Can we please have a conversation on this?

Ok, this is getting written just minutes before I am posting it, so this will probably be pretty rough. Let’s see how this goes.

I follow a woman named Caitlyn Doughty on youtube and on her blog. She is a mortician who talks about death, and grief, and burial practices, etc. She wants people to become more connected to death and grief and such, and is generally not in favor of how our current society generally tries to avoid such things. This is a really rough explanation, but I hope I’m getting the idea across. I really like her youtube series Ask A Mortician and generally support her ideals.

Now, there’s one thing in particular I want to focus on here. On her blog, she is talking about an “End of Life Option Act” currently in debate in California. She is strongly in favor of it, believing that people who are terminally ill should have the option to request medication to peacefully end their lives. Honestly, I can see her point. I would even go so far as to say I support the idea.

Only there’s another side to this. A disability side. A side where doctors (and others) will take it upon themselves to decide whether or not a severely disabled person’s life is worth living. This is a very dangerous and Not OK thing (and there are links out there about it; I’m sorry I don’t have any on hand right now). So in disability communities, often people are absolutely against Death With Dignity legislation, because of how it could easily be abused.

What I think needs to happen is for these two groups to have a conversation. Those who are in favor of things like the End of Life Option Act need to sit down and listen to the concerns of disabled individuals and find ways to address them. The concerns of the disability community are serious and entirely valid, and deserve to be heard.

Which is why, way back in February, I decided to give it a try. I went ahead and emailed Caitlyn via the email address given for Ask A Mortician on her website. This is what I emailed:

Hello. I am a big fan of your work, your book, your youtube channel, and your message of death positivity in general.
You recently posted a link to your facebook page talking about a landmark decision in Canada to allow two women to “die with dignity.” I support such legislation and am a big believer in people being able to take charge of their own deaths.
However, I also run in some circles that are strongly against such legislation. As such, I have a serious question for you. I know you cannot answer individual mail anymore, but I hope it is at least something you are keeping in mind as you do your work.
I am autistic, and am at least somewhat aware of disability issues. One of those issues is the extremely serious problem of doctors believing that disabled lives are not worth living, and doing things like pushing disabled people to not undergo life-saving treatment, or deliberately giving needed treatment so slowly that it does not do any good. One of the responses to this problem is to be against “death with dignity” legislation, under the idea that there is absolutely no way to enact this without leaving it open for abuse by doctors and caregivers of the severely disabled.
I like to believe that there is a way to cover both of these issues. So what I want to know is – as a proponent of death with dignity and such, how are you taking into account the other side of the coin, with the current and horrific problem of people in positions of power already concluding that disabled lives are not worth living, despite the fact that many of those disabled people feel very much so that their lives ARE worth living? What do you think is the best way to prevent abuse of “death with dignity” laws or rulings in the future?
Thank you
Andraya
Now, I knew getting a reply was unlikely. I’m sure she’s very busy with her projects and what’s going on in her life. However, I still found myself hoping that she would see this as a significant enough issue to address. That there would be some acknowledgement from her on how important it is to never decide for someone else whether or not their life is worth living. But, I suppose unsurprisingly, there has been nothing at all. And now she’s seeking support for this End of Life Option Act in California, and all I feel is sadness that the death with dignity people won’t bother to have a conversation with us.
As it is, I don’t think I can fully support death with dignity anymore. At least not until we can have this conversation that we really need to have, addressing the very real concerns regarding possible abuse by doctors. Being heard is important, and it hurts when it seems the concerns of disability activists are seen as irrelevant.
UPDATE: Not long after putting this post up, Order of the Good Death contacted me by email! It was mostly informational, adding some details that weren’t in the blog post about safeguards and such that exist to hopefully prevent abuse. Apparently that is also why they want to send it through the legislature rather than have it go by a ballot – those safeguards would probably be dropped if it went to a ballot measure. So these are the points that Order of the Good Death made regarding safeguards:
  • It allows only qualified, terminally ill and mentally competent adults to request and obtain a prescription from their physician for medication that the patient can self-administer to bring about a peaceful and humane death.  Two physicians must confirm the prognosis is terminal.
  • It requires two witnesses to attest that the request is voluntary.
  • It protects physicians from civil or criminal liability, and from professional disciplinary action, if they fulfill an eligible  individual’s request. Participation by doctors is fully voluntary.
  • It provides safeguards against any coercion of patients: It establishes felony penalties for coercing or forging a request; and it honors a patient’s right to rescind the request.

That the medication is to be self-administered is, I think, the point that I find the most important. I do not believe even these measures completely prevent possible abuse, but it does drastically reduce it.

Plus, I am both surprised and pleased that I was contacted at all. That’s pretty cool.

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2 Comments

Filed under death, issue

2 responses to “Can we please have a conversation on this?

  1. Janice

    As always, a good blog; well thought out and expressed. You are so intelligent, just like your brother. Do you remember both you and he tested in the top 1% in USA in math? I remember.

    Just the other day I was thinking how both of you are smart enough to excel in any chosen career. The biggest difference (and maybe only difference) was that you brother was emotionally stable. He was not bothered that much by needless harassment.

    You were deeply hurt. Also, all the doctors I took you to were unable to diagnose accurately. I remember how you tried to interact… you wanted to interact… your “X” (asperger’s/autism spectrum inability to understand social cues) lead to “Y” – an emotional state of depression through feelings of ostracism & bullying. This in turn, can we say, lead to “Z” – the inability to function in corporate america in your chosen field in order to support yourself in society? Anyways, point being, this disability sure pointed your life in a different direction.

    A legal guardianship would avoid many problems with end of life difficulties. You may not know that you have an uncle who has stage 4 cancer, epilepsy, a heart condition, is bipolar and paranoid schitzophrenic. We do not know how much time he has (I am thinking within 4 months), so my sister filed for guardianship of him, to see that his wishes are honored prior to and up to his death. He understands he will get to live where he wants and keep his cat. He understands his DNR and insists on it.

    But what if he didn’t have sisters who cared about him and were watching out for his interests? What if the state or (heaven forbid) the federal government decides they have the right to intervene and rid the world of “unproductive life”? Don’t underestimate the evil that can come from power and greed. And yes, I am saying there is power and greed in governments, corporations, militaries, etc. So it is not an unreasonable fear to forsee the misuse of such legislation.

    Good blog. Did you ever get a response?

  2. Miss Kitty

    This is also the serious doubt I have about opening up voluntary euthanasia. Even if it were voluntary, there have been times when my depression has made me want to die. The ‘me’ underneath still absolutely wants to live, but it is overruled by the black cloud of depression. What if I found a doctor at this point who decided that because I was autistic I wasn’t worth keeping alive anyway? He could absolutely swear that it was entirely voluntary. It frightens me that an easy way to die could be so easily available. This is a conversation we really need to have.