Virtual Warriors: Advocating in the Digital Age
By Jill VonOsten, NM Compassion & Choices State Organizer
With just over a month until the start of the 2021 Legislative session, you might be wondering just exactly how YOU can help to pass the Elizabeth Whitefield End-of-Life Options Act?
Advocacy – any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others – is the answer.
Advocates will tell you that the best way to influence policy is by creating a relationship with legislators and their staffs, and creating a relationship is best done via a face-to-face, or better yet, a series of face-to-face meetings. But what’s an advocate to do when in-person meetings are not an option?
In the time of COVID, advocacy, like most things, is changing. The truth is that advocacy methods have been changing even before this pandemic. Over the past few years, some of the tried-and-true methods of reaching lawmakers directly have been getting less attention as communications, news, and media sources have expanded online. COVID has just accelerated the use of these other sources, particularly digital and virtual media.
This isn’t all bad news. During the pandemic, elected representatives have had to rely on digital communications and virtual meetings for many of their regular business activities and constituent contacts. For instance, the New Mexico Legislature recently held interim committee meetings online and heard public comment virtually through video conferencing.
Nationally, lawmakers have reported that online activities have had some major benefits. Virtual meetings allow legislators to extend their reach by seeing more constituents in less time and rural residents are not penalized access to their representative because of the distance they must travel to the State Capitol. A chief of staff from a state Congressional office recently reported, “In-person meetings tend to take longer due to niceties and small talk; we’ve found virtual meetings are more direct and to the point.” A recent survey by the Public Affairs Council revealed that 83% of Congressional offices anticipate they will continue to engage advocates virtually, even after the pandemic is over, even if in-person meetings can begin to resume.
So how can we all become powerful advocates for expanding end-of-life options at a time when we are no longer able to gather in state capitols to raise our voices with a chorus of other advocates? We asked three champions of end-of-life options what advocates can do to elevate their voices and what they should expect in the 2021 New Mexico Legislature.
Val Lovelace, Death with Dignity National Center, Statewide Campaigns Director
Q: Based on your experiences in other states, what tips can you provide for advocates who would like to get involved in 2021?
The legislative session is going to look very different, because of the pandemic. That means, for the most part, that the ways we advocated in the past may not be possible for a while…the meeting in the hallway, the handshake, the coffee over breakfast, and other face-to-face get togethers. Testifying in person may not be possible. So, I think the first question to ask is, “How will the New Mexico Legislature operate and what are the expectations for constituents who want to engage in advocacy?”
- Finding that out and complying with state requirements is going to be key for an advocate to be taken seriously, in my estimation.
- Will the legislature accept testimony via email, and how does that work?
- Will lawmakers meet with you via Zoom? Is s/he going to be taking phone calls, or do they have a plan to meet safely in person? Prepare for meetings and lobby days in advance and practice with these helpful tips.
I think lawmakers are going to be even more buried in emails this session than usual, so I recommend stretching your comfort zone to follow an email with a phone call a few days later.
- Write a solid subject line and include the bill number first, like “What I think about [Bill Number ___ ]” or “Urgent Question about [Bill Number___ ].“ The subject line should make opening it
- Say what you want the lawmaker to do and say why.
- Keep it short, sweet, and to the point. Write only what you know about. Avoid attachments.
- Tell personal stories, personal stories, personal stories.
- A phone follow-up is more important than pounding a lawmaker or staffer with multiple emails. Bills don’t get passed because people send emails. They get passed because people share stories, build relationships, and make the issue relatable.
- Send your email for morning coffee (Saturday, 7:00am) or after the evening meal.
If you do meet with a supporting lawmaker by phone, Zoom, or safe-distancing, ask additional questions and take notes:
- Who else should I speak with?
- Who is opposing and what are they saying about that?
- Who is supporting and what are they saying?
- Why does this issue have meaning for you?
Finally, nothing says, “I’m paying attention” like a personal note or card. Does your lawmaker support your issue? Mail a short note with a thank you card for representing what is important to you. They will remember that when it’s time to vote.
- Always follow a call or a meeting with a thank you note. Every time.
