COVID Reflections: Policy and Political Advocacy
by Barak Wolff, NM EOLO Coalition Steering Committee
I hope all of you are managing “well enough” …whether going to work in an essential position, working from home, or “nesting” at home like many of us. It’s all fraught with uncertainties and is a constant challenge to our sense of normalcy. Beyond that, there is way too much pain and suffering for far too many people. Thankfully, here in NM our leadership seems to be taking a thoughtful and data driven approach with a proper emphasis on public and personal health, but with full understanding of the devastating economic impacts in play. Buckle up…it’s going to be a long slog back to our next version of “normalcy.”
In addition to the acute impacts of COVID 19, the virus is magnifying systemic deficiencies and deep inequities within the underlying fabric of our country, our democracy, and our sense of ourselves. It is exacerbating the racism, the lack of universal health care, our too often inhumane and counterproductive policies on immigration and criminal justice, our overly polarized political system…I could go on. We just have to look at the shocking data regarding who is dying the most during this pandemic.
An example close to home is the appalling data regarding long-term care and dying seniors. Way back on April 23rd, the Kaiser Family Foundation reported over 10,000 nursing home deaths related to COVID 19. In the 36 states that reported such data, nursing home deaths accounted for more than 25% of the total deaths in each state, with six states reporting more than 50%. Horrible and disgraceful, but understandable given the lack of underlying investment in senior issues, underfunding of support services and caregiver programs, inadequate oversight and poor reimbursement that leads to marginal or subpar quality of services, etc. Nursing home death rates are right up there with those from prisons, immigrant camps, and meat packing plants. These are just examples of historic gaps and inadequacies leading to deadlier outcomes for vulnerable populations.
So, What’s an Advocate to Do?
As citizen advocates how do we influence lawmakers to achieve our chosen priorities and policy objectives? It takes both good policy and effective political advocacy to get it done. Ultimately when it comes to passing laws, it is fundamentally a political process where competing ideas are debated, then successfully voted upon by lawmakers and finally agreed to by the Chief Executive (Governor or President). So, in addition to having a righteous and winning cause, advocates must ensure that they have a majority of the votes.
How does this reality inform our advocacy for medical aid in dying (MAID)? After 20 years of data and documentation from Oregon and 20 years of additional experience from the seven other states and Washington D.C. where MAID is authorized, the issues and the arguments from both advocates and opponents have become clear. Our basic policy positions about medical aid in dying are reasonably well defined as reflected in the various authorizing statutes and continue to evolve as we gain insight from their experiences.
So what do we know for sure about MAID? We know that it works, that it is safe, that it is utilized infrequently and that it improves many aspects of the end of life experience for many. In addition, we know that MAID is not suicide and it has nothing to do with coercing anyone for any reason. We know that no one is coerced to do anything; MAID is entirely optional for patients, providers and institutions. And, we know that it is well supported by the general public with multiple state and national polls indicating that 65-70+% of all respondents support having the option – across party lines, age groups, religious affiliation, ethnicity, etc. Certainly, our various opponents have their view and their passion against our efforts, so ultimately, we have to have the votes. And that means we need to educate, advocate and organize to support lawmakers who agree with us, and work hard to influence or replace those who do not.
In our democratic system success stems from combining excellent policy, clear data, and effective political advocacy. I want to introduce you to a new tool to help us achieve our aim. Compassion & Choices has just released a new booklet entitled: “Medical Aid in Dying: A Policy to Improve Care and Expand Options at Life’s End” which clearly articulates the policies, presents the data, and makes a compelling case for medical aid in dying. It is clearly written, comprehensive, skillfully organized, appropriately detailed, fully documented and reflects the palliative and compassionate aspects of the practice. I think the booklet will be incredibly helpful as we craft a bill for the 2021 legislative session, educate ourselves and others about MAID, and continue to engage the political process.
Right now, it’s up to us! We have the next 8-10 months to accomplish the political advocacy required to pass medical aid in dying here in New Mexico. After the June primary, we will have a better idea who all we need to support in the November elections. Please click here to let us know how you would like to help pass the Elizabeth Whitefield End of Life Options Act here in New Mexico. As we begin to normalize from this first round of the COVID 19 virus, we’ll be asking for your support and participation. It is critical for our effort to evidence diverse and statewide support to counter-balance the opposition and encourage our lawmakers to improve end of life care and options for all in our state.
Stay safe out there…
Advocate Spotlight: Joan McIver Gibson, Ph.D.
