April 2020

National Healthcare Decisions Day

National Healthcare Decisions Day (NHDD) is on April 16th. This day was created in 2008 to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD encourages everyone to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be, as closely as possible. While many NHDD-related events will be cancelled due to coronavirus, advance care planning remains as important as ever. Here are some virtual events you might want to check out and encourage others to “attend.”

Just in time for National Healthcare Decisions Day and our new social distancing reality, Compassion and Choices is launching the first of its’ new national webinar series, Staying Stronger Together.  Here’s a look at the first of these webinars:

  • Monday, April 13 at 12:00 MDT – Compassion & Choices (C&C) will launch National Healthcare Decisions month with a virtual Town Hall discussion titled, “Navigating End-of-Life Care and Choice During the Pandemic.” Register for this event, here.
  • Tuesday, April 14 from 10:00 – 11:30 a.m. MDT a webinar entitled: “How to Become a Powerful Virtual Advocate” will be presented by C&C. No matter how familiar you are with Facebook, Twitter, and other online tools, attendees will learn new skills for making their voices heard in the digital sphere. Register for this event, here.
  • Thursday, April 16 at 12:00 – 1:00 p.m. MDT – C&C will present “National Healthcare Decisions Day: End-of-Life Decisions Guide and Toolkit.” Participants will learn more about potential medical interventions at the end of life, learn new terminology and be given tools for planning. Register here.
  • Tuesday, April 21 at 12:00 –1:00 p.m. MDT – The webinar, “Living and Dying with Dementia: Taking Charge of Your Personal Values” will be hosted by the American Society on Aging. This webinar offers 1 Continuing Education (CE) credit. Register for this event, here.

For alerts and more on C&C’s NHDD activities, follow C&C’s Facebook page,

In addition to these events, there are a number of national organizations that promote advance care planning. Check out their Facebook pages or websites for resources to help “start the conversation” and any upcoming activities they may have to celebrate National Healthcare Decisions Day:

 

Thoughts on Death and Dying in the Time of COVID 19

By Barak Wolff, NM EOLO Coalition Steering Committee

Where to begin…? Like many of you, wife Leah and I are homebound on our ridge top in Tesuque, safe, well fed and basically healthy for now…as far as we know. We count our many blessings as we are trying to be compliant with all the new guidelines, following recommended precautions, and only going outdoors for exercise, fresh air, and as a last resort to obtain necessities. At the same time, we are deeply appreciative of the many folks who selflessly accomplish their essential daily jobs serving the rest of us with care and grace.  Now that we are 2-3 weeks into this new world of social distancing, we try to use our time “well” for connecting with family and friends, exercise, daily chores and living as joyfully as possible. However, we must balance all of that with the 24/7 onslaught of information, data, warnings, recommendations, and compelling stories and images. With the strong likelihood of things getting much worse and extending for weeks, and probably months, before any return to “normalcy”, we soldier on as this is the world we live in for now…a time of great uncertainty for all of us.

For those of us who have been actively engaged with death and dying in recent years, perhaps our current reality offers an unprecedented opportunity to move the conversation forward, to enhance our own thinking and that of our families, neighbors, health care providers, and even policy makers. Our issues are now part of the daily news coverage. We are inundated with the daily infection rates and death counts from this coronavirus, with grim pictures of bodies stacking up in hallways, refrigerated cargo trucks and even churches. Each day we bear witness to the pleading testimonials from fearful, mentally and physically exhausted healthcare workers and first responders that reveal their humanity, heroism and self-sacrifice.

And most heartbreaking of all are the vivid stories of absolute despair as some families don’t even have a chance for final goodbyes with loved ones who die alone, often sedated, and struggling for breath on ventilators with medications that just can’t keep up with this virulent virus. Hospital administrators, clinicians, and bio-ethicists are forced to speculate about inevitable shortages and the need to revisit or develop policies and guidance about how critical life and death decisions will be made…who is afforded the opportunity to receive treatment and possibly survive and who receives comfort care as they rapidly succumb to the virus? All of this chaos both highlights and challenges our mission of living fully and having a good death of our choosing.

Now is the Time to Plan
So…what can we do as individuals and as advocates for a full range of end of life options being available and accessible to all. As noted elsewhere in this Monthly Update, April 16th is National Healthcare Decisions Day (NHDD), the annual designation created to inspire, educate and empower the public and healthcare providers about the importance of advance care planning. Given our current coronavirus pandemic, these issues of healthcare decision-making have never been more front and center.

