The Debate: Should Medical Aid in Death Be Legal?

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New Discussion Post

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I’ll pose a question and give my thoughts. In a future newsletter, I’ll include ~3 of my favorite replies. I’ll possibly even make a meme related to your answer.

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What is Medical Aid In Dying?

Hey really chill topic this week. What’re your thoughts on whether medical aid in dying should be legal?

I’ve been re-evaluating my opinion on whether governments should allow physicians to assist patients that want to die. Also known as Medical Aid In Dying (MAiD), because in healthcare even killing yourself needs an ironic acronym.

I’ve historically believed that patients should have autonomy on what happens to them, including the choice of whether or not they want to continue living in their current or deteriorating condition. We allow patients to put “Do Not Resuscitate” as a status, this feels like it would be an extension of that. And if a patient is in constant pain where it doesn’t feel tolerable, or has pre-specified that they don’t want to live in a coma then they should have the option to die. 

I had my first doubts about this concept, oddly, when I watched “Man in the High Castle”. After seeing how bad season 2+ was, I wondered if this was an option I should consider. Jokes.

For those who haven’t seen the show, it’s an alternate reality where Germany wins World War II. There’s a whole plotline about how the state kills people who are terminally ill/crippled because it’s a drag on state resources, and how some people try to avoid people finding out they’re sick because of that. This scene introduces the concept. 

In the real world, we’ve had several programs worldwide where states have legalized MAiD for years. Oregon has had the Death with Dignity Act in place since 1997 (and 8 states + DC have their own version). Belgium has a Euthanasia Law that’s been in place since 2002. New Zealand has had the End of Life Choice Act since 2019. Canada has had medical aid in dying and euthanasia since 2016.

There are usually a few components to these programs:

• Demographic characteristics: For many countries the patient needs to be 18+ and a citizen of the country. However some programs allow minors with parental consent or non-citizens (e.g. Switzerland’s moniker as a suicide tourism destination, if the choclate and cheese can’t change your mind then you really are committed).
• Process to consent: Some countries require minimal consents from the patients, while others need multiple verifications that they understand what they’re signing up for. Many countries require “reflection” periods between consents where patients need to affirm this multiple times with different physicians. Few require formal psych evaluations as well, which I’m surprised is not a more widespread requirement.
• Eligibility: This is where there’s a lot of variance between countries and where a lot of the fights are. Patients need to have medical conditions that fit certain criteria. This could be based on time left to live, what the disease progression looks like, or just based on “suffering”. We’ll talk more about this in a second.
• Process of death: In some countries a doctor administers the drug concoction, and in other countries it is given to the patient to self-administer. This seems like a minor detail, but the act of giving this drug cocktail is the ethical difference between “medical assistance in dying” and “someone passes away from their disease but they’re made more comfortable and they ask to not be resuscitated”. Certain programs also specifically want to create a barrier between the physician and patient when it comes to death, and believe the physician’s role should be the preservation of life. However, this also means the patient needs to physically be able to self-adminster, which excludes patients with certain disease types.

I generally still believe that giving patients this option is net beneficial (which I’ll talk about at the end). But a few issues I think about now when it comes to this topic.

Medicalization of everything vs. MAiD eligibility criteria

There’s been an ongoing debate about whether we should really be medicalizing everything, especially things that are just part of the human condition. For example, Prolonged Grief Disorder was added as a diagnosable mental disorder recently and created lots of debate about whether this is just a normal emotional process. We’re going to see “gaslit” and “anxiety about inflation” in the DSM-5 soon.

I think this could intersect with MAiD in weird ways. For example, Belgium’s criteria does not require a terminal condition. Instead, it’s a relatively subjective determination made by a doctor over the course of several examinations that:

“The patient is in a hopeless medical condition and complains of constant and unbearable physical or mental pain which cannot be relieved.”

This feels a bit too open ended, and prone to including a very wide swath of issues. I get the intent that mental and physical health should be treated the same, or someone in debilitating chronic pain shouldn’t be forced to continue enduring it. But this is happening at a time where there’s increasing pressure to get diagnoses for everyday experiences. 

Canada provides an interesting example. In their latest report they separate people receiving MAiD into two tracks: Track 1 is where natural death is “reasonably foreseeable” like a terminal illness, and Track 2 is where it is “NOT reasonably foreseeable”. 

When you compare the tracks, a much greater proportion of the people without foreseeable deaths say the nature of their suffering for MAiD is isolation/loneliness. This is something that is potentially fixable by, and also an emotion many people feel regularly.

By normalizing aid in dying, I’m worried we’re telling people it’s a potential “path” for many regular things. Including things that could be addressed or relieved. This risks a contagion effect where more people do it because they know someone that did instead of it feeling like a true option of last resort. Imagine how bad it would get if there was a martyrdom movement on social media?

Interlude - Courses!

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Back to the morbid topic at hand.

Could we…fix the disease?

In the last decade, lots of conditions that seemed like death sentences are now cured or manageable with medication. 

Hepatitis C is now curable, HIV was absolutely a death sentence in the 80s/90s but is manageable today on medications, and people with Chronic Myeloid Leukemia now can live close to regular life expectancies. There’s a whole Atlantic article about Cystic Fibrosis patients who were given death sentences that now live full lives but didn’t prepare for that.

Is it possible that people are choosing to cut their lives short just before something comes out that might change their disease? It seems like we might potentially be entering a new era of treatments with new modalities like gene/cell therapies, new quality of life upgrades like Neuralink, or new reasons to live like Half-Life 3 coming out, etc. 