For some of us, decision-making can be a challenge even in the best of times. The pandemic has brought healthcare decision-making into focus perhaps like never before. As we consider the type of care we would like to receive if we contract the virus, a myriad of questions begins to flood the mind. Do I go to the hospital or not? Do I go on a ventilator or not? Who can speak for me if I’m unable to speak for myself? What if my healthcare proxy can’t go to the hospital with me? These are just a few of the decisions we could likely face in the event of a positive coronavirus test.
To make sense of all this, we sat down with New Mexico ethicist Joan McIver Gibson. Joan Gibson has spent the last 30 years teaching, training, and consulting in applied ethics, bioethics and value based decision-making. She founded and directed the Health Science Ethics Program at the University of New Mexico, co-founded the New Mexico Conversation Project – an effort dedicated to helping people talk about their wishes for end-of-life care, and is the author of dozens of publications on healthcare decision making.For over 15 years, Joan chaired the hospital ethics committee at the former St. Joseph Hospital in Albuquerque. It was the “patients, families, nurses, physicians, lawyers and a host of other people” that Joan credits for teaching her about values, and how to bring academic bioethics and ethics alive in a clinical setting, most often to help with difficult end of life decisions. Joan was a founding member of the New Mexico End of Life Options Coalition.
NM EOLO Coalition: What is Bioethics?
Joan Gibson: In 1972, when I started teaching Philosophy at the University of Albuquerque, a colleague in the Biology Department, suggested that she and I team-teach a course in Bioethics. It was a brand-new field (defined then as, “the ethics of medical and biological research”) whose dominant ethical issues were:
- the protection of human subjects in biomedical and behavioral research; and
- ethical issues arising in genetic research and therapy.
Over the next decade, three principles emerged as the foundational and non-overlapping principles to protect human research subjects. In addition, “informed consent” was established as a moral imperative for any research involving human subjects. These principles are defined as follows:
- Respect for persons/autonomy – Individuals should be treated as autonomous agents and persons with diminished autonomy are entitled to protection.
- Beneficence – Human subjects should not be harmed and research should maximize possible benefits and minimize possible harms.
- Justice – The benefits and risks of research must be distributed fairly.
- Informed Consent – Subjects, to the degree that they are capable, must be given the opportunity to choose what shall or shall not happen to them. The consent process must include three elements: information, comprehension, and voluntariness.
Although these principles were designed to ensure that research involving human subjects was ethical, within a few years they also found a home in hospitals and clinical settings. Ethics committees and consultants relied on them for decision-making guidance, including the elements of informed consent which still govern assessments of decisional capacity.
By the 1980s, Bioethics was defined more broadly than its origin in research, as the application of ethics (the philosophical discipline that studies notions of good and bad, right and wrong) to the practice of medicine and healthcare. Today, professionals in New Mexico and around the country, charged with crafting public policy to ensure fair access to healthcare in the age of COVID-19, still rely on these three ethical principles. Can they help us as individual patients and families planning for an uncertain medical future? Perhaps, but it’s complicated.
NM EOLO Coalition: What happens when these principles are in conflict? What do we do when two important values collide?
Joan Gibson: End of life decision-making has many such dilemmas. We must choose. How should we prioritize? For example: if I want to be resuscitated no matter what, and my physician believes that performing CPR will NOT save my life, and will do violence not only to me but to the nurses and physicians performing what they believe to be futile care…which …and whose…top ethical principle should prevail?
It was clinical situations like these that led to the development of what we call a “Values Based Decision-Making” process. Here are some of the assumptions and insights of this process:
- We make decisions, any decision, based on our values, that is, on “what matters to us.”
- Tough decisions require us to prioritize values/principles that matter deeply to us and to others. We can’t simultaneously honor all our ethical values. Decisions are difficult because they involve right vs. right, good vs. good.
- Because strong decisions must compromise some important values, even harm some of those affected, such decisions will have downsides that must be acknowledged and owned.
- Individual, professional, corporate and governmental decision-makers have the obligation to tell the truth to those who will be affected by their decisions and policies.
NM EOLO Coalition: Should advance directives focus on treatments or goals? Is this where we should start?