- All committee members and lawmakers supporting your issue should receive a hand-written thank you after voting. Plan that activity in advance. Volunteers can split up the list and prepare the mailings over a nice Zoom lunch or tea — lawmakers often hear when folks are unhappy and not so often otherwise.
- And if your lawmakers don’t support your issue? Write emails and personal notes of disappointment. Keep it professional, respectful, and brief. “I heard you aren’t supporting [Bill number __ ]. I’ll phone you next week to hear more about why.” And then be sure to do the follow up.
Elizabeth Armijo, Compassion & Choices National Advocacy Director, Compassion & Choices Action Network
Q: Other than reaching out to their lawmakers directly, how can advocates support the effort from their homes?
Social media is powerful and advocates are definitely showing their support virtually over the past year. Shortly after COVID 19, Compassion & Choices hosted a series of webinars to engage their supporters. The How to Become a Powerful Virtual Advocate webinar series included a social media 101 training.
The training showed how to use certain social media tools (Facebook, Twitter, Instagram) to engage, educate and influence stakeholders and decision makers to enact change. Social media users learned to share/retweet post in order to grow their audience and create an echo chamber of support for the issue. Some supporters have even participated in creating small videos to post and others have “followed” their lawmakers’ social media pages to engage on issues or to participate in town halls.
In addition to social media, advocates can continue to write letters, send emails, make phone calls, and set-up zoom meetings with their lawmakers.
Rep. Debbie Armstrong (D), HD #17, Albuquerque, Sponsor of the Elizabeth Whitefield End-of-Life Options Act
Q: What should advocates expect in the upcoming 2021 session? Will there be public input and how can advocates get their voices heard?
Due to the current COVID-19 Pandemic, the 2021 legislative session will be much different. The Roundhouse will not be open to the public; and most legislators will likely be working remotely. Once the House and Senate are sworn in, each chamber will pass rules on exactly how they will operate but you should expect that the entire session will be conducted virtually on Zoom. The public will still be able to go to the website at https://www.nmlegis.gov and view webcasting of meetings or find the Zoom link if you wish to provide public testimony in committee meetings. You can also find the daily floor calendar, committee meeting schedule and agendas, as well as view and track all legislation. You should explore the website ahead of the session so you are comfortable navigating and finding what you need.
All committee meetings will have a mechanism for public input. With meetings conducted on Zoom, it will be possible to let individuals into the meeting to provide testimony during the time that the committee is open for public comment. So, public comment will be handled largely as it is if you are there in person. If you are providing testimony, you should prepare to speak for no more than 1-2 minutes. Different committees operate differently and may or may not put a time limit on individual public comments, depending upon how many people wish to speak.
You will also be able to communicate with individual legislators by email or by calling their office. The office number and email address for each legislator can be found by looking up the legislator on the website. There will be staff available on-site to answer the phones. In addition, I anticipate that each legislator will be set up to conduct virtual office hours so that you can schedule a face-to-face Zoom meeting with a legislator.
As legislators, we are still counting on advocates and the public to engage with us, provide testimony and help us understand your perspective on the legislation we are considering. In regard to the Elizabeth Whitefield End-of-Life Options Act, I am counting on you to provide public testimony and to reach out to individual legislators to tell your stories. You make a difference and your continued participation, even during these difficult times, is important and appreciated.
The Art of Advocacy…The Elevator Speech
Sometimes there are only a few precious minutes to explain what your bill is about and why it’s important. Trying to talk with a busy legislator at the state capitol is sometimes called the “elevator speech” and luckily our Roundhouse elevators are incredibly slow. On December 3rd at the NM Public Health Association’s 17th Annual Health Policy Forum, Barak had the opportunity to present the Elizabeth Whitefield End-of-Life Options Act to a zoom audience of about 250+ people, along with 30 other advocates presenting their legislative proposals for the 2021 session. Each presenter had a maximum of two minutes to tell their story. Here is how aid in dying advocate, Barak Wolff, described our effort to authorize medical aid in dying (reverting to his NY roots and speaking very rapidly):
The Elizabeth Whitfield End-of-Life Options Act authorizes medical aid in dying in NM. It is a sound policy that expands options and extends compassion at the end of life by honoring our right to self-determination and choice, for those who wish. It is named for a heroic and dedicated advocate who was fighting for her life during our first attempt in 2017. She was seriously ill as she provided moving testimony amidst her oxygen tank and feeding tube. Elizabeth Whitefield, a well-known Children’s Court Judge, did not make it to our 2019 effort. She suffered through a tough death.
