Passing the Elizabeth Whitefield End of Life Options Act: The Road Ahead
By Barak Wolff, Coalition Steering Committee member
It’s now July and the pandemic surges on in our country with a few pockets of hope and improvement surrounded by numerous seas of increasingly positive tests, alarming hospitalization and ICU admission rates, and failed citizenship and leadership at many levels. Not what we hoped for our country, but nonetheless we persevere. Many of us, the more fortunate ones, are able to stay home and socially distance, venturing out only for necessities while many others, our essential workers, take risks for themselves and their families every day. When will our lives get back to normal? Perhaps a new normal?
Yes, uncertainty abounds in many aspects of our lives, but please know that planning and preparations are underway to successfully enact the Elizabeth Whitefield End of Life Options Act (EWEOLOA) in the upcoming 2021 legislative session to authorize medical aid in dying (MAID) in New Mexico. The NMEOLO Steering Committee met in late June via Zoom and spent time discussing and brain storming strategies and activities that will help us pass the EWEOLOA. Let me share some of our deliberations.
Grassroots and Grasstops
We started with a discussion of the need for both “Grassroots” and “Grasstops” Advocacy, which basically means from the bottom up and from the top outward. This approach is particularly important for advocacy on a statewide level since we are served by 112 lawmakers with each Senator representing about 50,000 persons and each Representative about 30,000. To reach out to these state congressmen and women requires involving as many grassroots supporters as possible since it is always best for a constituent, a voter from their district, to approach a given lawmaker, particularly regarding very personal and sensitive issues like medical aid in dying.
Grassroots advocates are of the community and can write or email their legislator to tell a story, express their support for the cause, share explanatory materials, and then ask for their position on MAID and any other issues that they are supporting. This feedback is critical to our coordinated advocacy efforts during the actual legislative session. In normal times, we would encourage grassroots supporters to visit in person, perhaps have coffee with their legislator in a local cafe. But, given the age of COVID 19, perhaps the closest they can get is to participate in a virtual town hall or debate and try to pose a question about MAID. Click here to access the Secretary of State’s website, where you can find the mailing address, best email address and phone numbers for each candidate in the general election by District.
The “grasstops” leadership in our movement are EOLO Coalition Steering Committee members and experienced supporters/advocates who often have long term personal connections with key legislators and can reach out to them directly based on existing relationships. These grasstops advocates have generally spent time at the Roundhouse, have often participated in Lobby Day activities and are knowledgeable about MAID and the New Mexico legislative process. They are also proactively advocating for the cause by actively networking with other partner organizations, key stakeholders and individuals, educating anyone who will listen about MAID and seeking support and endorsements that will be invaluable during the legislative session.
Phases of Advocacy Ahead
As we think about the road ahead, it seems helpful to divide our effort into three distinct phases for our advocacy efforts. Phase 1, July-November 3rd, is “Pre-General Election” when most candidates will be working hard to reach out to their constituents in order to listen to peoples’ concerns/priorities and influence voters to support them. Phase 2, Nov 4-January 15th, which we can call the “Pre-Legislative Session” is when we will know exactly who our lawmakers will be. And Phase 3, January 19-March 20th, is the actual 60-day “Legislative Session.”
Between now and the General Election our collective efforts will be focused on trying to contact all candidates, introducing ourselves and explaining our desire to enact medical aid in dying here in NM…just as advocates have in 10 other jurisdictions covering more than 20% of the U.S. population. In our meeting, we agreed that every one of us and all our supporters should contact all the specific candidates in our district to either educate them about MAID and ask for their support, or, if we know that they are supporters, to thank them for that support. If this happens, we will have “touched” every candidate and will have a better idea of where the votes are likely to be when they meet in Santa Fe. If you have never done this kind of advocacy before but would like to help pass the EWEOLOA in 2021, please see the article on Advocacy below about exactly how to reach out to educate and ask the candidate about their position on MAID.
Also, during Phase 1 Coalition Steering Committee members will be following up with individuals and organizations that have supported us in the past to update them on MAID developments and seek their formal support for the upcoming session. We will also be drafting the actual Elizabeth Whitefield End of Life Options Act to be introduced in 2021. It will be closely based on our final 2019 bill (House Judiciary Committee Substitute for House Bill 90) but may have some changes and edits reflecting some of the best practices and recommendations from other states and our national partners. This activity is already underway.
