had already lived with an untreatable Parkinson-like disease for five years. Dr. Kluger describes this new patient as elegant, poised and clearly in control of exactly what she wanted and why. She was doing pretty well at the moment, but wanted to find a physician who would prescribe lethal medication under the new law when the time was right. Her health declined markedly over the next year and she pro-actively entered hospice and approached Dr. Kluger to move forward with her MAID request which she would consider using after her upcoming birthday. He reports that she died peacefully at home using MAID with her family present.
Dr. Kluger goes on to share what he has learned about MAID from this first patient and others that followed. It is an eloquent, compassionate, and encouraging piece that is a must read for those involved with advocacy for expanding end-of-life options, including MAID. Here is a quote from one of the last paragraphs:
“People seeking MAID are vibrant, courageous, and thoughtful. They know who they are, define the rules of their life, and are clear on their values, including the meaning of living. My last visits with them are typically marked by a sense of clarity and peace.”
He goes on to say:
“But we are all going to die, and we will all die in ways that are unique to our persons, our circumstances, and our illnesses. What I learned from my patient was that MAID was not simply, or even mainly, about dying. It was about living. It was about hope. It was about stealing a victory from an illness that could not be cured.”
And he ends his op-ed with this: “I feel privileged to offer any help I can, humbly and without judgment, to anyone brave enough to face their mortality with eyes wide open.”
Here is a link to the Medical Aid in Living essay on the JAMA website, but unfortunately, for non-members there is a fee to read the entire article.
End-of-Life Options Education
Back to school or not? That does seem to be the question these days. While the pandemic has spoiled a lot of good plans, COVID -19 cannot stop us from learning. If you are interested in broadening your knowledge of end-of-life care and options, there can be no excuses this Fall. So, avoid having to wear a mask and the crowded classrooms and plan to attend these local and national programs that will all be offered online:
- End of Life Symposium, Webinar Series – Over a 9-month period City of Hope, one of the nation’s leading cancer hospitals, will offer this live webinar series. It is designed to educate and prepare those providing care to patients at the end of life in understanding the various influences that affect patients when the focus of their treatment changes from curative to comfort-focused care. Registration is free and continuing education credits are available.
- “The Completed Life” Conference – The Completed Life Initiative, whose mission is to address human mortality with respect, compassion, and dignity, is offering a six-session virtual conference on Thursday’s from September 3rd through October 8th, 2020. Registration is free and includes access to all six sessions. CME and CLE credits will be available for select sessions for a fee.
- End of Life Empowerment & the Faith Community: A Candid Conversation about End-of-Life Options – Compassion & Choices’ Donna Smith will moderate a panel of guests who will deliver brief remarks before opening the floor for participant’s questions. Join this Zoom presentation on September 21, 2020 from 4:00 – 5:30 p.m.
- Advocacy in New Mexico – Are you new to New Mexico advocacy? Would you like to learn how a bill becomes law in NM? Want to help pass medical aid in dying legislation in the 2021 NM State Legislature? Join Compassion & Choices Action Network (CCAN) New Mexico State Organizer Jill VonOsten, on Sept. 30 from 11:00 a.m. – 12:00 p.m. for the first of a two-part discussion on Advocacy and the New Mexico Legislature. For more information, inquire at firstname.lastname@example.org.
- New Mexico Public Health Association 2020 Annual Conference: Social Justice is Public Health! – This virtual conference will be offered for free on Friday, October 2, 2020, from 9:00 a.m. – 3:30 p.m. Register here – continuing education credits are available. There will be a presentation by the Coalition’s national partner, Compassion & Choices, on racial disparities in end-of-life care, including a discussion on how to design culturally sensitive and culturally competent end-of-life care options.
- UCSF – Fresno 2020 Integrative Medicine Virtual Symposium: Healing Interventions for the Chronically Ill and at End of Life – On Saturday, Oct. 3, 2020 from 9:00 a.m. – 1:30 p.m., a virtual program designed to increase awareness of the latest end-of-life interventions, including medical aid in dying in California, advances in evidence-based prescribing practices and more. Primary care physicians, nurse practitioners, physician assistants, allied health professionals and members of the public who have an interest in healing intervention options for the chronically ill and those at the end of life should attend this symposium. This Symposium is free for students and we are all students in regards to end-of-life issues. For more information…
- Planning for End-of-Life Care in the Time of COVID-19: YOU Need to Be in Control –Adrienne Dare, Action Team – Silver City leader, and Karen Love will present a two-session class as part of the Western Institute for Lifelong Learning (WILL) in Silver City, NM fall schedule. You must be a registered member of WILL to sign up for the class. Sessions will take place virtually on Monday and Wednesday, November 9 & 11, 1:00 p.m.- 3:00 p.m.
- Before I Die New Mexico Festival – Mark your calendars for October 30 – November 2, 2020. The Festival’s online events will be based in New Mexico and are intended to foster reflection about mortality. There will be several sessions about end-of-life issues and a panel discussion by NMEOLO Coalition members about the Elizabeth Whitefield End of Life Options Act. You can find out more about these events here, and look for our October newsletter where we will feature more about the Festival.
Make a Plan to Vote
There’s been a lot of talk about voting, but have you actually sat down and made a plan for how you’ll vote this year? Well, you might say, “I have never had to plan to vote before – why now?“
Questions have arisen about the safety of voting in person, the veracity of mail-in voting, the challenge of staffing polling places, the capacity of the U.S. Postal Service, the closing of polling places, acts of voter fraud/voter suppression, etc. etc. It is this backdrop that makes this the year to have a plan and to be intentional about voting.
When making your plan there are several places to go for information. First look at the information listed below, if you still have questions, contact your local County Clerk’s office, or when in doubt, look online at the NM Secretary of State, Maggie Toulouse Oliver’s, Voter Information Portal. Most of your questions can be answered by going to this site.
