A few more thoughts on Medical Aid in Dying

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The Medical Aid in Death Conversation

A couple weeks ago I wrote about my thoughts on Medical Aid in Death (MAiD), the process when a patient wants to end their life and is given a prescribed cocktail of drugs to do so. I wrote about how my thoughts had been shifting around this complex topic

Coincidentally on the same day, the Wall Street Journal published a piece about how the famous economist Daniel Kahneman chose to go to Switzerland for MAiD. It’s really a beautiful piece, and interesting to see how one of the OG Thinkbois came to that decision.

I asked you all to send me your thoughts on MAiD, and you didn’t disappoint. Here are some of my favorites with very different views.

There are some jokes here about suicide and death. This isn’t meant to suggest suicide or death is a joke, but to bring some normalcy into a conversation that’s frequently considered too taboo to talk about. 

If you or someone you know may be considering suicide, contact the 988 Suicide & Crisis Lifeline: call or text 988 or chat 988lifeline.org.

Hospice is informal MAiD

"Hospice is low key MAiD. The question isn't whether we should do it but when. Right now the hospice process essentially weeds out all the questionable cases and allows for heavy benzo and opiate use at the true end of life. I think this indirect channel we have is the right answer. 

Hospice has criteria to initiate. The key ones are that a clinician needs to make the order and the patient has to have 6 months life expectancy. Inside hospice, opiates and benzodiazepines abound. Any appearance of labored breathing or twitch that could be interpreted as pain is enough indication to give medicines which act to suppress the cardiorespiratory system.

When my grandpa went on hospice, they brought a box packed full of morphine and Ativan which the nurse or family could give. One of my friend’s dad with cancer low key slapped on a few extra fentanyl patches for “pain” pretty early into hospice and passed away shortly after.

This system works because the two key criteria get rid of most ethically dubious situations in MAiD. There are two layers of providers, hospice ordering clinician and hospice nurse giving meds, and it’s only for people who agree to give up pursuing any curative treatment." 

-Anonymous

[NK Note:  If the patient is giving up treatment options anyway, it just becomes a waiting game. I have no doubt in my mind that things are probably done to "accelerate" timetables in situations like this. 

By the time this happens to me, all the recreational drugs will be legalized or prescribable so I’m at least gonna go out with a bang.]

It’s not a “Pull the Plug” decision

"A lot of responses are going to say you’re wrong or right or whatever and I think that’s beside the point. The reason we’re having this debate is because the problem is new. We are building new norms, in public, in real time, and those norms have to change case-by-case as technology changes. As badly as we want there to be a right answer, there isn’t, not even close, and there are going to be scenarios where everyone involved feels the right thing was done and someone from the outside might be truly mortified (ha! Pun not intended but leaving it).

The other piece I’ll add — and I know this from very personal, very recent experience — when someone moves onto palliative or comfort care, it isn’t a ‘pull the plug’ decision. Usually you’re making multiple decisions (for example, a DNR is separate from a DNI, which is separate from a feeding tube, which is separate from…) and even each of those is multi-step. After DNI you then decide what O2 support you’ll tolerate and, when it’s not enough, do you start morphine, and how much, and then once morphine hits a certain amount, do you titrate the O2 down because you’re now prolonging things and so on.

The awful part of this is there is no right answer. Medicine, at least for the next decade (depending on how cracked AI really is, maybe only that long), is too sloppy for there to be one. We’re keeping people alive in ways we have no stories for, no myths for, no novels or movies. There is nothing in the Bible or Vedas or Confucius about these problems. This deep, sensitive, personal moral problem is newer than computers, maybe newer than the internet. We’re all figuring it out together while the technology causing the issue is advancing and changing."

–  Kyle Munkittrick

[NK note: When I read stories like this, sometimes I wonder if we do enough to help the family members that are making a lot of these micro decisions that are very emotionally heavy. The goal of palliative/hospice care is to make the patient comfortable, but does that come at the expense of survivors?]

Payer Course Enrollment Ends Tomorrow + How Transition to VBC

Hopefully the last time I have to interrupt “should you be allowed to kill yourself” with “here’s a course”...

Our “How To Contract With Payors” course ends enrollment tomorrow. If you’re trying to understand what you need to get insurance reimbursement, or want to understand what the contracting process is like and how to better negotiate, come through.

Since we get asked for discounts from startups who really need this, we’re giving 3 discounted seats to startups. Ping david@outofpocket.health, it’s first come first serve. VCs, now's your chance to actually help your portfolio companies by telling them 😉

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The issue is death acceptance

"When I tell people I’m a hospice medical director, the first question is often about medical aid in dying (MAID). But I believe that’s the wrong question. MAID is an “edge case” ethical dilemma, while the deeper, more pressing issue is our collective discomfort with death itself.

We live in a culture that struggles to accept death—both in our own lives and in the lives of those we love. There is a pervasive unease with the normal, uncontrollable process of dying. Despite being eligible for hospice care for the last six months of life, most patients don’t enroll until the final month. Meanwhile, nearly 20% of Medicare spending happens in the last year of life. These patterns point to a much larger problem: we have a death acceptance issue.

Even within hospice, many patients and families avoid words like “death” and “hospice.” They often pursue life-prolonging treatments with little chance of benefit, just to feel like they are taking action. But the real work at the end of life involves learning to live with uncertainty, to let go of control. That is where healing and preparation truly begin—and where I believe our attention and conversations should be focused."

-Charlotte Grinberg

[NK note: As my friends and I have gotten older, many of us have been having some of the conversations with parents around death, wills, advanced directives, etc. There is a very wide range of how accepting different families are to those conversations. There doesn’t even really seem to be a theme on who’s down to talk about it or not - spirituality, income-wise, ethnicity, etc. 