Underlying healthcare decisions, is the basic and fundamental right to “self-determination” as guaranteed to all New Mexicans through the Uniform Health Care Decisions Act (UHCDA) enacted in 1995. The UHCDA empowers each of us to decide what medical care we want to have, from whom, where, when to start care, and when to stop treatment in favor of comfort care. We can express these choices/desires through an advance directive and by appointing a health care agent or decision-maker to represent us if we lose capacity to speak for ourselves.

Particularly in these trying times of COVID 19 when hospitals may be full, access to health care a challenge, and this serious, life-threatening illness can overtake us at any time, it is more important than ever that each of us is clear about our wishes and our directives for advanced treatment and end of life care. Health care resources are stretched and providers are at personal risk, so each life and death decision is critical. Advance care planning gives clear guidance to health care providers about our choices for treatment and/or if and when we might opt for comfort care.

Decision-Making During the Pandemic
So, while we have this pause in our busy lives, perhaps this is the perfect time to accomplish and/or revisit our advance directives to ensure that they still reflect our values/priorities and our innermost and honest feelings about what end of life options we might choose. And perhaps this is a good time for us seniors to go a step further and download a copy of the NM Medical Order for Scope of Treatment (MOST) (https://www.nmmost.org) and consider completing it, even if for the moment we are healthy and have no major underlying illnesses or risk factors. We know that those of us over 60 are at high risk of a serious infection from COVID 19 that can quickly become deadly. Unlike an advance directive, the MOST is a medical order and is intended to be discussed with one’s provider and signed by both parties. But even unsigned for now, a completed MOST can be an addendum to our existing advance directive that gives additional clarity about our choices.

In addition, for frail elders and those with underlying conditions, symptoms, or a possible exposure, the Colorado Center for Patient Centered Decisions at the University of CO School of Medicine has developed a one pager entitled, “Life Support During the COVID Pandemic” which is worth checking out (https://patientdecisionaid.org/wp-content/uploads/2020/04/3-19-2020-COVID19-life-support-machine-V10.pdf). It is simple, clearly written and provides a set of choices that may help clarify one’s own values about respiratory life support options and thus be helpful to medical providers…particularly if ventilator rationing becomes a reality.

Another excellent website with a variety of helpful tools to assist  both individuals and healthcare providers explore end of life decision-making during this pandemic can be found at Respecting Choices: https://respectingchoices.org/covid-19-resources/#planning-conversations. The Conversation Project has also developed a new resource specifically for COVID 19 decision-making at: https://theconversationproject.org/wp-content/uploads/2020/04/tcpcovid19guide.pdf

These thoughtful resources remind us that for some, the choice to opt for comfort care rather than treatment can provide peace of mind, the opportunity to say our goodbyes, and a calm, even peaceful, death.  It is our right to self determination…it is our choice to make.

And finally, in spite of all the uncertainties as to how and when we will return to “normal”,  this is a good moment to reflect about how all of this might impact end of life options in our country and our efforts to enhance access to medical aid in dying for those who choose it. Perhaps this real time global pandemic experience actually furthers our cause. It highlights both the preciousness and fragility of life and the inevitability of death. It encourages all of us to explore our values, share them with our loved ones and live our lives to the fullest…until our bodies fail and we decide our time has come. And then we should have the opportunity for that death to be as we choose, whether fighting for one more breath or choosing a more peaceful path. The majority of folks want the right to make that choice and we’ll continue to make progress in that direction.

 

The CARES Act, Telehealth and the Terminally Ill

In the early days of the pandemic, seriously ill and terminally ill supporters of end of life options began expressing deep-seated concerns: concerns that they were more vulnerable to contracting the coronavirus and dying prematurely, concerns that the idea of a “compassionate, pain-free death” was no longer possible given healthcare shortages, and concerns that they might die alone, suffering, without access to hospice and palliative care to ease their pain.

