A better way to die: Jeremy Make at TEDxMileHigh (Transcript)

Jeremy Make – TRANSCRIPT

The world is filled with choices. Do you know how many different types of Raisin Bran there are? There’s like 35. Thirty-six. There are more than 15 million iPhone apps that you can choose from, and, of course, you can choose to use the Oxford comma, or you can choose to be a totally barbaric philistine; it’s really up to you. When it comes to dying, there are a lot of options too. But we’re not really good about talking about all the options available to us.

Like for me I want to die peacefully, in my sleep, like my grandfather did. Not screaming like the passengers in his car, you know? As it is, some people know the options afforded to them when it comes to end of life care, those with high health literacy, those who know the right questions to ask. And those who talk about health care on a regular basis, so doctors and maybe NPR’s Terry Gross. But for the rest of us, we’re lucky if we get a form to sign on the way into a major surgery that tells us, in quite uncertain terms, the three basic options should something terrible happen.

Not exactly the best time to be asking people if they want aggressive treatments, limited treatments, or comfort care only. We can do better. We must do better for the sake of people who may face the end of life one day. So according to researchers, between like 40 and 68 percent of us. Not you, you’re fine.

You don’t even really need to listen to this TED talk if you don’t want to. Stick around for Jovan’s though; it’s going to be great. Do you remember the movie Big Fish? There’s this great scene in it where the kids all see a vision of their own deaths in the future, and they see it in a witch’s glass eyeball. God, I love that movie! One kid sees a vision of his death when he falls off of a ladder as an old man and that’s how he dies. Another one dies from pooping too hard.

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Really, it’s quite moving. And then the main character sees his death and it’s calm, it’s simple. Oh, so that’s how I go. What if you didn’t need a witch’s glass eyeball to tell you how you were going to die? What if you got to decide for yourself? For those of us who want to decide, I’ve come up with a little crazy notion, something I like to call The Choice Model. This is basically an informed consent form that tells people the advantages and the disadvantages of nine different dying options that should be afforded to them.

It’s very simple. And today, June 25th, 2016, we’re launching a website that outlines all of those options in detail. I call it thechoicemodel.com I’m not very good with naming things. On this website, it’s colorful, it’s easy to translate into Spanish, French, Mandarin Chinese, any language.

It’s written at an eight-grade reading level. And it’s for people who aren’t normally given choice. Who am I kidding? It’s for everyone Candy for all. So this informed consent form doesn’t discuss the religious or the ethical considerations of each of those options because that would be a really long website to scroll through.

But it does tell you those nine options. So I guess you’re probably wondering what those options are. Let’s talk about them. One by one, the nine options of The Choice Model Option one: all available measures.

This includes feeding tubes, breathing machines, medications, surgery, chemotherapy, anything to try to keep you alive as long as possible. Now, remember, the form outlines the advantages and the disadvantages of each option. Not an easy task, especially when we’re trying to do it neutrally. It’s really become my life’s work. My death’s work, whatever.

Option two: limited interventions. This includes less invasive measures, like some medications or very small surgeries. Option three: comfort care only. This is where we use medications to keep people comfortable and pain free, but nothing more. So those are the three options that some people know about, but let’s talk about the options that we don’t really talk about as much.

Option four: no care. At any time, you can refuse medical treatment, it’s up to you. Option five: VSED – voluntary stopping eating and drinking. Now, some people aren’t afforded the option of physician-assisted dying because it’s illegal in 45 states, for the love of are you kidding me? So they use this – Thanks. So they use VSED as a way of subverting the system. It can be brutal, and especially early on, it takes an incredible amount of willpower. But, as we nearly end our life, we tend not to feel hungry or thirsty anyway.

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Our bodies don’t desire and we don’t want food or drink. Except whiskey. Everybody wants whiskey at the end of life. It’s a weird phenomenon. What are we on? Option six: palliative sedation. This is where we use medications to keep a person asleep until they die. Or at least until the end of their brother’s bar mitzvah.

Option seven: physician aid in dying. Currently legal in five whole big states, and now Canada, physician aid in dying, or PAD, is where you have a terminal diagnosis and a prognosis of six months or less, you are competent and can clearly and consistently communicate your wishes, and you can do a one-handed hand stand. Then you are given a prescription medication by your doctor, which you have to purchase yourself and then you have to self-administer the drug.

It’s nice to make it so easy. Option eight: euthanasia Euthanasia is like physician-assisted dying, but instead of you having to do it for yourself, a doctor does it for you. Usually this is for people who cannot or can no longer communicate or self-administer the drug themselves. Option nine: suicide.

You’d thought I’d end on a light one. Now, I know what you’re thinking How can a physician possibly suggest to a patient that they should commit suicide to stop their unbearable suffering and pain? Well, the secret of the model is – stage whisper – they shouldn’t! Because it’s illegal. But there are countries around the world where all of these options have been decriminalized and destigmatized Canada, most recently.

If you’re wondering about talking about suicide with someone who is already suicidal, you’d think that it might push them to commit suicide. Well, you’re wrong, because of research and science. Lots of it, including from The American Foundation for Suicide Prevention, which has even started a campaign called “Talk saves lives” You see? Ideas like informed consent and autonomy and the patient voice are supposed to be bastions of our modern American medical system, so prove it! At the end of life, when choice is really important, let’s give everyone equal access to equal options regardless of their social determinants. Just as I choose a ship to sail in, or house to live in, so I choose a death for my passage from life.

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Nowhere should we indulge the soul more than in dying. Let it go as it lists. If it craves the sword or the noose, or some potion that constricts its veins, on with it! Let it break the chain of slavery. “A person’s life should satisfy others as well. Their death – only themselves. And whatever sort they like is best.” Seneka said it millenia ago. But we’re not so good at actually instituting it. It’s time to give people the choice that they want and that they deserve. It’s becoming a fundamental human right.

I hope you’ll take the time to start the conversation. Know your options, share your choice. Thank you.

Host: Thank you, Jeremy. Why should a provider help someone either directly or indirectly with an option that’s not legal today?

JM: It’s a good question. The first thing you need to know about the model is that it’s respectful and cognizant of every state’s laws. And anyone who tries to subvert those laws is really jeopardizing the whole model and everyone else’s chance of using it. But there’s an example of someone who, I think, used something like The Choice Model, which is Brittany Maynard who had a terminal cancer diagnosis. She lived in California and she moved to Oregon, where physician aid in dying was legal. And she died peacefully, tranquilly, the way that she wanted.

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