Medical aid in dying enables a terminally ill person with a prognosis of 6 months or less to receive a prescription from a willing provider that they can self-administer, if and when they choose, in order to end their suffering and have a peaceful death. Starting in Oregon in 1997, medical aid in dying is now authorized in 10 jurisdictions covering more than 20% of the US population.
The data from 40+ years of cumulative experience shows that it is a safe and effective policy that not only benefits the very few who utilize it, but improves the entire end of life care system with increased advance care planning, earlier palliative care and earlier hospice. Medical aid in dying offers peace of mind and a measure of control at the end of life that allows many people to live fully through serious illness knowing that they will not need to suffer if it becomes unbearable.
The bill has numerous proven protections for all parties and is entirely voluntary for patients and providers. Our NM version addresses the access challenges experienced in other states by reducing the waiting period, recognizing Nurse Practitioners and PAs as providers, and minimizing paperwork for all involved.
APHA and NMPHA have been active supporters for many years. With a solid House, a newly progressive Senate, the enthusiastic support of Governor Grisham and our excellent champions, Rep. Debbie Armstrong and Sen. Liz Stefanics, we are hopeful that our 2021 effort will be successful. We greatly appreciate the continued support of NMPHA.
Beyond Legislation: Access to the Law is Key
By Phyllis Bergman, NM EOLO Coalition Steering Committee member
Phyllis Bergman, a New Mexico nurse practitioner, reflects on her sister’s experience attempting to access California’s End of Life Option Act. Phyllis believes the law needs to be more accessible and is advocating for an improved aid-in-dying legislation right here in her home state of New Mexico.
During my 30 years as a nurse practitioner, I have held many positions in healthcare, the most significant of which was with an Albuquerque hospice. My job was to see patients every two to three months to see if they continued to qualify for the care they received. The work was difficult. What struck me most was that many of these terminally ill patients wanted to end their suffering in a way they could control and with a level of dignity that was not available to them. They repeatedly would ask the staff: “Can you please help me die?” It was heartbreaking.
Then, I faced the same situation with my younger sister, Vicki, who was dying from pancreatic cancer. In her last months, she asked for help in attaining a peaceful death.
Vicki was diagnosed with pancreatic cancer in early 2017 while she was still living in Washington. She desperately wanted to live. Her husband, two daughters, and son desperately wanted her to live. I desperately wanted her to live. But pancreatic cancer is an aggressive cancer with an extremely low survival rate. Vicki endured high dosage chemotherapy by infusion with painful and debilitating side effects, but it eventually became clear that it was not working. Her cancer continued growing and spreading.
It was evident to Vicki and everyone else that she was dying. As a result, she and her husband moved to California to be amongst family – two of her children lived there and I could easily visit from New Mexico. She had two grandchildren on the way and hoped to live long enough to see their births. Being in California meant she would be surrounded by love through her last months and that she would still retain the same end-of-life options as she had in Washington – the option of medical aid in dying. Or so we thought.
Vicki had a physician who refused to honor her request for aid in dying and did not help us find a provider who might honor her request. I promised Vicki that I would help her with this last wish. Lacking guidance, I took on the task of researching and locating a hospital that would allow for this compassionate option. After a series of unanswered calls to several facilities, I connected with a university hospital’s end-of-life program and asked if I could schedule a telehealth visit for Vicki to request medical aid in dying, but was instructed that we would have to physically show up for the appointment.
Vicki’s disease had already progressed significantly, she was suffering from painful and disabling symptoms, she was on hospice and she was frail at just 85 pounds. I drove her to the appointment, but finding an appropriate and close parking spot was nearly impossible. I parked illegally in a loading area, prayed that my car would still be there upon our return, and pushed Vicki’s wheelchair up a steep slope toward the medical buildings. Somehow, we managed to locate the office.
