Unsure about End of Life Options?

“What is the name of that organization you’re working with again? I can’t find it on the internet because I can’t ever remember!” I hear this complaint occasionally and our members too seem to know it to be a cumbersome title, which is why we often call ourselves by the acronym AZELO. What are end of life options? Why are they important? What is it that are we campaigning for at AZELO?

I tried to explain this to a lady recently who cut me off. “I’ll deal with that when I’m on my deathbed,” she said, and then she abruptly changed the subject.

But unless people die suddenly due to an accident or some traumatic event, most people do have options about how and when their life will end which will require decisions to be made before they reach their “deathbed.” If diagnosed with some terminal disease, we can choose medical treatment which usually prolongs our lives or to forgo medical treatment and allow the natural course of a disease to manifest as it will.

Cancer treatments often add months or years to a person’s lifespan, and can even put a person into temporary or complete remission. Sometimes however, the decision to treat is a tough one if it means the end of a person’s qualify of life. When my father was diagnosed with end stage Malignant Melanoma and given just months to live, his first question was, “What are my options?” His oncologist was both direct and informative. “The treatment for your cancer,” he stated, “is not very promising. It will give you a 20% chance of prolonging your life another year or two. But the side effects of the treatment will probably ruin the quality of life you now enjoy.”

My father was quiet as he absorbed this information, but within minutes he turned to me and said the decision was an easy one to make. He was clear when he said he would rather enjoy the few months he had left, than to suffer for a year or two before dying.

The doctor turned out to be right. My father lived well for the next five months, before abruptly sinking into a coma from metastases to his brain which killed him in a matter of days. Although I was sad to see my father die so quickly, I benefited greatly with his decision to spend his last five months relatively symptom free which allowed us to spend that time together sharing in his life review. My father was a professional nature cinematographer and my last memories with him revolve around spending whole days in his studio going through his early pictures while he shared stories from his past. He taught me how to use Adobe Photoshop and we worked together on boxes of old family photos and tintypes from the attic, digitizing them, then professionally touching them up.

Another person may have chosen the treatment option with a longer lifespan, and I have no doubt that that option may be fulfilling as well. But my dad knew he didn't want to be sick, even if it meant a shorter life. And I know that the important work we did together probably wouldn't have happened if he had chosen that path.

We each have a right to determine how our last stage of life will play out. And this right is protected through Federal law in the Uniform Health-care Decisions Act which was enacted in 1993, and within Arizona law specifically in Title 36 which addresses Public Health and Safety in Chapter 32: Living Wills and Health Care Directives. (Note: it's a long scroll down to Chapter 32.)

This law specifies that Arizonans have the right to determine how our care and maintenance will be handled even if we no longer have the mental capacity of directing it. This is why it is so important to have advance directives made out in advance and a surrogate health care decision-maker who has agreed to speak up for us if and when the time comes that we are no longer able to speak for ourselves. This is not something that is created once and then set in stone for the rest of our lives but is rather meant to be a living document that should be altered as our circumstances and preferences evolve and change with time.

Optimally, we will be fortunate like my father was, to maintain our mental capacity to the end, enabling us to make and dictate our own decisions for ourselves. But in the event we lose that capacity through dementia or some other cause, our wishes can still be followed through the surrogate we’ve designated who has agreed to follow our wishes as laid out in our advance directive. Without these legal safeguards in place, we risk having those end of life decisions made by someone else and according to their wishes and not our own. (Unfortunately currently in the US, we cannot specify medical aid in dying in the case of dementia.)

The premise that there is no one path that fits all, but that each person has a right to choose for themselves how their life journey will end is fundamental to our basic rights as Americans. It’s not for others to decide for us, or to judge what we decide; not our families, our religious leaders, the medical establishment or our government. Our basic freedoms in America give us the right to choose for ourselves and our laws ensure that this will be supported. That’s why the Arizona End-of-Life Options banner includes the mantra, “Your Life - Your Death - Your Choice.”

It is your choice in Arizona to choose between the following end of life options:

•      Pursuing all treatment interventions as recommended by a medical professional with the goal of prolonging life to its fullest regardless of impact on quality of life.

•      Trying treatments, then evaluating the effectiveness, possibly changing courses of treatment protocols supplementing treatment with another program, or stopping treatment mid-course if side effects prove to be too much to bear.

•      Allowing the dying process to evolve naturally without treatment, with or without the aid of Hospice and/or without Palliative Care to maximize comfort measures.  

•      Using Voluntary Stopping of Eating and Drinking (VSED) to quicken the dying process before the last stages of dying become unbearable.

There is one end of life option that is not currently available for Arizonans as it is in nine other states and the District of Columbia, and that is Medical Aid in Dying. Our aim at AZELO is not to dictate that anyone use this option, but that it be legalized in our state so that our residents can legally choose this additional choice in addition to the other options already available in our state.

If you feel strongly as we do, that Arizonans should have the right to also choose Medical Aid in Dying, not for others, but for ourselves, then please join us in our campaign. Educating the public on the facts about this method is the very first step because only with knowledge can people best formulate their own opinion.

Next, we must let our legislators know how we feel. Communicating to our elected leaders if we want this option in Arizona is the only way we as constituents can use our influence to bring about change. Additionally, we can gather endorsements from groups and organizations that are supportive of this option to show an additional source of support for this cause.   

Photo by Darren Makowichuk/postmedia file

Opinion: The pandemic has brought out a greater awareness of end-of-life planning

Calgary Herald; Nov 28, 2020 ~The COVID pandemic has turned out to be a “call to action” for end-of-life planning. News reports suggest that requests for wills have gone up dramatically. More people are discussing their end-of-life preferences with loved ones and are preparing personal directives.

This is a great improvement on our society’s usual head-in-the-sand approach to death. In that sense, COVID has done us a favour by forcing people to consider what they would prefer the end of their life to look like and how they can help to ensure — to the extent possible — that it ends up that way.

Upcoming Events

• Saturday, December 5, 9a-3:30p
• This year the annual Secular Summit is free on Zoom!
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• September 1, 2015: City of Bisbee becomes first Arizona city to “Recognize the Practice of Aid in Dying as a Desirable Medical Choice.”
• December 15, 2015: The Tucson Mayor and City Council passed a Memorial by a unanimous vote supporting Aid in Dying (aka Death with Dignity). 
• November 13, 2018: Sedona City Council unanimously passes resolution recognizing aid-in-dying as a desirable medical choice.