Joan Gibson: Back in 1975, the case of Karen Ann Quinlan launched what, even today, is the mainstay of hospital ethics consultation: conflicts arising from end of life decision-making. That same year my husband Mike was diagnosed with rheumatoid arthritis, our family’s constant companion until Mike’s death in 2011. In 1977 New Mexico passed its Right to Die Law and established itself as a national leader in Advance Care Planning…a distinction that continues to this day. For 35 years Mike, our daughter and I had many opportunities to experience different approaches to Advance Directives. What did we learn? For us it meant focusing on what quality of life means to us today (our “goals”) and understanding it would likely change over time as our circumstances changed.
In the late 1980s some Albuquerque hospital administrators, healthcare providers and guardianship agencies asked how they might best serve their homeless patients, none of whom had a health care proxy or Advance Directive. UNM’s Institute of Public Law created the Medical Treatment Guardian Program and a Values Inventory form that volunteers used to interview homeless clients and/or their companions, hoping to find out what mattered to them. We soon realized that focusing on goals of treatment instead of treatments themselves helps all of us, our proxies and providers, make better decisions. We are the experts on what matters to us! Decisions to perform CPR, put a patient on a ventilator, provide or forgo life sustaining treatment, are best made when the patient’s goals and quality of life values are understood, and communicated. Documenting and communicating our personal quality of life goals matters, especially in today’s COVID-19 resource crisis.
NM EOLO Coalition: How important is an appointed healthcare decision-maker?
Joan Gibson: For years I would ask physicians and nurses, “What helps you most as you try to match treatment decisions with a patient’s previously expressed wishes: 1) a completed and comprehensive written Advance Directive, or 2) an authorized health care proxy who has had ongoing and recent conversations with the patient about her wishes?” Invariably it was the latter. Today, nearly all Advance Directive forms begin with the appointment of a health care proxy. I suspect most of you reading this have done so. But what’s in your wallet? Do you have something in your wallet or smart phone that lets EMTs and others know who your authorized proxy is, and how to contact them? Have you asked your adult children and grandchildren if they have appointed a surrogate healthcare decision-maker? Have they communicated their wishes? We are learning that COVID-19 endangers the young and healthy as well as the elderly and infirm. Speaking as a vulnerable elder, it’s not always easy to talk to my family about my end of life treatment wishes. It is even harder to imagine the tables being turned. But talk, and listen, we must.
NM EOLO Coalition: How can we communicate to our family and health care providers what matters to us? How have you communicated your wishes to your loved ones?
Joan Gibson: I remember clearly, during difficult hospital ethics consultations with families in distress, that when families and friends had talked with each other about their wishes, especially around end of life issues, their decision-making was nearly universally easier. Not easy. Easier.
Ellen Goodman, Pulitzer Prize winning journalist and founder of The Conversation Project, says that it was her mother’s reluctance to talk about her wishes that prompted Goodman to develop user-friendly Advance Care Planning resources for all to use. Ellen is often quoted as saying: “I wish I had her voice in my ear.”
I witnessed a similar experience. My late husband received a kidney from a 17-year-old who died in a mountain bike accident in Angel Fire, NM. His family has said, “Yes, Craig’s driver’s license identified him as an organ donor. But it was the memory of his voice…a conversation we had had…that eased our decision.”
Towards that end, I have written and updated a personal letter to my family, to supplement my Advance Directive (see inset at right). I think it conveys my “voice” in a way that my loved ones can hear, when they are ready…or when they must. Others make audio or video recordings on their tablets, for reluctant family members to listen to in their own time. Our “voice in their ear” is a precious gift we give our family. Ellen Goodman reminds us: “It’s always too soon until it’s too late.”
NOTE: To assist with your end of life planning, Joan has shared her personal letter to family, “What Matters to Me….Today” (see inset above) and these helpful links:
- “Don’t Panic” Dr. Karen Boudreau’s letter to her family (see inset).
- More information on research ethics
- The Values History Form (available in English and Spanish)
- A more detailed explanation of Values Based Decision Making can be found:
- in Joan’s book: Pause: How to Turn Tough Choices into Strong Decisions
- on Joan’s website: joanmgibson.com
Recording Your Wishes on Video
Have you ever found yourself in a healthcare proxy situation where you had to speak on behalf of another and, like Ellen Goodman, thought “I wish I had her voice in my ear?” Or perhaps one of your wishes is to leave your loved ones with the guidance and clarity of how best to carry out your wishes? Well, guess what? There’s an app for that!