In Phase 2, following the General Election when we know exactly who the lawmakers will be, we will want to follow up with the winners to reinforce our advocacy for medical aid in dying and offer to provide additional information or a personal contact if they want to better understand the issue. During this time, the EWEOLO Act will be finalized and hopefully pre-filed in the House of Representatives so that it can be scheduled for hearings and considered by House committees as quickly as possible once the session begins. Also in Phase 2, we will begin to organize our advocates, experts, and story tellers who may provide testimony during committee hearings. More information will follow about these important activities.
And finally, Phase 3 is the legislative session itself. Of course, depending upon developments and progress with the coronavirus pandemic, it is unclear how much of the session may be accomplished virtually, as it was during the recent Special Session. It was frustrating for all involved, but ultimately, they were able to have committee meetings, floor sessions, take votes, and pass the budget and several important bills. What they were not able to accomplish was to provide a way for the public to actively provide their input to the process. The public could watch most of the legislative deliberations and votes through the legislative website streaming page, but efforts to actually allow verbal input were not successful in the Special Session. Given so many uncertainties, opportunities for grassroots advocacy and participation during the actual legislative session will be addressed when we get closer and have a better idea of how the 2021 session will be accomplished.
So, those are some of the activities and strategies that we will be working on for the next 6+ months. The more grassroots advocacy and participation that we can generate the better the chance that we can pass the EWEOLO Act in 2021. Until next time…stay safe out there!
Hospice and Medical Aid in Dying (Part II)
By Libby Hopkins, MA, BSN, RN, CHPN, CHPCA
Editor’s Preface: This month we continue with Part II of our two-part look into the critical end-of-life service known as Hospice. Last month Coalition Steering Committee member, Libby Hopkins, explained the origin and philosophy of Hospice, the services available and what to consider when searching for a qualified hospice provider. This month, we look at how Hospice has evolved and adapted in the ten jurisdictions where medical aid in dying has been authorized and what New Mexico hospice providers can learn from these states.
Libby Hopkins is a Registered Nurse and holds a BS in Nursing, a Master’s in Organizational Management and a Graduate Certificate in Applied Thanatology (the study of death, dying and mourning). She maintains certifications as a Hospice and Palliative Care Nurse, and a Hospice Compliance Professional. Libby is currently the Director of Quality Improvement for Hospice of New Mexico, but her long career consists of serving in leadership, clinical and educational roles for multiple NM hospice organizations, including NM VA Healthcare System, Presbyterian Home Health and Hospice, and Hospice of the Sandias, among others. In addition to serving on the Coalition steering committee, Libby is active with the Conversation Project and volunteers with the Chevre Kaddisha: participating in the holy washing ceremony for Jewish bodies at local mortuaries. She is a community presenter (and has presented nationally and internationally) on topics related to serious illness, palliative and hospice care.
Hospice and Medical Aid in Dying
Last month, in Part I of this article, I outlined the history of hospice – its origin and philosophy. The patient-centered ideology of “Care, not Cure” exists to promote quality of life during the time an individual has remaining, whatever “quality” means to the individual and his or her loved ones. With more states authorizing or considering legislation to legalize the use of Medical Aid in Dying (MAID), many hospice organizations find themselves considering this self-directed care tenet in the context of MAID, and contemplating the role they may choose to play in supporting patients who can legally choose this end-of-life option.
To date, nine states (Oregon, Washington, Montana, Vermont, California, Colorado, Hawaii, New Jersey, Maine) and the District of Columbia allow MAID. Oregon’s Death With Dignity Act, which permits terminally ill state residents aged 18 years or older to make a voluntary informed choice to be prescribed life-ending drugs by a physician, was first passed 25 years ago. The Oregon legislation, as well as laws in other authorized jurisdictions, require the publication of annual statistical reports on the information of patients and physicians who participate in MAID. Now, with decades of experience and reporting, Oregon’s record offers insight for other states, like New Mexico, which plan to introduce MAID legislation.
While studies show some variances in usage from state to state, Oregon reports that almost 88% of patients who use MAID are under hospice care. Prescriptions for the medication used in MAID may be written by hospice physicians, however this is not always the case and all eligible patients, whether receiving hospice services or not, are eligible to obtain a MAID prescription. Hospice agencies, however, need to understand and accept the reality that once MAID is legal, patients in their care may decide to opt for it and they must be prepared to respond accordingly.
