May 15, 2021
This Issue's Contents

Sign the Petition!
A Snowbird Experiences the Contrast in Two States
Arizona Update

News Around the US: California Amendment SB380
Volunteer Corner

Upcoming Events
Donate to Arizona End-of-Life Options


Help establish a compassionate end-of-life option for the terminally ill in Arizona

As of today, we have 709 e-petition signatures from advocates in Arizona. If you haven't already, please add your name to the growing list of supporters in favor of legalizing Medical Aid in Dying in our state. If you have signed, thank you. Please share with your friends and family members so we can make a real impact when we share this petition to the Arizona legislature before next year's bill.
Click here to Sign our Petition!
A Snow Bird Experiences the Contrast in two States
by Dwight Moore, PhD
Chair, Arizona End-of-Life Options
With the arrival of spring, my annual trek from Arizona to Washington occurred without a hitch.  I was able to continue my job as Arizona End of Life Options Chair while on the road since these days the job is done remotely.  The distance between us doesn’t seem to matter anymore; whether I’m in Phoenix or Seattle, I’m still communicating by phone or laptop. So many are operating this way now, it’s become commonplace.

Returning to Washington triggered a resumption in my End-of-Life Washington volunteer activities and my team there welcomed me back with the news that they had a burgeoning caseload. They described some of the situations they were working on, and this is when I sensed first-hand the dramatic contrast between the two states. You see, in Washington, where MAID is legal, my job focuses on helping people access the law. In Arizona, in addition to chairing our organization’s efforts, I also counsel clients on end-of-life choices in this state where MAID is not yet law. 

During my trips north, I routinely drive 6-8 hours each day, stopping at a hotel for the night. There I read my emails, make necessary calls, and one night even participated in a webinar. On the second evening of my trip, I opened my laptop to find two email requests for women managing their end-of-life issues. Charlotte, an Arizona resident was asking me to call her about her concerns and my End-of-Life Washington team had sent me a referral for Jill who needed assistance accessing MAID. I made both calls that evening and that’s when I was struck by the dramatic difference brought about by the laws in these two states. 

On one hand, for Jill in Washington, the mood was appropriately sad. A vibrant woman, who had danced and loved, was now dying of ALS. Her voice was full of emotion as she told me of an unrequited love, expressed confusion about how to fill out her will, and sounded hopeful that she would be able to plan her last days on her own terms.

On the other hand, for Charlotte in Arizona, the mood was initially one of anger and frustration. Looking for humane ways to die, trying to anticipate a future that doesn’t allow for an excellent option, I helped her peel away the outer layers of emotion to find an undercurrent of despondency and fear.

I visited Jill as soon as I arrived to Washington and discovered that a new hurdle had appeared in her eligibility process. Her decline from ALS was now accelerating at a rapid pace and her family doctor had given her just six months left to live. This doctor agreed to take on the role of MAID attending, and another physician in the same practice agreed to be the consulting physician. A participating compounding pharmacy was in the same town. Her family was supportive. It had all been coming together, but on this first visit with Jill, she shared with me that the group home where she had been living had just informed her, they would not allow her to take the medication to die with dignity in their facility regardless of the fact she was eligible. We would have to brainstorm a different location for her on her final day and I reassured her I would help her solve this problem.

In contrast to working with Jill in Washington, I have now spoken by phone with three Arizona residents (including Charlotte) who want to know their options to die with dignity. Arizona does not have a medical aid in dying law so the options are limited. The discussions are frustrating and grim. We discuss hospice care, voluntary stopping eating and drinking (VSED), or moving to a state where medical aid in dying is legal.  Charlotte and the other Arizona folk are limited in their options. Except for VSED, they are dependent on others (palliative care doctors, hospice professionals) for their end-of-life care. They are not able to plan their deaths and the future for them is uncertain.

In these conversations that I’ve had since being back in Washington, I am struck by the contrast of mood. For Jill, while sad and frustrated, she expresses appreciation of having medical aid in dying available to her, knowing that it will help her avoid the final scary months of not knowing when her throat will close up and she will not be able to breathe. She is stunned that her body is failing her and she misses the vibrancy of being able to dance. But she is pleased about being in charge of planning her death on her own terms.

And for me, a volunteer in both states, I feel honored to help Jill and free to grieve with her. I feel satisfied that she has a plan to follow and this is empowering and profound. With her, my care is hands-on, practical, and purposeful. In contrast, I find myself unable to reach a resolution with the Arizona residents. With them I am analytic, albeit empathic, but not particularly helpful, more of a conveyor of bad news. I am filled with helplessness with only empathy to share in their uncertain futures with no ability to make a constructive plan.  

Arizona Update
Activity on the Endorsement Front

The Psychiatric Society of Arizona is considering endorsing AZELO and has agreed to take it to its fall convention. Also, the Arizona Democratic Party has agreed to review MAID in its Platform Committee to see if it fits their mission and values. The Arizona Public Health Association has agreed to consider endorsement since their national association has endorsed MAID. Finally, the Arizona Center for Disability Law has taken a neutral position on the law.

News Around the US

California Amendment SB380

The California End of Life Options Act has been in effect since 6/9/2016. 