We were escorted to the exam room where a young physician greeted us in a voice that did not acknowledge the gravity of the visit. We both felt a lack of empathy and respect for our situation. The physician confirmed that this appointment would be filed as the first request but that we would need to return in 15 days, per the law’s requirement. I once again pressed for a telehealth visit, but the idea was rejected. The doctor stated we must come in person.
We scheduled the second appointment, headed back to the car, and we both felt a sense of defeat. It took Vicki a day to regain her energy from the exhausting trip and she soon realized she didn’t want to go through it all again. She was so disheartened by the experience. She didn’t feel that they had met her where she needed to be met. We were both disappointed in how it was all handled – how they made us come to the office in person, how they treated her when we got there or how there was no follow-up call after we missed the second appointment. We got completely dropped. It took the wind out of our sails.
The barriers to access California’s law were so onerous, we gave up. My sister experienced another several weeks of suffering that she didn’t need to endure. There was no need for Vicki’s suffering to be prolonged, but the accessibility just wasn’t there.
There should have been a fast track for my sister to get through the process. Even getting to the first appointment was a monumental task for a dying person. Someone with stage 4 pancreatic cancer deserves a fast track. It’s a disease that is not going to get better or more tolerable. People with advanced cancer, end-stage ALS and others could benefit from a fast track. It would be simple enough for medical professionals to create criteria to indicate who would benefit from an expedited process that honors their wishes. Hers was such an obvious case. She was dying. In an ideal universe, she would have been fast tracked. Not only was she not fast tracked, she wasn’t even really helped.
It was only in Vicki’s death that she finally found peace on November 28, 2017. She suffered excruciatingly through her last weeks. I miss her every day. She was full of life and such a good person.
As I advocate for medical aid in dying in my home state of New Mexico, I ask that lawmakers pay attention to the issue of accessibility. Dying people need, not only this compassionate option afforded to them, but a compassionate process to ease their journey. I am in favor of a shorter waiting period, as included in the Elizabeth Whitefield End-of-Life Options Act and the use of telemedicine to allow for easier access, especially in a state as rural as ours.
National News: The Compassionate Cares Act
As our country faces unprecedented death, the COVID 19 pandemic has underscored the increasing concerns many Americans feel about end-of-life issues. To address this heightened awareness, Senator Richard Blumenthal (D – Conn) has drafted a bill for Congress and will be called the Compassionate Cares Act. The Act reflects the growing understanding that patients should have a say in the medical interventions they receive in their last days and offers resources to help them make their wishes known.
“This bill will help Americans have the difficult but necessary conversations about end-of-life care,” said Sen. Blumenthal. “The COVID-19 pandemic has reminded Americans of all ages of the importance to have a plan in place in case of severe illness or death. By promoting end-of-life care through public awareness, expanding telehealth services, and working with physicians, we can ensure that not one more person is robbed of making critical life or death decisions for themselves during this pandemic and beyond.”
If enacted the bill would significantly expand federal resources to support advance care planning and end-of-life care decision making. Specifically, the Compassionate Care Act would strengthen three important facets of end-of-life care:
- Consumer Education: Develops and implements a National Public Education Campaign to raise awareness of palliative and hospice care and encourages individuals to speak with qualified health care professionals about their options and intentions for end-of-life care.
- Provider Education:
- Establishes a pilot program in advance care curriculathat will allow qualified health care providers to further develop their skills on how to discuss and help patients and their loved ones with advance care planning.
- Supports the expansion and development of continuing education programs on advance care planning and end-of-life care.
- Supports the development of core end-of-life quality measures across each relevant qualified health care provider setting.
- Studies and Innovation:
- Establishes a demonstration project to reimburse eligible entities for costs associated with the use of telemedicine services to provide advance care planning;
- Directs the U.S. Dept. of Health and Human Services Secretary to conduct a study on the establishment and implementation of a national uniform policy on advance directives;
- Improves access to advance care planning by expanding telehealth options for providers and patients; and,
- Supports a U.S. Government Accountability Office (GAO) study and report on establishment of national advance directive registry that would allow patients to transfer their advanced directives from state to state.