Given that the hospice ethos is so steeped in patient self-determination, why might a hospice choose not to participate in MAID?
In states where MAID has been authorized, not all hospices, or providers within a hospice, feel comfortable being involved in the process. There are often clinical concerns at the outset because of lack of training of providers on what medications to use and how to educate the patient and loved ones on what to expect after ingestion of the dose (timeframe, side effects, certainty of lethality, etc.). There are also business concerns that communities or referral sources who oppose MAID may no longer wish to refer their patients to a hospice that participates in MAID. There can be concern by the prescribing doctor or hospice itself that they will become known as “the one that does MAID”, and thus be referred to and called upon disproportionately for MAID requests.
There may also be moral, ethical or religious objections by the hospice itself, and by other necessary participants such as pharmacies. Some hospices have national overseeing bodies which may, for continuity purposes or other reasons, create national or regional policies to prohibit their providers from writing MAID prescriptions in their roles within the hospice, and/or prohibit hospice staff from being present at a MAID death. In all states that have authorized MAID, there is an “opt-out” provision so that no organization, no facility or no individual health care provider is required to participate in the process in any way. In accordance with this, New Mexico has included a strong conscience clause in its proposed Elizabeth Whitefield End-of-Life Options Act.
Here in New Mexico, there is interest, curiosity, and some anxiety among hospice agencies and other medical providers about what to expect if MAID legislation passes. The proposed New Mexico legislation, like those in authorized jurisdictions, requires that patients be of sound mind, adult age, terminally ill, that the terminal diagnosis (not the medication ingestion) be recorded on the death certificate, that the patient must be physically able to self-administer the medication (no one else can legally administer it), and that the provider or any hospice staff are not required to be present or participate in any way. Patients may, however, request the presence of various hospice staff members and they may choose to be present for support, if allowed by the agency.
What are some benefits of hospice organizations participating in the MAID process when requested by patients?
A primary advantage for hospices that participate in the process and honor patients’ requests for medical aid in dying is that they are practicing in concert with patient self-determination and individualized care which is so germane to the hospice philosophy.
According to a Kaiser Family Foundation poll, 7 in 10 Americans say they would prefer to die at home. More and more Americans are turning to hospice services to make that possible. And now with more than 1 in 5 Americans having legal access to MAID, more people are likely to achieve the home death they wish. A hospice’s participation in MAID supports the ethical pride that exists in neither abandoning an existing patient nor declining care to a prospective patient based on his or her wishes to legally end their life and avoid needless pain and suffering.
For the hospice patient, in addition to the obvious advantage of continuity of care, another benefit is having a trained interdisciplinary team available to provide holistic care and support throughout the process. This may include a social worker, counselor or chaplain who facilitates discussions with the patient’s family if the patient wishes, and asks relevant questions such as when, where, with whom the patient wishes to die, and assists with other logistics as requested by the patient.
The MAID experiences in authorized states indicate that reluctance or refusal of hospice organizations to participate in MAID, as well as genuine conscientious objections and fears, are typically more prominent early in the implementation phase. A primary factor behind this hesitancy is often the lack of knowledge and understanding of the main elements of the law.
Many of these concerns diminish over time. At least that is what nurses, social workers and a chaplain from California and Colorado have explained at several recent medical conferences I have attended. In those states, providers shared that the ease with which hospices participated increased significantly over time. They credit that acceptance to knowing what to expect – having a greater understanding of the safeguards included in the laws, coupled with no experiences of abuse or inappropriate use of the practice of MAID. They have been able to follow the progress of other hospices in authorized states, learning from those organizations’ experiences and seeing implementation kinks worked out, which they report has helped them decide to participate and feel more comfortable with the process.
In a recent Medscape article, Senior Clinical Director Laura Koehler is quoted about her hospice’s acceptance over time. She reports that what helped change attitudes was that there were no negative experiences; all deaths went very well. “Time and time again I’d hear that the death went beautifully,” she said. “We are no longer apprehensive, and we are comfortable with the program.”
