[TW for discussions of terminal diseases, end of life decisions, and suicide]
I was not, originally, going to talk in detail about my family on here. I think it’s probably already too easy, if someone really wanted to track me down, to find out who I am. But then my brother went to Afghanistan, my older brother became a vegetarian (this is a boy who spent roughly 10 years harping on about meat as if it proved his masculinity) and an animal rescue advocate, and Rick “Garbageface” Santorum reaffirmed that his “prolife” (by which he means, of course, pro-forcibly prolonging the lives of fetuses, no matter the circumstance or health of the mother, and people who want to die because their bodies are rotting away with them still trapped inside) included end of life decisions (i.e. he’s against there being any). The significance of this, of course, is that taking away end of life decisions resonates down to my very core, because both of my parents are doctors. Also, my grandmother died after a debilitating stroke that not only physically destroyed her, but wrecked her memory. My grandfather died after living with Alzheimers for many, many years. About as close as he got to showing signs of personality or happiness in the last year and a half (THAT’S 547 DAYS) was tapping his foot to familiar polka music that he’d been listening to and playing nearly all his life. He spent most of the rest of his time screaming or moaning.
Now, I’ll agree that euthanasia is a very, very tricky issue that must be handled with utmost care. I do believe it should be an option, actually, for those of us at risk for diseases like Alzheimers who may, when the time comes, not have the physical or mental capacity to take advantage of laws like Oregon’s Death with Dignity.
But Death with Dignity is pretty clearly not homicide, as conservative “prolife”rs would like to paint it. It’s pretty clearly not encouraging people to kill themselves willy-nilly. It’s pretty clearly a matter of individual liberty and having it available is pretty clearly not only logical, but also compassionate (something I hear international religious figures throughout space and time have been pretty big on). I don’t have a copy of The Stoic Philosophy of Seneca or I would quote you something profound from his essay “On Suicide,” where he basically says something that made me feel profoundly better about life at a time when I was very depressed – don’t sweat it, and struggle as hard as you can, because when it becomes too much, and life really truly isn’t worth living, there’s a way out. Until you get to that point, there’s no use in worrying too much about it. He says a bunch of other stuff too, some of it quite problematic, but that always struck me, the assertion of that little bit of very basic and reassuring control: if you really really can’t take it, you don’t have to. I have found this idea to be very comforting – and very empowering. The idea that there is an open door away from the suffering of this life has given me strength, sometimes, to keep going, when I would otherwise have just felt crushed and helpless. And I think Cody Curtis, main subject of the documentary “How to Die in Oregon” also found the strength to continue on long past the date she set for her death because the medication was in her house and it was under her control – no longer waiting to die, but choosing to live on a bit longer.
My mother is a doctor. (As recently as a decade ago, people would still correct me to say that she was a nurse. I think medical television shows have actually done a lot to normalize the idea of female doctors in people’s minds, though we are still far from an ideal world on that score. She has received far nastier attacks on her advocacy for compassionate ends than my father, very likely due to her gender.) As a doctor in the Neonatal Intensive Care Unit, her patients are incapable of making their own end of life calls, but she has always strongly advocated that non-intervention and comfort in critical cases should always be presented to the parents as an option amongst the others. Not pushed upon, not recommended. Just this: we can ease this baby out of this life, if that is what you decide is best for your family and your baby. For that, she has been brutally verbally attacked by superiors in her hospital and even a rather (in)famous radio personality (infamous for other garbagemouthing, of course). She was accused of “promoting death in the nursery,” whatever the fucking hell that means*.
My father, after a long stint as a surgeon, works in the adult Intensive Care Unit. People are little more used to tough end of life decisions on that end of the life. To my knowledge, though he has had individual disagreements with families of his patients about what constitutes compassionate care, he has never been attacked for his beliefs the way my mother has been. He too is a strong advocate of both death with dignity (illegal in his state of residence) and of presenting cessation of intervention and provision of comforting care as an option.
My parents talked with me about these issues when I was young. They would come home from the hospital obviously upset, and hug me. I would ask what was wrong. They would say someone very sick and in a lot of pain finally passed on today, and that they were sad that person was gone from the world, but they were happy that person was no longer in pain. I thought back to the week I’d been in bed with viral meningitis, the worst pain I had ever known in my short life, imagined that pain x100 for years, not just a week, and nodded solemnly. I remember visiting a classmate of my older brother’s, who was in my father’s ICU with an aggressive and treatment resistant kind of cancer. I didn’t really know him, and I heard he passed on later. I just remember watching him play video games with my brother and feeling confident that my dad wouldn’t let him suffer. Either Dr. Superdad would make him better or Dr. Superdad would make him as comfortable as possible. And that was that. I don’t even think my dad was his doctor, but I had that much confidence in my Dr. Superdad and that much belief in the ideals he and my mother taught me.