Or even worse, If medical aid in dying is normalized and widespread will the incentives, funding, and political will to discover better treatments be diminished? 

But it’s not like we have a crystal ball for cures so it’s also impossible to know if treatments will work and what timelines they’ll arrive. It also seems wrong to force someone to live indefinitely with the pain of a given disease, especially one which has a poor short-term prognosis. 

If we look across diseases most common among people using MaiD across the world, cancer is overwhelmingly number 1 with relatively short timespans of expected survival. The chances that a breakthrough therapy comes out during this time are relatively low.

I feel least strongly swayed by this point, but thought it was worth at least bringing up.

An excuse to not improve the safety net

A lot of people will point to MAiD as a byproduct of inadequate social safety net programs. You see lots of anecdotal stories around this:

“But Farsoud said his quality of life is not the reason he is applying for MAiD. He applied because he is currently in danger of losing his housing and fears being homeless over dying. “It’s not my first choice.”

Farsoud lives in a rooming house he shares with two other people, and it is currently up for sale. He is on social assistance and says he can’t find anywhere else to live that he can afford.

“I don’t want to die but I don’t want to be homeless more than I don’t want to die,” shared Farsoud.’ -  CityNews

There’s a lot of very valid criticisms about how governments supporting MAiD are doing it in lieu of improving upstream social problems like housing, food security, etc. These problems then seem less like issues that need “fixing” if afflicted people no longer get counted in the numbers. Because, you know, they ceased to exist (but are def haunting politicians). 

For example, if we go back to Canada and the two tracks you see a higher rate of residential instability in people who don’t have a death that’s foreseeable.

This does raise the question about whether these are issues that government intervention can solve vs. something like a disease currently being incurable. Should we figure out a way to build more housing? Should we figure out better ways to reimburse or support caregivers so the family doesn’t feel “burdened”? Should Medicaid pay higher rates to psychiatrists/therapists so accessibility increases for people experiencing isolation/loneliness or meaninglessness? 

Implicit Coercion and Perverse Incentives

There are lots of safeguards in the U.S. medical aid in dying programs to prevent explicit coercion. Getting two independent physicians to approve it, requiring three voluntary consents over longer periods of time, etc. These will never be perfect, but they try hard to check for undue influence. 

Instead it’s the implicit coercion that’s more worrying. When MAiD exists as an option, it’s inevitable that more people will consider it. If someone is told about the cost of a treatment or the requirements of family members to help take care of them, the existence of MAiD creates pressures for a patient to consider it. Considering how many people above chose MAiD because of “perceived burden to family/caregivers”, this feels hard to ignore.

There’s probably some ratty little consultant that figures out putting brochures about educational MAiD brochures in nursing homes or waiting rooms increases these conversations for the “more expensive” patients. Though I’m sure that’s not legal or providers would hate that…right…?

There’s also the payer part of this equation. Payers already are constantly battling providers when it comes to the most expensive patients (see virtually every article about prior authorization). In Oregon, a small but growing number of people (8%) choose to participate in the Dying with Dignity program because of the financial implications of treatment. If you’re a patient and constantly fighting with your insurance over coverage, of course there can be feelings of implicit coercion towards choosing MAiD.

Ways To Make MAiD Work + Parting thoughts

Medical aid in dying has been entering the conversation more because it’s no longer fringe. Canada in particular has been pretty wild to watch. More than 15K+ people have received MAiD in 2023, up from 5631 in 2019. It represents nearly 5% of TOTAL deaths in Canada now. 

Personally? I still think patients should have MAiD as an option. If you’ve ever seen someone really suffering in their last years of life, it’s hard to say they should be forced to endure it. As a Hindu, I know we’re running it back anyway. However I think that:

1. There should be strict criteria around eligibility that focuses on specific disease areas and how terminal a disease is. I think ambiguous areas like “suffering” do lead to a slippery slope. Potentially we should have these requirements pre-specified, similar to organ donor status or a living will.
2. A portion of the healthcare system savings from people that choose MAiD should be used to fund palliative care and hospice, and potentially make those a requirement before choosing MAiD. People should not be choosing MAiD because their surroundings are miserable, that’s a societal and moral failing.

For the most part, it does seem like medical aid in dying programs around the world tend to focus on people with terminal diseases like cancer who are suffering. Most of the news stories are about people who are edge cases in the program. However, the expansion of these programs is leaving more gray areas and to me that’s concerning.

I think Oregon has a model here that makes sense. It focuses on terminal patients with <6 months to live and the criteria is strict. Most of the deaths were for cancer patients and 87% were enrolled in hospice care (so they’re in a place where their pain/suffering is at least managed when they make the decision). MAiD represented ~0.8% of total deaths in the state.

Interestingly, of the 560 prescriptions written in 2023 only ~60% people actually took it! 82 decided not to yet, suggesting they re-contemplated their decision (though it’s a little concerning that there’s 141 people where we don’t know). Maybe giving patients some time to think about it and realizing they need to administer it themselves creates more weight around the decision?

Perhaps the fears of MAiD going totally awry are unfounded if designed properly. Oregon confines it to people that really need it with stricter eligibility criteria without it spiraling too much.

I’m hoping that a newsletter like this can create more nuanced discussion around the topic. It’s why I’m asking for you all to share your thoughts with me on medical aid in death, either anonymously or with name.

Thinkboi out,

Nikhil aka. “Medical Aid in Death and Taxes”

Thanks to Jennifer Moore Ballentine, MA for reading drafts of this

Twitter: ​@nikillinit​

IG: ​@outofpockethealth​

Other posts: ​outofpocket.health/posts​

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