In another article, seasoned New Jersey physician, Jessica Israel, talked about acceptance over time and shared what it was like for her to write her first MAID prescription. She acknowledged that her hands were shaking as she was writing it, despite her absolute belief in her patient’s right to this decision. She understood the magnitude of her decision to participate in his self-directed death by ingesting the medication she had prescribed and says the importance of her action has stayed with her. She reports he had a peaceful death surrounded by his loved ones while sitting in his favorite chair by his red bookcase. Interestingly, the hospice that Dr. Israel worked for at the time had initially planned to discharge this patient because they did not support patients participating in MAID, but ultimately agreed to keep him on their service, allowing him to continue to receive care from his hospice team until the end, and allowing his family to take advantage of the hospice’s bereavement services following his death.
In a column written for MD Magazine®, Dr. David R. Grube, National Medical Director for Compassion and Choices, says that “those of us who have participated in the practice of medical aid in dying have a different perspective than those who theorize about it. All of them are sincere, all are compassionate, none of them take this action lightly, and none have reported instances of regret or depression.” Dr. Grube also asserts that the practice of MAID has led to improvements in end-of-life care in Oregon where he lives. Indeed, studies of Oregon show that palliative care services spending and patient satisfaction have risen since 1998, when MAID became legal (Cain, 2016). Dr. Grube points out that this can be attributed to the fact that there are now much broader discussions of end-of-life care issues and more frequent conversations between physicians and patients about their end-of-life care wishes and goals, improving doctor-patient relationships and the awareness of, and participation in, hospice and palliative care services.
In conclusion, it is clear that there is a major role for hospice in medical aid in dying and that will be the case when MAID legislation passes in New Mexico. While hospices are not required to participate in MAID, those that choose to do so are most successful when they are prepared with good planning and infrastructure, comprehensive physician and staff education, and staff bereavement support for those caring for patients who have used MAID. It is also evident that the longer MAID is in effect, the more comfortable hospice teams and providers become with supporting those patients in their end-of-life care who choose to use this option.
Resources and References:
- National Hospice and Palliative Care Organization
- National Association for Home Care and Hospice
- Hospice Foundation of America
- Should Medical Aid in Dying Be Part of Hospice Care?, Medscape, Feb. 2020.
- A Day Like No Other: The first time I helped one of my patients die, ROI – NJ.com, Feb. 5, 2020
- Ten Facts About Medical Aid in Dying, MD Magazine on HCP Live ®, August, 2018
As advocates, when we conduct outreach, presentations and meet with residents and lawmakers, we find that people are curious and want to understand more about end-of-life options and care. This month we will begin to feature some of the frequently asked questions we so often hear – everything from how to talk to your doctor or family, to what laws and safeguards are in place, to where and how you can access resources to assist in planning and decision-making. We will share actual questions from New Mexicans as well as questions posed to our national partners, Death With Dignity and Compassion & Choices.
This month we will start with the most basic query, but if you have a specific question about end-of-life care or medical aid in dying, please click here and don’t hesitate to ask your question in the message box.
Q: What is Medical Aid in Dying as an end-of-life option?
A: Medical Aid in Dying (MAID) is an end-of-life option that allows eligible terminally ill adults to voluntarily and legally request and receive a prescription for medication to hasten their death. The specific practice of MAID is governed by state law and is currently legal in California, Colorado, District of Columbia, Hawaii, Maine, Montana, New Jersey, Oregon, Vermont, and Washington.
Each month of this countdown, we give supporters actions they can take to prepare for and show their support for the passage of medical aid in dying legislation. We’re halfway to the start of the 2021 New Mexico legislative session.
Action Item: If you believe, as we do, that it’s our right to decide how much or how little medical treatment we want in our final days, please join our campaign today. Click here to take action and show your support.
Speaking of taking action. Now that the June Primary Election is over and we know which candidates will be competing for New Mexico House and Senate seats in the November 3rd General Election, this is the time for New Mexicans to ask their candidates where they stand on the issue of medical aid in dying.
Reaching out to candidates of all parties is not only a great way to find out their positions, but it also provides an opportunity to educate them on the issue and bring them up-to-date on the fast developments of the movement to authorize MAID. Just since the last Presidential General Election in 2016, four more states (CO, HI, NJ, ME) and the District of Columbia have passed MAID legislation, resulting in about 1 in 5 Americans having access to this option.
Action Item: Steps to participate in the Ask The Candidate Initiative:
- Become familiar with Compassion & Choices’ Action Network Ask the Candidate toolkit.
