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

“Do you mind me asking,” Maudene asks her neighbor, early one morning, “what you have decided to do when you are no longer able to stay in your home?” Maudene makes a point to bring up end-of-life issues with the other neighborhood walkers whenever she’s out walking her two dachshunds.

You may remember AZELO volunteer Maudene Fruehwirth who was spotlighted in our June 15th newsletter. Maudene spoke about her passion for MAID and how she volunteers her time which includes encouraging end-of-life discussions with her neighbors. 
 
Research shows that 30% of all adults volunteer and 50% of seniors. Women are more likely than men to volunteer and those from a higher social/economic/education level contribute more time and money. Less than 10% volunteer for more than 10 hours a week. The average person volunteers about 1.5 hours a week.

Volunteers are motivated by a variety of factors: altruism (am I doing something worthwhile), affiliation (do I belong, feel appreciated, meet new people), achievement (am I accomplishing something), and authority (do I have an impact). People drop out of volunteering because of personal changes such as getting a job, developing medical issues, getting caught up in work commitments, or because they get married or have children.

We normally think of volunteers as “free” help, but properly recruiting, screening, orienting, training, motivating, and supporting volunteers takes a lot of thought and care. Leaders in non-profits do not have the normal “incentives” (pay, bonuses, perks, lay-offs, or dismissal) that corporations have. And volunteers have their own constellation of needs and motives, a wide variety of how much time they wish to spend, and a high need for connecting with and fitting in with the other volunteers.

At Arizona End of Life Options, we have been fortunate enough to have Kem Ellis as our volunteer coordinator. In addition to developing the intake program and chatting with most of the volunteers, he has his bi-monthly “open office” on zoom for people to share their successes, ask questions, and socialize.

Training a volunteer to interact with the public about MAID takes time as there is a lot to learn. The intricacies of the medical aid in dying bill, how the legislature works, our many projects, and the nuances of how to deal with objections some have about this end-of-life choice are complicated. We want our volunteers to be prepared when dealing with the public and the legislators. On the horizon is our Academy for those volunteers who are interested in taking on leadership positions within our organization.

Here are a few tips if you wish to volunteer or increase the amount you volunteer:

• Figure out how much time you want to spend. If you have 10 minutes a week, let us know. There are useful activities you can do in that amount of time such as letter writing.
• Know what you want to achieve. What motivates you? Where do you see your skills best fitting?
• Allow yourself a bit of time to learn about us. We have valuable webinars, YouTube programs, and steering committee members who are willing to talk.
• If you commit to something, please do it.

Maudene reflects on how neighborhood conversations used to revolve around their pets, complaints about their HOA, or the weather, but now have evolved into something much deeper: the concerns they all share about aging, failing health, and plans for when they will need more support and care. Maudene’s conversations have created an intimacy among her neighbors that wasn't there before.

“My 10 minutes of volunteer work per day?” Maudene reflects, “well, I’m referring people to the AZELO website, recommending the AZELO webinars, or encouraging people to join our local action team.”

We are currently calling for volunteers to join their legislative district's action team. If you have done so already, thank you!

If not, today is an opportunity to find out more, as Kem's open office is from 10:00 -12:00. Click the link below to join him and other AZELO supporters with any questions, comments, or ideas. If you are unsure of which legislative district you're in, we can look it up for you. If you are wondering just what you'll be doing within your action team, Kem can fill you in. Kem can also tell you how many supporters are already on your team list. Some are very large (Phoenix areas, of course!) others desperately need members (LD's 4, 5, 8, and 29: we need you!). 

Join us today! We are like-minded folk who share a common concern: we all want to live well into old age, but also see the wisdom in planning a good death when that time comes. 

Click here on July 15th between 10:00-12:00 to join Kem's Open Office

Not everyone is blessed to have two fathers so I am one of the lucky few. You see, I was adopted as a baby by a loving mother and father and at the age of 14, they helped me to locate my birth family. Our families grew close and I ended up having a unique and special relationship with each of my fathers.
 
Sadly, both of these men died rather young. My father was 67 years old when he lost his 3rd bout with cancer and my birth-father died at 59 after cancer ended his life with short notice. While their cancer journeys were very different, both of these men suffered tremendously in their own ways. I watched helplessly as they both endured their final days with anxiety, anger, depression, and despair as weakness, confusion and disability took over their lives, and the looks in their eyes as the disease progression and decline overtook them continues to haunt me to this day. I can still hear sounds of unimaginable pain, I still feel the jolt of uncharacteristic behaviors and spoken words caused by terminal agitation, and still feel the tight squeezing of my hand accompanied by pleas for death. Neither wanted or was ready to die, so MAID, had it been a legal option and something they wished to utilize, would not have been suicide but an assertion of control, a way to die on their own terms. Watching both of them lose control in their own respective ways was heartbreaking for me and has had a lasting impression.
 
My work with those who are terminal has landed me in the space of countless individuals suffering at the end of life, people who pray to not awaken from their night’s sleep. I recall a time when a hospice patient’s daughter and I observed her mother in a memory care unit pacing the hallway, running into walls, not knowing how to turn herself around, and behaving in a way that would have mortified her in her earlier days. Ridden with guilt and anxiety, the daughter tearfully confided, “I can’t sleep at night because my mother made me promise that before she got to this point, I would take her out back and shoot her. Obviously,” she continued, “she was half-joking… but was she? Was she speaking to me metaphorically? Was there a way I could have saved her from this?” The distressed daughter helplessly sat and cried as I sat nearby, providing all I could, which was just my presence and validation of her feelings.
 
Frank discussion before we enter a debilitated state is essential. Here are three excellent movie recommendations. Watch one of these movies with a friend or family member and then have a discussion about it. Listen and reflect on what your companion has to say.
 
One True Thing (1998) starring Meryl Streep as Kate who suffers from cancer and dies of an intentional overdose of morphine. Question: Can you see yourself taking the same action if you were to become terminally ill?
 
Still Alice (2014) is about a brilliant and active woman, played by Julianne Moore who is diagnosed with early-onset dementia. As her disease progresses, she comes up with a well, thought-out plan to take her own life but has to do so in secret without telling anyone. Question: Why are end-of-life discussions taboo in our society?
 
Me Before You (2016) stars Sam Claflin as Will, who is a young, successful adrenaline junkie living a life full of adventure. After an injury leaves him paralyzed, he opts to take advantage of MAID in a foreign country where euthanasia is legal regardless of whether a person has a terminal illness. Question: If an individual of sound mind is living with a condition that cannot be treated, should they have the right to end it?
 
In my line of work, I have spent thousands of hours in facilities and homes where I have been witness to severe, needless suffering, and I’m struck by the lack of frank discussion about this. I’ll start the conversation with this statement: MAID is not for everyone, but it should be a legal option everywhere for those that choose it and this is why I am a relentless advocate for the legalization of medical aid in dying. What about you? Where do you stand on these issues?

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