On a brisk day at a restaurant outside Chicago, Deb Robertson sat with her teenage grandson to talk about her death.
She’ll probably miss his high school graduation. She declined the extended warranty on her car. Sometimes she wonders who will be at her funeral.
Those things don’t frighten her much. The 65-year-old didn’t cry when she learned two months ago that the cancerous tumors in her liver were spreading, portending a tormented death.
But later, she received a call. A bill moving through the Illinois Legislature to allow certain terminally ill patients to end their own lives with a doctor’s help had made progress.
Then she cried.
“Medical-aid in dying is not me choosing to die,” she says she told her 17-year-old grandson. “I am going to die. But it is my way of having a little bit more control over what it looks like in the end.”
That same conversation is happening beside hospital beds and around dinner tables across the country, as Americans who are nearing life’s end negotiate the terms with themselves, their families and, now, state lawmakers.
The flip side of our ability to prolong life more and more successfully is that we equip ourselves to extend suffering more and more unbearably.
Puritanical attitudes around the right to die will impact a vast majority of people in terrible ways that will largely get ignored as on the other end of it the victims have no voice and often the family is mourning and wants to move on or just doesn’t even fully realize how terrible that end was.
But the doctors and medical staff…
The people I know well in those roles get upset when healthy patients take a turn for the worse and die when they had so much life before that. But by far the most upset I see them is when a family member of a patient decides because of beliefs to choose life prolonging options that are the equivalent of extended torture.
As our medical capabilities improve we really need to continually rethink just what it means to “do no harm.”
My grandpa passed a year ago now, COPD. Likely honestly a heart attack after all the steroid meds for his lungs created heart problems including a heart aneurysm. When he was diagnosed way back in 2006 they told us he had 5 years if he was lucky, I didn’t think he’d see me graduate HS. Well he had a lot more than 5 years in him but after about 2014 it was all shit. He started telling my grandma that he was ready to die, wanted to die, in 2018, he begged for it on hard nights. He tried to kill himself in 2021 and 2022. Both attempts left him strapped to a hospital bed “for his safety” as he struggled to breathe, he hadn’t been able to reliably breathe laying on his back for several years by then but they didn’t care as long as he lived.
I never felt anything but sympathy for him after those attempts. As someone with chronic lifelong asthma, I know how my end will go. I know what it’s like to suffocate and struggle to breathe and in case anyone wonders, it fucking sucks. It’s terrifying, it’s slow, and you know it’s coming. Panic is inevitable. He felt like that for nearly 10 fucking years. He told me once after it had gotten bad that he’d always felt so bad for me as a kid to have asthma but now he finally understood, he said I was so brave to have dealt with it for so long but in that moment I didn’t feel brave I felt lucky. When I use my inhaler I can breathe again, for him it just made him struggle less. For a long time I wished he would die, my absolute favorite person on the planet, and I wanted them dead. It destroyed me mentally for years. When he finally did die it was horribly sad and also such a massive relief for everyone to know that at least he wasn’t suffering anymore.
I say all this, partially to get it off my chest but mostly to say, if we are going to prolong life we need to also give people the option to check out. Life isn’t life without quality of health, it’s just suffering. Prolonging suffering makes use torturers, it’s not a saving grace. If we have the capacity to do this for our pets then people deserve the same mercy.
Ideas and times progress, maybe it’s time to change that oath to something along the lines of “do the least harm”.
Best thing to ask your doctor is what they would do in the same situation. They usually give you the bestg medical advice answer but their personal answer can be very different with what they have seen. Although some won’t answer that question which is in itself a kind of answer.
My mom was an RN and spent time doing basically everything. She said her time in oncology, geriatrics, and hospice made her never want to treat cancer or undergo prolonging, because the chance of it extending the quality life was slim and quantity isn’t worth it when it’s miserable.
She died of cervical cancer when I was 23 (it was stage 3 by the time she went in for dx, so she knew something was wrong and chose not to do anything about it) and the only treatment she got was oxycodone and having me get weed for her for the intense nausea that comes from smoking cigarettes on oxycodone. She was in hospice though.
I, similarly, probably won’t undergo treatment if I am similarly afflicted, unless our treatments evolve from a toxic cocktail to something with more chance of working and fewer horrible side effects.
