29 Oct 2021
(or ‘evidence suggests that’ and cite it) Something I’ve heard repeatedly from older, mentally healthy people is that they wouldn’t want to keep living if they had severe dementia. Then there are two end-of-life narratives that follow: their life ends without ever having severe dementia, or they get severe dementia and live with it for an indefinite amount of time until they die (usually not directly from dementia). We need to build the business and legal processes to enable the end-of-life choice to not live with severe dementia.
Because a dementia-related wish to die is different in nature than a terminally-ill-induced wish to die, we need a different mindset and process.
Currently, the two main hurdles for somebody with severe dementia to take advantage of the physician-assisted dying law are that you need to be[1]:
I’ll assume the reasons for these requirements are that we want to ensure that:
The presumed reasons for these laws are consistant with the reasons somebody with severe dementia would want to take advantage of physician-assisted dying given:
Canada, Luxembourg, Switzerland, and the Netherlands have legalized some form of physician-assisted death and / or euthanasia for patients with severe dementia, though it’s unclear how often it’s been applied to that demographic.[2]
In the US, there are two main logistical hurdles for people who wish to end their life once they have severe dementia:
Imagine that assisted dying is legal for people with severe dementia, but there is not a well-defined procedure for making the request and carrying out the request. Here are a few scenarios I could imagine:
or
The logistics around an assisted death law for somebody with severe dementia are much more complicated than somebody with a six-month prognosis. As a basic framework, we need to define the following:
The mission is to make assisted dying an option for those with severe dementia. To do that, we need to:
The common way to pass a law like this would be to raise money through donations and advocate.
The main idea here is to bootstrap that process with capital, labor, and enthusiasm by providing preparatory legal, business, and emotional support services to those who wish to take advantage of an assisted dying law should they get severe dementia.
A nonprofit with the mission to legalize assisted dying for those with severe dementia is in a unique and privileged position. I can foresee the following independently each taking roughly 10 - 20 years to mature:
This conveniently aligns with those in their 60’s to 80’s who share a common sentiment to not want to continue to live if they have severe dementia. This group of people, in 10 - 20 years, will be in a position where they have a higher chance of having some form of dementia. Now is a particularly unique time to act because the size of that age demographic is big (how do I say this? baby boomers).
These circumstances open up unique advocacy and fundraising advantages. Those who will directly benefit in 10 - 20 years can bootstrap this idea. They can be first clients, helping fund the mission, and those retired might want to contribute to the mission through paid or volunteer advocacy work.
And we can structure and align the nonprofit in such a way that the preparation services are immediately useful for them by providing legal and family / emotional support (the idea would be to perform the preperation services as if we knew it would be legal. This could be troublesome because if a law doesn’t pass in time, then it might be emotionally harmful for clients).
In year 1 and 2, the dialog from the townhalls and education programs will inform the policy draft and initial business plan, and vice versa. In years 3-7, we’ll implement the business plan and refine it along the way. The organization and mission should begin to take a more concrete shape and have better-defined legal and cultural goals. Performing services will be an iterative process, and once we start implementing the business model, we will learn things that will make us want to improve or pivot the services.
(I believe it will take roughly this long because it will support many more people and require more peripheral support systems compared to the terminally-ill assisted death model)
Death and money are two strong forces. An organization like this could easily devolve into a business that chases inheritances and possibly loses sight of it’s mission. This organization should be structured in a way where the organization, employees, and members are never financially, emotionally, or politically incentivised to influence individual decisions around assisted death.
The business plan for the provided services must be clear, commonly agreed upon, and held to that standard. The leadership, doctors, lawyers, and other service providers involved must be incentivised appropriately.
Build a culture of…
Some suggested practical guidelines:
These guidelines will all help to tightly couple service and mission, and incentivize the organization to provide the best service possible to clients both directly and through legal representation of the group. My fear here is that if lack of money is limiting growth or not enough to pay people appropriately, the organization might come up with clever ways to make more money from clients, but in ways that don’t provide a lot of client value. I think this would mean that the guidelines are artificially limiting, and actually disservicing the mission and clients. The goal of these guidelines are to have the ‘right’ amount of money - enough for the mission to be successful, have traction and grow, but not so much that the wrong people are incentivized to lead, or that the organization choses to priorizite sources that give larger sums of money.
That said, I believe the organization will need to be funded primarily through donations until it’s able to sustain itself through the services provided, hopefully no longer than a year or two.
Much like other death-related medical procedures (is this true?), policy and business model will be necessarily coupled. I’ve outlined some of the questions that will need to be answered in the section ‘Outline of legal decisions to be made’. In the end, the law will determine the necessary business infrastructure and processes, but until then, we have to think about and build the process that we’re comfortable with. I believe making this a community-driven process will create the best outcome both legally and culturally. Ideally, the community gives input about what processes would be most helpful to them and their families. This inherently informs us of what processes should be legally required by law to ensure every assisted death is decided upon and carried out in a way that minimizes ambiguity and where everybody is in agreeance that this is what the patient wants. I also believe this communal agreeance on processes will help the law, which will necessitate the processes, get passed.
Education events and events where we receive feedback will mostly be a blurred line until the proposed policy and business models are better defined and in practice. I think the first year might look like a large, crowd-sourced, organized brainstorming session with a clear goal. While I believe that this bootstrapped business model will be a fruitful path to some form of legalized assisted dying for those with severe dementia, there are a lot of policy and business details that would be better decided by a community of interested parties. Additionally, educating and empowering others to contribute will help people be part of the mission, contribute to a brighter future, and be invested in the outcome. It’ll also increase the power behind the mission, both in numbers and passion. Lastly, even if I wrote the most optimal policy and submitted it today, I doubt it would pass. Historically, having a lot of motivated people behind a grassroots push for policy change has led to success (find source?).
Proposed education topics:
Proposed feedback topics:
As I’ve explained above, the main idea here is to bootstrap the passing of an assisted dying policy for those with severe dementia by providing prepatory services for those that may want to take advantage of such policy in the future, should the law pass. Those services will likely fall into the folowing categories:
Other services might just be fostering and supporting a community for people to talk about this.
Ultimately, the community will decide what services they want to receive.
It’ll also be important to understand the financial and peoplepower needed to be successful in this mission, and design a business in a way that ensures this success. Because most of the value from these services is not guaranteed, and it’s received 10 - 20 years in the future, the payment for the services might be feel disportianately pricey. Maybe a better way to view funding for this mission is that we only take donations from those that are active participants in the community, and that the funding is provided equitably from all interested and dedicated parties.
Overall, I think this is the section that could benefit from much more thought. What are other examples of services that are paid up front, but value isn’t delivered for 10 - 20 years? I don’t think that necessarily has to be the case, because I think that we can provide immediate value, and I really think that’s the key to success in any business, especially at the beginning. I think part of the immediate value proposition is the hope that, should you get severe dementia, you might have the option and be legally prepared to take advantage of it. Because of this idea, of getting people totally ‘legally’ prepared, prior to passing the law, is that if the law does get passed in the way intended, and those people meet the criteria of the law (through the legal prep work we’ve done), then they can take advantage of it. This really isn’t much different than any ‘maybe payoff’ except, it’s individually backed, and not backed through taxpayer money (space exploration, science).
I think the advocacy will look similar to advocacy around other major policy change, like LGBTQ rights or marijuana legalization. It’s largely awareness and education. The difference here, is that it has the potential to be led by an older demographic, which stands out from other movements.