Within just a few weeks, Compassion & Choices along with some 28 other healthcare advocacy groups, delivered letters to congressional leadership asking that specific provisions be added to the Coronavirus Aid, Relief, and Economic Security (CARES) Act. Five of their requests were included in the final bill that was signed into law on March 27, 2020. The CARES Act provisions will help patients get care if they are unable to go to clinics or hospitals. These provisions include allowing use of telehealth to recertify eligibility for hospice care, expanding access to telehealth, and increasing access for patients receiving services in federally qualified health centers and rural health centers. Read more about the provisions and the benefits of this legislation here.

Since the law has passed, advocates are communicating telehealth recommendations to Governors, lawmakers and key decision makers nationally to assure people get the care they need through executive action by Governors. As time passes, we begin to learn more about the virus, how to treat and prevent it and the impact the crisis is having on our healthcare system. Healthcare advocates continue to look for gaps in existing federal and state laws surrounding advance directives and end of life care and will be making additional recommendations for policy improvements and funding requirements, as they are determined.

 

Outreach

Most of the community activities we had planned for the month of April have been cancelled due to the coronavirus. There were conferences, trainings, workshops, observances, community talks, book clubs, and many more events planned for the month. Conducting outreach and hosting educational events can be difficult when you can’t leave your house or congregate. But not impossible.

The challenges posed by social distancing are prompting us to find new ways to stay connected in communities and find new venues to accelerate and continue the conversation of expanding end of life options. Here are just a few of the ways we hope to stay connected with you in the months ahead.

  • Facebook: Just last month, the Coalition launched its first social media account on Facebook. If you have not “followed” or “liked” our page yet, please do so at this link. Look for stories, educational videos, upcoming events, state legislative news, shared posts from our national partners, and much more in the coming months.
  • Website: Thanks to a recent grant from the Death with Dignity National Center, our Coalition website is being enhanced and regularly maintained. Visit endoflifeoptionsnm.org for the latest on Coalition news.
  • Email: We plan to utilize our email mailing list to share relevant and timely news on the national, state and local levels. Email offers one of the fastest ways for us to connect and stay up-to-date, whether it be on COVID-19 developments related to end-of-life topics or candidate forums and primary election news.
  • Teleconferencing: This mode of communication has jumped into the forefront this month with meetings, trainings and gatherings of all sizes being held throughout the state. The Coalition steering committee will be meeting virtually on April 23rd and our Action Team in Albuquerque plans to have its May 1st meeting using this technology.
  • Jan Wilson, ABQ Action Team

    Online Training: This month, Albuquerque Action Team Leader Jan Wilson and co-trainers Joan Gibson, Libby Hopkins and Jane Westbrook will move their 3-part training series to a Zoom conferencing platform. The annual workshop, offered through UNM’s Osher Lifelong Learning Institute (OLLI), is usually held in a classroom setting on UNM’s Continuing Education campus, but now will be held virtually. Entitled: Don’t Make Me Talk About THAT – Discussions about End of Life Topics, the training will begin on April 16th from 10:00 a.m. – 12:00 p.m. and continue once a week until April 30th, 2020. For more information, visit unm.edu/Osher and search for class #19073.

 

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 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.

We hope you’re staying safe, healthy, and engaged. National Healthcare Decisions Day (NHDD) is Thursday, April 16. With the ongoing coronavirus pandemic, the importance of understanding, planning and advocating for one’s care preferences at life’s end is of paramount importance.
On Monday, April 13, we will launch a week of virtual events for National Healthcare Decisions Day with a virtual town hall discussion titled, “End of Life Care and Planning During the Pandemic.” During the town hall we will address the stark realities of planning for the end during this difficult time. Stay tuned to our Facebook page for details on this and all our upcoming virtual events, and RSVP for the April 13 kickoff town hall here: https://secure.everyaction.com/Zh4wspbS70ydvk8-WrVAsQ2

 

Election News

Like many of us, you might be thinking about what impact the social distancing measures will have on the 2020 elections. Afterall, the primary election is less than two months away and candidates are eager to get before their constituents to earn their votes. While the election dates have been scheduled, our response to the coronavirus must remain fluid and that presents plenty of uncertainties. Stay on top of evolving election news by following the NM Secretary of State on her Facebook site and main website.

Candidates
One thing is for sure, the candidate filing deadline to appear on the general ballot was March 10, 2020. By mid-March, the New Mexico Secretary of State, Maggie Toulouse Oliver, had published a comprehensive list of candidates for public office. The list can be sorted by county, office, and party and includes the name, district and contact information of the candidates. If you are looking for your State Representative or State Senatorial candidates but you are not sure which district you live in, you can use the search engine on the NM Legislature website and simply enter your address to find your district.