As with most states, data shows that a very small percentage of those who qualify for medical aid in dying actually request the prescription (0.5%).  The process to obtain the prescription is so cumbersome that instead of taking several days, it often takes several weeks or months to complete the complicated, bureaucratic multi-step process.  A study done by Kaiser Permanente of Southern California found that 1/3 of the patients did not make it through the 15-day waiting period (1). This is a lot to expect of people who are already dealing with a 6-month prognosis and may be frail, exhausted, or in pain.    

California's proposed Amendment (SB380) has tackled this accessibility issue by reducing the required time between the two oral requests from 15 days to 48 hours and simplified some of the other steps and required paperwork.  Testimony included comments that the amendment removes barriers for those already underserved by healthcare:  ethnic, racially diverse, and rural communities (2).

We are watching other states also exercising due diligence, examining the decades of available data, and adjusting the minutia of their laws accordingly. 

Compassion and Choices Action Network expressed this succinctly in complimenting the California lawmakers:

  • “We applaud you for your efforts to remove unnecessary regulatory roadblocks, as Oregon has done while keeping intact the same basic eligibility requirements and core safeguards that have always protected vulnerable patients.”

Additionally, the original MAID bill was set to expire 1/1/2026 and CA Amendment SB380 repeals this “sunset clause” which extends the law indefinitely. 

Current status as of May 15, 2021: 
Senate Health Committee passed 8-1
Senate Judiciary Committee passed 9-1
Senate Appropriations Committee – hearing set for May 17th.

Stay tuned in future newsletters for updates to this important amendment. 

(1) Nguyen et al. “Characterizing Kaiser Permanente Southern California’s Experience with the California End of Life Option Act in the First Year of Implementation”. JAMA Internal Medicine, H (2018)

(2) Monterey County Palliative Care Cooperative: “In addition, the COVID-19 pandemic has exposed health disparities in access to care among different communities. The hurdles that make it difficult for dying people to use this compassionate law is magnified in communities of color, where patients often don’t have access to the same resources and referral networks that can best inform them about their end-of-life options.”

Volunteer Corner
Kem Ellis, Volunteer Coordinator

Don't believe everything you read!

Kem really will open the AZELO Volunteer office on Monday, May 24 from 1:00-3:00.... (unless he doesn't! But then, you'll never know for sure unless you Zoom in to find out!)

The purpose of Kem's Open Office is to provide an informal, drop-in venue for MAID advocates to come together, get updates, and meet other folks including some of our steering committee members. Meet with us over a cup of coffee, ask questions, share ideas...

Here's your invitation (just click here during this timeframe to join):
Kem's Open Office Drop in between 1:00 - 3:00 on May 24th 

Here's a screenshot of our last Open Office

To find out more about volunteering with AZELO, click this link:
Volunteer Info


Upcoming Events

Dr. Tom Fitch, a retired Oncology & Palliative Care specialist will present the six choices we all have at the end of our lives including Medical Aid in Dying in those states where it is legal. Come with your questions and comments about end-of-life issues.

Click here to register. Your zoom link will be emailed to you:

Six Choices Webinar on May 16th

Are you a working or retired Physician, Nurse Practicioner, Physician's Assistant, RN, Social Worker, Psychiatrist or Psychologist? 
If so, you are invited to attend this exclusive event held for Arizona Healthcare Professionals only.
If Medical Aid in Dying were Legal,
would You Say Yes?
Medical Aid in Dying (MAID) is not yet law in Arizona but it very well may be in another few years. We are beginning now to create an infrastructure of attending and consulting physicians, compounding pharmacies, behavioral health professionals, and nurses and social workers who are ready to participate when the law is passed and well versed in the facts of how the law works.
If MAID were Legal, would You Say Yes? focuses on important questions, we as healthcare professionals should all be prepared to answer:
1)    If you were faced with a six-month terminal illness, relentless pain, and/or an unacceptable quality of life, and MAID was legal, would you consider using the law?
2)    If one of your friends or family members were eligible for the law, would you support their decision to use it?
3)    If one of your patients asked you to assist them in utilizing the law, would you say yes?
To introduce healthcare professionals to medical aid in dying, encourage them to ask questions about the medical and moral implications of supporting MAID, and potentially enlist their support for the efforts of Arizona End of Life Options.

Using a ZOOM presentation, our doctors will give a 15-minute definition of MAID, the requirements for eligibility, and the safeguards built into the law. Then the floor will be open to questions and comments, in a town hall format. In additions to the questions above, other topics might include:

• What are my ethical concerns for using MAID?
• How will my colleagues react to my support of this law for patients?
• What alternatives do we have in Arizona until the law is passed?
• How does my medical training influence “Should I Say Yes?”
• When the law passes, what does implementation look like?

Tom Fitch, MD, is a retired oncologist/hematologist who spent the latter part of his career as a palliative care physician at Phoenix’s Mayo Clinic. He now volunteers for Arizona End of Life Options and leads their Docs with Dignity committee.
Dwight Moore, PhD, a retired industrial psychologist, has helped over 50 families navigate the medical aid in dying law in Washington State and is currently the chair of Arizona End of Life Options.

Click here to register. Your zoom link will be emailed to you:

Would You Say Yes? Webinar on May 21st

Click Here to Donate to Arizona End-of-Life Options
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