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Aid in Dying: Whose Suffering are we Ending?

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She asks if I ever wanted to give up, when I was so ill like her. She wants to give up.

This is the first message I see when I check my phone in the still dark cold of the morning before heading out for my walk. My walk then serves as meditation time to become clear before staring my day working with clients with acute and chronic illnesses.

I wonder about the effect of how the day before, the Tucson Mayor and City Council voted unanimously to support Aid in Dying, "which enables a competent, terminally ill adult to obtain a life-ending medication should their suffering become unbearable." They urged the legislature to legalize it.

The answer to the question I started with is yes, I did want to give up when I was so ill. I often felt suicidal, especially after seeking out medical care and getting turned down because I was too ill, too poor, or lived too far away when I lived rurally.

Denying services to someone in need can be seen as a message to "go ahead and die." Individual health care practitioners can give that message too, as I learned not only from the passive lack of care I myself experienced at times, but from a friend's distress after he took a job in the psychiatric ward at a large hospital serving primarily low-income people. Most of the patients come in against their will, after a suicide attempt or other behavior that indicates they may be a risk to themselves or others. While he understood how his coworkers burned out, it was still disturbing when they expressed resentment at their patients and saw them as a burden.

The message to die also comes when people talk about a life not worth living, referring to a life like yours. That can morph into a desire to help you end your suffering. When I was five, a tumor was removed from my bladder. Every six months for several years, I went back into the hospital to be scoped to see if the tumor was growing back. With the technology of the day, that was a very painful process; while the actual procedure was done under anesthesia, they then inserted a catheter into my tiny urethra. The quick removal of the catheter was done without anesthesia. But the worst pain was to follow; I was in agony the first time I'd pee with that bloody cracked open part of my body. And of course over the whole experience hung the fear that the tumor would grow back.

Other kids were in harder situations. I wondered about the white girl with black toes in a nearby bed, and my mother explained that was because she had been kept in the garage and given only Coca-Cola. Then there was a girl of perhaps three, who danced on the table in the playroom. When I asked why she was allowed to do that, my mother said, "Because she's dying."

After I learned to read, on the ward I discovered a book written for children in the hospital. At last someone who understood! But what did they tell me? Put your hand on your pillow, and that will be a sign to God to take you. I did it. The pain in the hospital was bad, but it was nothing compared to the abuse I suffered at home. I was ready to have it stop the only way a six year old could.

I awoke the next morning, and went on with my life. I'm thankful I did. To the woman who wanted to give up. I said, "I felt that way and am thankful I chose to hang on." She is not my client; while we can communicate, we don't share the same first language, and I felt thankful that I was able to refer her to someone working in her native language, to coach her in the brain retraining program that helped me recover from severe chronic fatigue and multiple chemical sensitivities. These are not illnesses often classified as terminal, but people do die in great suffering with these illnesses.

And it is so very hard to witness people suffering. Pain medication only goes so far, as I have witnessed not only in my professional life, but also in my mother's pain with her spine cracking from metastatic lung cancer. I was relieved when she died. And also there was healing in witnessing the natural process of letting go in her dying process.

I'd like to die many years from now in my sleep. But if I develop a terminal illness, I don't want to do the equivalent of forcing a naturally winding river into a concrete chute to get the water to the desired destination in a neater way. To heal from chronic illness, I needed to examine what it is to try to feel safe by controlling things, rather than surrender to what is much bigger than I am. So I wonder how much people are seeking the end of the suffering of the terminally ill, and how much it is trying to control things, so we feel less afraid, afraid of what it is to be so vulnerable as we lose functioning. To be vulnerable as we rest in the arms of others, whether they are family and friends, or compassionate strangers who radiate a universal love and perhaps have time to get to know us a little, to share in the life that is ending in its own timing.

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