13 March 2014

Let’s all talk about death

End-of-life healthcare is expensive. The top 5% of end-of-life patients incur nearly half of the nation’s healthcare costs. So one of the objections some Americans raise to the idea of universal healthcare, is that we simply can’t afford to offer everyone that kind of care. The assumption is that if everyone has healthcare, everyone will want to be kept alive as long as possible.

Except that’s not true. It turns out that if you actually ask people what they would like in terms of end-of-life care before they are unconscious on a drip feed or in a coma, they say that no, they don’t want to be kept alive if they’re in a coma, they don’t want chemotherapy if it’s only going to keep them alive for another 3 months and will make them feel miserable, they don’t want an extra 6 months of life confined to bed and attached to tubing and machinery.

What’s more, research shows that people who have less spent on their care during the last few months of their life have a better quality of death. Basically, beyond a certain point, you can keep people alive, but you keep them alive in constant misery.

The problem is, you have to get people to indicate their wishes before they get to that point. Otherwise, relatives who are forced to make the decisions will err on the side of keeping the patient alive at all costs, and medical professionals will quietly go along with that, because no doctor or nurse wants to try and talk someone into letting their relative die.

In fact, it’s best to get people to indicate their wishes before they are terminally ill at all, because otherwise it’s a really horrible conversation for everyone involved. And that means that mostly, it doesn’t happen.

But in La Crosse Wisconsin, 96% of people who reach the end of their lives are found to have set out specific directions regarding their end-of-life care and their death; an amazingly high number. NPR Planet Money has the story of how that happened, but the end result is that La Crosse has sharply reduced end-of-life healthcare costs—$18,000 for the last 2 years of life, compared to $26,000 national average, or $75,000 for New York.

So, if we could persuade people to record their actual preferences for end-of-life treatment beforehand, we could give them all the medical care they wanted, and save money, and make the experience far better for everyone. The process would involve each person having a conversation with a doctor, answering some questions about their wishes, and having the resulting document legally witnessed. Simple enough, so why isn’t that being done?

Well, as NPR explains, an attempt was made to provide a financial incentive for people to engage in that kind of end-of-life planning. The Washington Post explains what happened next, thanks to Sarah Palin:

[Palin’s] first post was about a proposal in the emerging bill that would allow Medicare to pay for doctor’s appointments for patients to discuss living wills and other end-of-life issues. Palin’s decision to call this pending provision a “death panel” ignited a firestorm that resulted in the language being removed from the final legislation.

So the Affordable Care Act was supposed to pay for everyone to have a session where they sat down with a doctor and discussed various possible situations they might end up in at the end of their life, and what treatment they would like in those hypothetical situations. It wasn’t a meeting for them to justify why they deserved to live; it was so that they could express their (free choice) judgement regarding what situations are worth living through.

Thanks to Sarah Palin, the idea of paying for people to go through that process died. But if you’ve read this far, perhaps you’ll consider doing it anyway.

© mathew 2017