Technology now affords us with the opportunity to leave our end of life wishes on video that can be stored on our cell phones and available to EMTs, healthcare professionals, and friends and family at the touch of a button. A growing number of vendors offer internet-based methods for making video advance directives. One such approach is MIDEO® (My Informed Decision on Video), a “video advance directive” or videotaped statements expressing your preferences for end-of-life care. It allows your face to be seen and your voice as the patient to be heard by those listening – some of whom may be strangers – and your wishes can be recognized, respected, and more likely to result in an outcome of getting the medical care that is right for you.
Video testimonials are meant to supplement and expand upon written living wills, advance directives, DNRs, and New Mexico Medical Orders for Scope of Treatment (NM MOST). While these written documents are the standard for communicating advance care and end of life planning, there are incidences of these well-meaning documents being misinterpreted, misplaced or disregarded.
Dr. Ferdinando Mirarchi is the Chief Medical and Scientific Officer with the Institute on HealthCare Directives and founder of MIDEO®. He was also the principal investigator of the TRIAD (The Realistic Interpretation of Advance Directives) Research Series. The findings from the TRIAD VIII study, released by the Journal of Patient Safety, reveal that “we can do better for patients if we incorporate video testimony into their advance care plans.”
Here’s how MIDEO® works. First, a medical evaluation is performed. Second, you receive education with respect to emergency vs. end of life advance care planning. Third, an Advance Care Plan is created that encompasses recording a video that combines directional text on an ID card combined with technology (a QR code reader) that allows for the rapid retrieval of your video explaining your wishes in real time. With the QR code (see bottom right corner of card), one can use a smart device such as a smart phone (iPhone or Droid) to scan the QR code which will then link to your personal video.
The cost of these Advance Directive video services can vary and may be cover by insurance. The Institute on HealthCare Directives reports that many Managed Medicare and Medicare with supplemental insurance plans have covered the cost of MIDEO® in full or for a co-pay. Our own Mary Kay Brady, Las Cruces Action Team Leader, recently paid $350 to make her MIDEO® (which will be reimbursed by her Medicare plan) and has graciously offered to share her video with you here. If you have questions about this service, more information can be found at the Institute on HealthCare Directives website.
The primary election is just a few weeks away and the New Mexico Supreme Court recently ruled that in-person voting will still occur during our June Primary, which could endanger poll workers and the general public. This means: 1) you can vote in person at the polls on Tuesday, June 2nd, or 2) you can make your voice heard while protecting the health and safety of our community by voting by absentee ballot.
How to Vote by Absentee Ballot and Reduce the Spread of COVID-19
New Mexico’s Primary Election is June 2, 2020. See the New Mexico Secretary of State’s website for more detail, but here are the basics for voting in the Primary Election by absentee ballot:
May 5, 2020 County Clerks began mailing ballots to those eligible New Mexico voters who requested them. Every New Mexican will receive an application for an absentee ballot in the mail. If you haven’t already requested a mailed ballot, you may do so until May 28, 2020.
Any New Mexican voter can request an absentee ballot. However, in order to vote in the 2020 Primary Election, you must have been registered with a major political party (Democrat, Republican, Libertarian) before May 5, 2020. If you have not yet registered to vote, do so now, so that you can vote in the General Election in November, 2020.
There are several ways to request an absentee ballot, here are two:
- Fill out an absentee ballot request through the SOS online portal here.
- Contact your County Clerk in person, by phone, by mail, or by email. Contact info for all 33 New Mexico County Clerks can be found on the NM SOS website here.
REMINDER: A mailed ballot must be requested no later than May 28, 2020.
Countdown to the 2021 NM Legislature
The 2021 Legislative session is just 8 months from now! We are counting down and providing 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.
Compassion & Choices is compiling all of our resources, everything we know, all of our energy, and we’re bringing it to you.
If you haven’t already, please join our webinar series, Staying Stronger Together, for programming that we hope makes you more comfortable and empowered to navigate these challenging times.
Stay connected. We will stay stronger together.
COVID-19 Waiver Invalidates Key Provisions for End-of-life Care
One thing is for certain, COVID-19 is changing our current healthcare system. The Centers for Medicare and Medicaid Services (CMS) buried a single bullet on page 4 of a 36-page list of waivers that wipes out a 30-year policy designed to shift the balance of power from doctors to patients. The waiver invalidates key provisions of the 1990 Patient Self Determination Act that requires hospitals and other healthcare facilities to inform patients of their legal right to fill out an advance directive and to accept or refuse medical treatment.