My parents are getting frailer. My last surviving grandparent is probably on her last legs. My baby brother is in Afghanistan. Life is, generally, extremely unpredictable. I tear up at the thought of any of the people I love dying. That’s natural. But to me, death has never been the thing to fear. Death is not an evil. Death is not a thing to avoid above all else. If and when my loved ones make their end of life decisions, I will be right by their sides, supporting them in struggle or in acceptance. I will remind them that they have a choice, a choice that is completely and utterly theirs, and if it should come to pass that they are no longer capable of exercising that choice, I will take the utmost compassion and care in respecting their wishes if I am called upon to make that choice for them.
As for me, I am and always will be no-heroic-measures DNR, an organ donor, comfortable with the idea of my own demise, and profoundly uncomfortable with the idea that, in the case of terminal illness or sudden horrific accident, I might not be granted the dignity and respect to make my own decisions about my own body and life. Because it’s not like biology is EVER wrong. Oh wait, appendixes.
To wrap up, here is the letter I wrote my parents when I finished watching the documentary “How to Die in Oregon.” Highly recommended documentary, by the by.
Hi Mom and Dad,
I should be sleeping now, but I had to send you a message. I just finished watching the documentary “How to Die in Oregon.” As you might be able to guess from the title, it’s about Oregon’s Death with Dignity law. It made me blub, but in a very good way.
In the Republican debate the other day, Rick “Total Garbageasshat” Santorum reaffirmed his “prolife” (which is really an inherently violent, anti-life and anti-choice ideology) position as regards not only abortion but also end of life decisions. The way our country is going really freaks the hell out of me. It’s like Republicans have chosen to crusade for absolute individual liberty EXCEPT in the cases where legal intervention could cause the absolute most personal and emotional damage. That they do it in the name of a religion many Americans don’t believe in and in a way that paints all Americans who don’t believe it as not-real-Americans also freaks the hell out of me.
So I wanted to say thanks. Thank you for the advocacy work you’ve done about end of life decisions. Thank you for offering compassionate end options to your patients. Thank you for talking about this issues with me when I was young and for teaching me not to be a Garbagehead McIgnorantpants.
Lastly, if and when it should ever become necessary to talk about end of life decisions (Dad, I know we’ve had those semi-facetious discussions about Alaska) I want you to know that I support you fully and love you and will be there through thick and thin.
PS I know what you do is not like Oregon’s Death with Dignity ends, but the issues are deeply intertwined and offering the option that you do is just as important a kind of end of life decision as the kind someone makes for hirself.
*Others have said much about the inherent violence of the “prolife” ideology. What really bothers me are the things they say like “Death with Dignity is murder!” In the documentary, they showed some “prolife” protesters in Washington state, who were holding signs that said things like “Do no harm” or “Hospitals now prescribe Death, one person at a time” or “Death is not the answer to a cry for help!” or some bullshit about how the old or differently-abled are not expendable.
The “Do no harm” protestor clearly has issues with hir own mortality, to regard death as a great harm, and also just as clearly has never been near anyone suffering horribly who wanted to end it all. Prolonging the life of someone whose eyeballs are popping out because of hir brain tumors, or someone whose ribs feel like they’re going to crack because of abdominal fluid build up – THAT would be doing harm (if done against hir will, of course). Hospitals are not prescribing death. They are prescribing medication (many of which, while not for the purposes of ending a life, are perfectly capable of doing so if someone takes many of them at once!) which a person may use or not use to end hir life. No more are kitchen stores selling death by selling steak knives. And finally – the desire of terminally ill and suffering people to end their lives is a “cry for help,” but not as you mean it. They already know there is no more life-prolonging, suffering-relieving help to be had in this world. A “cry for help” as the sign means it is when someone swallows a whole bunch of pills and then calls an ambulance. A cry for help implies that there can be help that will alleviate suffering. These people are crying for help – an end to their suffering, which can tragically only be achieved with the cessation of life.
Every mentally competent adult person (and I would imagine a few who are not adult nor considered by the neurotypically-hegemonic establishment to be competent) has the right to control hir own life. Which should include whether or not it continues.