Confirm that you are a Registered Voter in New Mexico: At NMVote.org you can check to make sure that your voter registration is current.
Request a Mail-in (Absentee) Ballot Online: The NM Secretary of State portal to request an absentee ballot is now up and running! Applications for absentee ballots must be received by the County Clerk no later than 5:00 pm on Tuesday, October 20, 2020. Make sure to follow all directions on the ballot to ensure your vote will be counted.
Early Voting in Person: Early voting in New Mexico begins on October 6, 2020 and ends the Saturday (October 31, 2020) before Election Day. It is possible that your early voting locations may be different than your Election Day voting locations, so look up early voting locations here or call your county clerk for locations and dates and hours of operation.
Vote in Person on Election Day: Election Day is Tuesday, November 3, 2020. Plan now by looking up Election Day voting locations here or call your county clerk for locations and dates and hours of operation.
NOTICE: New Mexico’s County Clerks Need Poll Workers!
Help your community, make a few extra dollars, and contribute to our democracy by becoming a poll worker for the 2020 General Election. If you’re interested, fill out this form and someone from your County Clerk’s office will contact you about next steps.
Speaking of civic responsibilities, don’t forget to complete your 2020 Census! Start now by clicking here.
September 30th is the deadline!
Every ten years, since 1790, the Census is taken to assure an accurate count of everyone living in the United States. Taking an accurate count matters because it impacts future generations by informing funding decisions in our community. The Census count affects the number of representatives we have in Congress, funding for our roads, our schools, access to healthcare, and so much more. Responding to the census is also required by law.
Respond online, by phone (855-562-2020) or mail and help ensure New Mexico obtains the funding it needs to thrive. If you haven’t already responded, a Census taker may come by your household to assist you. They can be easily identified as they will be carrying a Government ID badge and a Census Bureau phone. Due to COVID-19, all census takers will wear masks and follow public health guidelines when they visit. So, if they come a knockin’, please answer the door and their questions. You’ll be surprised how little time it takes.
Q: What is the current status of medical aid in dying in the U.S. and where does the American public stand on the issue of medical aid in dying?
A: Medical aid in dying is authorized in ten jurisdictions and now more than 20% of Americans have access to this option. The authorized states include Oregon, Washington, California, Hawai’i, Montana, Colorado, Vermont, Maine, New Jersey and the District of Columbia. In just the last five years, five of these states passed legislation and a sixth, Colorado, passed the law by a ballot initiative.
A 2012 poll by New Mexico’s Research & Polling, Inc. found that 65% of New Mexicans favored medical aid in dying and 58% of New Mexican Catholics support it. Since that time, support for medical aid in dying has continued to rise. The latest Gallup Survey confirms that nearly ¾ or 74% of Americans support this compassionate option.
Opposition to medical aid in dying most often comes from individuals and organizations that cite religious beliefs. However, recent polling suggests that a majority of faith groups in the U.S. support it: including 70% of Catholics, 59% of Christians, 53% of Protestants, 70% other religions and 84% of those who describe themselves as non-religious.
Countdown to the 2021 NM Legislature
We have been featuring a countdown to the 2021 Legislative session since the start of this year. The purpose of the countdown is to provide supporters with actions they can take each month to show their support and advocate for the expansion of end-of-life options.
Action Item: World Alzheimer’s Day is September 21. Learn about the options available to stay in control of your life and care in the early stages of a dementia diagnosis with the recording of our recent webinar, Living and Dying with Dementia: Taking Charge of Your Personal Values.
Title: Elderhood: Redefining Aging, Transforming Medicine, Reimagining Life
Author: Louise Aronson
Review by: Mary Kay Brady, Las Cruces Action Team Leader
When one says “old” words like wrinkled, slow or bald; white hair come to mind. When one says “elder” words like respect, leader, power or money; experience and knowledge comes to the forefront.
And so starts this tome about aging. Author Louise Aronson uses stories from her twenty-five years as a geriatrician caring for patients. The book was a finalist for the 2020 Pulitzer Prize.
This is a most enjoyable read – using history, science, literature, pop culture to weave the story of old age – neither nightmare nor fantasy. Elderhood, in the author’s own words, is for anyone who is an “aging, i.e., still breathing human being.”
For more than 5,000 years, “old” has been defined as beginning between the ages of 60 and 70. That means most people alive today will spend more time in elderhood than in childhood. Many could be elders for 30-40 years or more. Yet while we are living longer, we have made old age into a condition to be dreaded, denigrated, neglected, and denied. We have created a society where we do everything possible to stay alive yet dread being old.
Part of what makes old age hard is that we fight it rather than embrace it. Life continues to have great meaning for many people as they age through things like learning, art and relationship building. It is important to realize that once good health is no longer attainable, then the essentials for well-being often come in the form of purpose and meaning and this must be encouraged.
Getting those health essentials would require a society and health care system that didn’t reduce old people to their bodies and ailments, but rather values health and wellness as much as it does disease. The work of modern medicine is often incompatible with both care and health, especially at end of life.
In visiting with my medical care team, I am often annoyed that they seem to spend more time with their laptop computer amending and modifying my electronic medical record than “treating” me. It is was eye opening to learn that it is a major cause of burnout among medical professionals, who spend two to three hours updating the EMR’s for every hour they spend face to face with patients, even to the point of spending pajama time at home to complete the chore.
Our current medical system is not working for us as it was designed over 50 years ago – back when you got sick and died all in one sentence and all in a few days or weeks. Now, people die in old age usually from a protracted chronic illness after being disabled for an average of two to four years and without any reliable caregiving system.
When Aronson was asked for a recipe for old age, her response was a list: good genes, good luck, enough money and one good kid, usually a daughter.