The purpose of the change in federal requirements on a wide variety of waivers is to “free up” providers during the pandemic. This particular action waives the current requirement that hospitals must discuss advance directives upon admission to a facility. As Compassion & Choices reminds us “information equals power” and if hospitals accept the waiver, fewer patients will get fully informed end-of-life care treatment. The devastating consequence: some patients will receive unwanted medical treatment and others will not receive the treatment they want and desperately need.
This single action undermines 30 years of patient-directed end-of-life care. C&C sent a letter to Health and Human Services Secretary Alex Azar urging him to rescind the waiver.
COVID-19 is a time when our policies should be prioritizing advance care planning and empowering patients, rather than returning to a paternalistic system that rations care with no input from patients.
Online EOL Education
While the coronavirus has curtailed our in-person outreach and education efforts, our national partners Death with Dignity National Center and Compassion & Choices, have expanded their online offerings to help fill the gap. This month some exciting and relevant programming are featured on their websites and through free webinars.
Death with Dignity National Center (DDNC) – In response to questions about how to communicate with and support those who are dying during the pandemic, DDNC has compiled perspectives from a panel of individuals who specialize in death and dying. Specifically, these experts consider the practical, emotional, and philosophical issues that characterize dying and grieving today. Questions like: What does it mean to die and grieve in the midst of a pandemic? What are creative ways to tend to our sick and dying when having to distance? How do you grieve the death of someone who died alone? What are the best tools that enable people to connect and celebrate the dead when they can’t gather in person? See the DDNC website, Dying – and Grieving – During A Pandemic, to read their answers to these pressing questions.
Compassion and Choices – Since late April, Compassion and Choices has been offering a free webinar series entitled: Staying Stronger Together. Throughout the series, guests are invited to talk about navigating preferences for the end of life with the intent to help you feel more comfortable and empowered during these challenging times. If you have missed the webinars offered in April you can access the recorded and upcoming webinars here. Some of the upcoming webinars include:
- Medical Aid in Dying: Ensuring Terminally Ill People Can Access the Law (Part 2 of 2), Thursday, May 21, 3 – 4 p.m. MT
- Engaging Communities of Color: Ensuring All Americans Are Prepared for the Inevitable End of Life, Tuesday, May 26, 3 – 4 p.m. MT
- Opportunities to Expand Telehealth Use Amid the COVID-19 Pandemic, Tuesday, June 2, 1 – 2 p.m. MT
Book Review: The Conversation: A Revolutionary Plan for End-of-Life Care
Author: Angelo E Volandes, M.D.
Book Review by: Mary Kay Brady, Action Team Leader Las Cruces
There is an unspoken dark side of American medicine – keeping patients alive at any price.
In the early portion of his career, author and physician Angelo Volandes observed aggressive interventions performed on patients with advanced cases of cancer or dementia. Many faced one complication after another. This book features seven of his patients in enough detail for the reader to grasp the very different end of life experiences they had and the decisions they faced. Through his patients’ experience, Dr. Volandes illustrates how, by simply having “the conversation,” with your doctors, family and friends can change the outcome.
Dr. Volandes proposes a three-step process for you to avoid unwanted treatment and put yourselves at the center and in charge of your medical care. First, start the process by understanding your values and priorities…What does a good day look like? What fills your day with joy and pleasure? What are you looking forward to? Second, talk with your loved ones and make sure you communicate your wishes in writing or on video. And finally, talk with your health care team about your treatment options and choices. To help with the decision making, he outlines 3 standard treatment choices:
- Life-prolonging care – do everything to lengthen life (i.e. CPR, breathing machines, ICU)
- Limited medical care – IV fluids and medications, non-invasive treatment
- Comfort care – maximize comfort and relieve pain.
Dr. Volandes co-founded Advance Care Planning Decisions, a nonprofit organization that is devoted to encouraging “the conversation” and patient empowerment. Making all of this more understandable led Volandes to create this video that more clearly defines these three choices.
The author stresses the importance of honoring “the conversation” about end of life choices as a way to change the culture of end of life medicine in America. So that “patients can drive change by having greater knowledge of their options, while doctors can drive change by communicating and advocating for those choices.” He points to the state of Hawaii as one of the forward-looking states on medical aid in dying, for creating a monumental effort to change the culture to have patients at the center of, in control of, and responsible for their own well-being.
This book, The Conversation by Angelo Volandes, written in October, 2016, and Being Mortal by Atul Gawande published in October 2014 are both worth your time and money to read and re-read.
This May 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. Additional contributions by Mary Kay Brady.