- Identify your districts and current lawmakers.
- Obtain the contact information of the candidates running in your NM State House and Senate districts.
- Reach out to all State House and Senate candidates, including incumbents, in your district via email, phone or mail. Or research their online candidate forums or virtual town halls – events are often listed on the candidates’ websites, social media and state party websites.
- Ask the candidate/incumbent their position.
- Report back what you learned by emailing our NM Organizer, Jill VonOsten at email@example.com. And please feel free to contact Jill for assistance on any of these steps.
Massachusetts Bill Moves Forward
On May 29, for the first time since its introduction nine years ago, the Massachusetts End of Life Option Act advanced from the Joint Committee on Public Health, in an amended version. Both the House and Senate bills now await consideration by the Joint Committee on Health Care Financing. The bill is sponsored by a total of 67 State Senators (20) and Representatives (47).
This marks a huge advancement in the campaign to expand and protect end-of-life care options in Massachusetts and across the country. It is the first time a legislative committee approved the bill since it was originally introduced by Representative Louis L. Kafka in 2011.
The challenges presented by the COVID-19 pandemic caused the standard legislative process to be modified by an Executive Order signed by the Governor, and the committee was permitted to vote on the bill via email over the course of about 24 hours on Thursday, May 28, to Friday, May 29.
May’s successful committee vote followed a string of letters to the editors published in local state newspapers and supportive editorials from across the state, including the editorial boards of the Pioneer Valley’s Daily Hampshire Gazette and the Pittsfield-based Berkshire Eagle.
Title: The Five Invitations: Discovering What Death Can Teach Us About Living Fully
Author: Frank Ostaseski
Review by: Mary Kay Brady, Las Cruces Action Team leader
Death is the elephant in the room. A truth we all know but agree not to talk about.
According to Frank Ostaseski, internationally respected Buddhist teacher and visionary pioneer in end-of-life care, Death is also “the secret teacher hiding in plain sight, helping us to discover what matters most.”
In his 2017 book The Five Invitations, and on the book’s website, Ostaseski contends that life and death are a package deal. Without a reminder of death, we tend to take life for granted. The author shares the lessons he’s learned over the course of his career as a teacher, international speaker, compassionate caregiver and the cofounder of the Zen Hospice Project.
The five invitations are a set of mutually supportive principles for being with dying, but as the author explains “they can be seen as best practices for anyone navigating a life transition, coping with loss, a serious illness or personal crisis” and they are:
- Don’t Wait.
The problem with the word patience is that it implies we are waiting for something to get better. We are waiting for something good that will come. A better word would be constancy, a capacity to be with what is true moment after moment. Don’t wait until you are on your deathbed to love and forgive those whom you have wronged or who have wronged you.
- Welcome Everything, Push Nothing Away
Pain + Resistance = Suffering. “The word welcome confronts us; it asks us to temporarily suspend our usual rush to judgment and to simply be open to what is happening. When we are open and receptive, we have options. We are free to discover, to investigate, and to learn how to respond skillfully to anything we encounter.“
- Bring Your Whole Self to the Experience.
Having sat at the bedside of more than a thousand dying people, this author prefers the term “service” rather than “caregiving.” Helping, fixing and serving represent three different ways of looking at life. When you help you see life as weak, when you fix you see life as broken and when you serve you see life as a whole. Service is bringing your whole self to the experience. It is the work of the soul.
- Find a Place of Rest in the Middle of Things.
To have the courage of the warrior, the courage of a strong heart and the courage of vulnerability are goals to stretch for to better understand the life we have been given and the life we can live. Buddhism and mindfulness practice can assist with these goals.
- Cultivate Don’t Know Mind.
This is characterized by curiosity, surprise and wonder. It’s being receptive, ready to meet whatever shows up as it is.
More from Frank Ostaseski
There is more to learn from this author and teacher. In late 2019, Ostaseski experienced a major stroke followed by four more strokes. Scheduled to be a presenter at the 2019 End Well Symposium in San Francisco, his health issues kept a formal presentation from happening, but he did share some of his recent “discoveries” in this 15-minute conversation with Courtney Martin, called The Paradox Of Vulnerability. Through his recent experience as care-receiver, he has found that vulnerability – being in a position where you could be harmed – opens you to more love and acceptance.
This July 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 Libby Hopkins and Mary Kay Brady.