Educational Opportunities: Recorded Presentations Available on Video
If you missed the 4th annual Before I Die New Mexico Festival last month, you can now view recordings of some of the featured end-of-life presentations on YouTube.
Prospects for Medical Aid in Dying in New Mexico
On November 1st, members of the NM End-of-Life Options Coalition moderated a panel discussion entitled, Prospects for Medical Aid in Dying in New Mexico. The discussion features four of the Coalition’s founding members including our bill champion Rep. Debbie Armstrong, our legal advisor UNM Professor Emeritus Rob Schwartz, public health advocate and legislative analyst Barak Wolff, and Compassion & Choices’ National Advocacy Director Elizabeth Armijo.
The presentation includes a definition of medical aid in dying and an overview of the provisions in the bill that will be introduced in the 2021 Legislature. The video also includes background information on medical aid in dying advocacy and education efforts in the state, summarizes support and polling information, and highlights prospects for passage of the bill in the upcoming legislative session. To view this presentation, click here.
A Good Goodbye: Funeral Planning for Those Who Don’t Plan to Die
This televised interview series is about everything one needs to know about funeral planning before there’s a death in the family. Beginning in January 2021, Comcast Cable Access Channel 27 will air the TV series, A Good Goodbye: Funeral Planning for Those Who Don’t Plan to Die. The program covers 14 weekly episodes with guest experts providing knowledge and opinions related to the subject of that episode. Compassion & Choices, one of the Coalition’s national sponsors, sponsored the filming of the series back in 2013. The program is set to begin the first week of January on Tuesdays at 8:00 p.m. and repeated on Saturdays at 2:00 p.m.
Why You Need an Advance Healthcare Directive
This presentation is delivered by Coalition member and volunteer Albuquerque Action Team leader, Jan Wilson. In this clear and instructional video, Jan shares why an Advance Healthcare Directive is important, how to choose your health proxy, what to include in the directive, and how to have that vital conversation with your loved ones. Click here to watch.
Q: If the Elizabeth Whitefield End-of-Life Options Act is passed, what role will hospice agencies play in implementing this new end-of-life option?
A: The simple answer is that it will vary from hospice to hospice so it will be critically important for individuals who think that medical aid in dying may be an option for them to ask up front, before they select a hospice agency…if they are fortunate enough to have a choice in their area. Here is a link to a terrific story about hospice and medical aid in dying from our July, 2020 Update, authored by NMEOLO Coalition Steering Committee member and hospice nurse/administrator, Libby Hopkins.
Libby explains that at the beginning of implementing a new law, that some hospice agencies are often reluctant to participate, are not adequately trained, may have concerns about negative effects on their missions, etc. She reports that with experience and familiarity, support and participation by hospice agencies often increases as medical aid in dying is successfully implemented over time. The NMEOLO Coalition has a hard-working Implementation subcommittee that is already reaching out to hospice agencies to share information about the Elizabeth Whitefield End of Life Options Act and discuss future needs for assistance.
We do know that the data from Oregon and other states in which medical aid in dying is authorized shows more than 90% of those who choose medical aid in dying are enrolled in hospice. However, since most hospice is provided in homes and congregate living situations, that does not necessarily mean that their hospice will assist them. This really needs to be checked in advance to find out if and in what ways a given hospice agency will support those who wish to hasten their death.
In some cases, a hospice agency will be clear that, as a matter of conscience and/or policy, they will not support medical aid in dying in any fashion and further, they may restrict their employees (health care providers, support staff, or volunteers) from participating in any fashion. Other agencies may take a more moderate approach and allow some of their staff to be involved in various ways, but restrict their health professional staff from being the prescribing or consulting provider that leads to the prescription. And there are other hospice agencies that are fully supportive and allow their staff to provide whatever roles their staff and clients decide is right for them. In most cases, hospice will not pay for the life ending medications.
The bottom line is that policies and attitudes of hospice agencies regarding hastening death via medical aid in dying, VSED (voluntary stopping eating and drinking) or any other means, should be explored before a deciding upon which hospice to enroll in.