We need to figure out how to normalize those conversations - maybe we should make a certain day of the year "uncomfortable conversation with your parents/spouse” day.]

MAiD is a failure of the State

"Much of my thinking on MAID comes from the Death Panel podcast. I highly encourage OOP readers to check it out, especially their 2023 episode MAID and Austerity w/ Cassandra Kislenko. It discusses how MAID is not just about “compassion” or “dignity” but the logical conclusion of a healthcare system built on austerity, eugenics, and capitalist state violence. Like you, I once saw MAID as a matter of individual patient autonomy rather than one of structural abandonment and cost-cutting, but this doesn't happen in a vacuum.

Like Farsoud, others have pursued MAID not because of unbearable medical suffering, but because the state denied them the means to live. Sophia was refused safe housing but approved for state-assisted death. Jennyfer Hatch was approved for MAID after being denied appropriate care. Her death was featured in a bizarre ad by La Maison Simons, framing it as an act of beauty rather than an indictment of why she had to die.

The government frames MAID as compassion, but it’s about cost savings. As Death Panel put it, “insurance covers death care but not healthcare.” This was predicted by disability theorist Marta Russell, who warned in 1999 that assisted suicide would expand not because of “autonomy” but because it reduces costs. Notably, MAID eligibility expanded in Canada right after the COVID and cost-of-living crises (Department of Justice Canada). The Parliamentary Budget Office calculated MAID savings at nearly $87 million in 2021 alone (PBO).

Like you mentioned, it’s not just the terminally ill seeking MAID, but the poor, the unhoused, and the abandoned. Instead of expanding healthcare, disability supports, and housing, the state expands MAID and justifies it as autonomy. This is not "death with dignity." This is the state saying: We refuse to help you live, but we will help you die."

• Ange Delgado

[NK note: Yeah I think these stories are the ones that are saddest, and really just brings up the ideological question of “how much extra should a society pay to take care of the most vulnerable”. I don’t think there’s a “right” answer, but it also removes incentives to fix many of these problems.

Also…has the phrase “death panel” become a meme now in healthcare circles?]

God’s Plan, Deontology, and The Net Suffering Equation

""Oregon confines it to people that really need it..." 

Really need it according to whom? It seems to me that this argument (the anti-MAiD stance for non-terminal patients) is always made, knowingly or unknowingly, through a mix of divine command theory (DCT) and deontological ethics: the rule is that life is inviolable either because it is a gift from God (DCT) or simply because them's the rules (deontology). I believe the narrow exception that some make to this rule for terminal patients undermines this ethical belief by inadvertently acknowledging that consequentialism and utilitarianism are the only practicable ethical frameworks that don't require constant exceptions. So, in brief, the DCT/deontological rule holds that life is inviolable; however, forcing those suffering from a terminal illness to continue living is too cruel so an outcomes-based exception (i.e., a consequentialist or utilitarian one) must be made.

From a negative consequentialist/utilitarian perspective -- one in which the moral imperative is to reduce negative utility (i.e., suffering) -- there is a compelling argument that the most ethical approach permits all those who wish to end their suffering to do so, as this reduces net negative utility. Under such an ethical framework, the crucial question would be: at what point does net suffering increase because the suffering of those left behind outweighs the reduction in suffering for those who receive MAiD? So, I'm not necessarily arguing the merits of MAiD nor am I claiming that one policy design is inherently superior to another; rather, I'm arguing that greater consideration should be given to the ethical underpinnings that influence one's beliefs and feelings on the subject."

• Seth Neu

[NK Note: I…had to do a lot of googling to understand many words here, but I think I’m being called an ethical framework normie?

I will say that this response made me rethink why exactly do I think that life is mandated to be precious? And also if you extend the utilitarian argument, then you do have to argue about whether the savings from these programs diverts funds to higher utility programs. But then the moral math starts getting me confused]

Firsthand Experience with MAiD

“I found your thought process and nuance on the topic compelling and hadn't actually looked at any of the data. I agree with your take -- that the benefits of MAID programs outweigh the drawbacks -- but that there need to be strong guardrails.

My dad elected to go through MAID in Canada in 2017 when the program was about a year old. He had chronic progressive MS and his condition was deteriorating, with no clear timeline for when the end would come. He also had three sons living in three different cities and increasingly intolerable pain. The program allowed him to take agency: he called all of us, told us about his decision, and we flocked back to Vancouver to share a final week all together as a family. I'm so grateful we got that time.

For a subset of cases -- and I don't know what that subset is -- these programs can facilitate a different type of closure for individuals and their close ones.”

- Anonymous

[NK Note: I got a lot of emails that were stories like this - families that could plan around their loved ones death and get more closure as a result. If you take the utilitarian lens above, then that might actually REDUCE the suffering of people afterwards. Even in the Daniel Kahneman story, most of the focus was on the end trip his family took together.

Damn now I’m rethinking the whole argument again SDKJHALSDHLAKJSHDLKAJSHD this is so hard.]

Parting Thoughts

I don’t really have much else to add to this discourse, but I just wanted to thank everyone that sent me really moving stories and personal anecdotes. I thought I’d get a lot of people angry that I was talking about this so flippantly, but I didn’t get a single negative email and that’s why I love the audience of this newsletter.

This is clearly an evolving area, and I’m glad I can discuss it with you all.

Thinkboi out,

Nikhil aka. “Die, Another Day”

Twitter: ​@nikillinit​

IG: ​@outofpockethealth​

Other posts: ​outofpocket.health/posts​

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