With the restrictions on public gatherings, some candidates have turned to the internet to keep in contact with the electorate. Some are taking questions on their Facebook pages, others are holding virtual town halls, videoconferencing and Facebook Live events in order to be accessible and keep their campaign momentum growing. This is an excellent time to find out who is running to represent you and what their stance is on medical aid in dying.  If you are able to learn a candidates’ views on MAID, please relay that information by email to Jill at jvonosten@compassionandchoices.org. We are closely following the positions of all candidates – those in favor, against or not sure – in preparing for our legislative campaign in 2021.

Primary Election and Absentee Ballots
New Mexico’s Primary Election is scheduled for June 2, 2020. Any and all New Mexican voters can avoid the lines and social interactions at the polls by requesting an absentee ballot. Plan now and vote by absentee ballot. Here’s all you need to know:

When? May 5, 2020 is when mailed ballots will be sent to those eligible New Mexico voters who requested them. A mailed ballot must be requested no later than May 28, 2020.

Who? Any eligible New Mexican voter can request an absentee ballot. We have what’s known as a “no-fault” absentee ballot process here in New Mexico which just means that any eligible voter can securely request an absentee ballot.

How? There are two ways to request an absentee ballot. (1) Fill out an absentee ballot request through our online portal here. (2) 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.  NOTE: A mailed ballot must be requested no later than May 28, 2020.

Vote by absentee ballot.
Stay Home, Stay Safe, and Help Flatten the Curve in New Mexico!

 

Register to Vote NOW
If you have not yet registered to vote in New Mexico. You can do so online and you can also update your voter registration online. Register to vote here.

 

Book Review

Book Review: When My Time Comes: Conversations About Whether Those Who Are Dying Should Have The Right To Determine When Life Should End
Author: Diane Rehm
Book Review by: Mary Kay Brady, Action Team Leader, Las Cruces

From 1984 until she retired in 2016, Diane Rehm served as the public radio talk show host of The Diane Rehm Show. She enjoyed a long career in radio, but it was her own personal experience of the death of her husband in 2014 that turned Rehm into what the Washington Post called “a leading voice in the right to die debate.” John Rehm died after he stopped eating and drinking to end his suffering from Parkinson’s disease. After his death, Rehm argued that no one should suffer needlessly in the way that her husband did.

Many of us have read her other published works or listened to her on NPR, but this is by far the most far reaching read to date.  Rehm has managed to create a book filled with candor and compassion for the conversation about end of life planning and the right to die movement. The book is a precursor to a film of the same name that will be released on public television in early 2021.

Medical aid in dying (MAID) is for people who want to live but don’t have the choice to live due to life ending or life limiting issues. Rehm presents the viewpoints both for and against in an easy to read non-judgmental fashion. Deftly the air is cleared of any misconceptions or misrepresentations of this subject.

While preparing advance directives that apply when a person is terminally ill or permanently unconscious is encouraged, it is also true that these documents are often not available or ignored. This is evidenced by statistics like 30-40% of people have ICU admissions in the last 30 days of life and 9 out of 10 people with dementia have some sort of invasive procedure in the last month of life.

Rehm acknowledges the important role that palliative care and hospice play in managing some patients’ pain and symptoms at the end of life. While both are reasonably available, in most areas, more is needed to ensure that we can feel in control of our living and dying and maintain our individuality and dignity. Drawing out the dying process with endless medical procedures and clinical trials is not in the best interest for many of us.

Nine states and the District of Columbia have approved some form of medical aid in dying patterned after the very successful laws in Oregon. 1 in 5 Americans now live in a state where MAID is legal.

As more states legalize medical aid in dying, Rehm points out that the next challenge will be to educate the clinicians about the importance of talking to patients about end of life choices. My take: healthcare professionals must be able to embrace this conversation in more than the $86, thirty-minute time frame currently paid for Medicare recipients. More conversation and open dialog among the general public and between medical professionals and patients will further the work started by so many organizations and groups.

Note:  Alert! John Grisham fans – he has written an excellent forward to Diane Rehm’s wonderful book.

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This April 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.

Questions & Comment