Countdown to the 2021 NM Legislature
One month. Yes, it’s true. There is just a little over one month until the New Mexico State Legislature is scheduled to begin and our Elizabeth Whitefield End-of-Life Options Act will be introduced for consideration. We hope that you will take the next month to reflect on your own end-of-life planning, finalize or revise your advance directive, and speak to the people in your life who will help you to fulfill your wishes at end of life.
Take Action: While we aren’t able to gather in-person, we hope you’re able to safely share the holiday season with your loved ones. If you’re thinking about starting to plan or revise your end-of-life care decisions while you have some free time over the holidays, our Advance Planning Guide and Toolkit can help: https://compassionandchoices.org/resource/my-end-of-life-decisions-an-advance-planning-guide-and-toolkit/
The holiday season provides opportunity to spend time with a good book, or two, or three. And books always make for great gifts for others. So, this month we feature two books that you can add to your library, enhance someone else’s or both!
Title #1: Modern Death
Author: Haider Warraich
Review by: Mary Kay Brady, Las Cruces Action Team
There is no more universal truth in life than death. We have a 100% mortality rate. One day each and every one of us will die. Haider Warraich, in his book Modern Death: How Medicine Changed the End of Life, explores the broader look at how we die today versus in the past. In discussing the modern death, Warraich takes a look at the history of death. He notes many changes that have happened in the last century in both the rituals and language of death.
Benjamin Franklin and Thomas Bond laid the foundation for what we now experience as modern death when, they opened the first American hospital in Philadelphia in 1751. More than half a century later, looking at causes of death in 1812 Boston, Warraich found less than 3% died of “old age, and ½ to 1% died of cancer. The average life expectancy was, a shocking 28 years for males and 25 years for females. Today, with an average life expectancy of 78 years for males and 81 years for females, we are now living long enough to acquire a wide range of chronic diseases like cancer, heart disease, diabetes, dementia, etc.
Modern medicine has changed the way we die. To be sure, medical advances through the years have allowed us to live longer and better in many cases. However, even with advances in medical care, investments in medical equipment, and an extended life expectancy, it seems that dying in one’s own bed has now become a privilege. Today, even though most people indicate when asked that they would prefer to die at home surrounded by loved ones, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.
Some argue that our understanding of modern death really began with the case of Karen Ann Quinlan. She became comatose and brain dead in 1975 and her parents had to the fight to remove her from life support all the way to the New Jersey Supreme Court. Even after the ventilator was removed the feeding tube was maintained and she ultimately did not die until 1985. This case, marked the birth of the right to die movement. Shortly after the Quinlan case, a patient bill of rights was created and published in The New England Journal of Medicine establishing the right of a patient to decline treatment, and setting the stage for subsequent and expanding end-of-life options like medical aid in dying. Ultimately most states have adopted laws, like the NM Uniform Health Care Decisions Act, which legalize our right to self-determination.
Advance care planning is critical in Warraich’s mind and he finds that being a healthcare proxy is the hardest thing one can be nominated to be. With antibiotics, surgery, vaccines, mechanical ventilators, and CPR, it is possible to extend patients’ lives beyond the persistence of their own ability to live. In order to provide autonomy to patients, the author reminds us that proxies have only two roles – 1) follow the wishes of the patient and 2) think about what would be in the best interest of the patient.
Aid in dying or death with dignity has brought forth the issue of comfort measures only. Warraich cites the case of the young Californian Brittany Maynard to illustrate when life sustaining becomes death prolonging. Brittany and her husband eventually moved to Oregon to access medical aid in dying. This author has come to the conclusion that we must support competent terminally ill patients’ right to demand and acquire the means to end their suffering with the aid of medication.
In the meantime, support for the dying starts, at the kitchen table or on a Zoom call, with that crucial conversation about end-of-life options.
Title #2: The Boy, the Mole, the Fox and the Horse
Author: Charlie Mackesy
Review by: MaryKay Brady NMEOLO Coalition
“What do you want to be when you grow up?” asks the mole.
“Kind.” says the boy.
And this starts a beautifully simple book with some very heavy duty prose for our Covid-19 world. Read it alone, read it aloud with a friend. Buy copies for holiday gifts. You will laugh and cry but you will be impressed by the simple conversations and beautiful illustrations of the author.