What’s Wrong with Advanced Directives

Do you want to cut health care costs in America?  It’s simple – you could save substantial money by doing one thing. You encourage people to create advance directives for what they would like to happen if they are unable to speak for themselves in the hospital.

For instance, someone might say they don’t want CPR, don’t want a ventilator, don’t want procedures that are painful and only prolong life by months, don’t want procedures that would save their life but leave them disabled.

In fact, they do. They say exactly these things when asked – at least a lot of people do. People want to “die with dignity.”

Here’s where I have the problem: If the decisions are made with informed consent and out of personal desire, I’m generally fine with this. But I don’t think most of these decisions are made with consent.

I was recently listening to a Planet Money podcast on this – listen to the actual story, as this isn’t in the article, if you want to hear what I’m concerned about.  Basically, this town has a remarkably high number of people who have completed advance directives, something I agree most people should do, but do carefully.

The problem comes with two things. First, as the show points out, this saves money, by not keeping people alive with expensive procedures who indicated they don’t want to stay alive in those situations. This can be ethically neutral, unless the person thinks, “I want to leave my life savings to my kids, so I don’t want the hospital using all of my money on me. In other words, I worry about people making a financial decision on whether they should live, and I have a huge objection to someone dying who might want to live on the basis of finances. Directives in favor of discontinuing care are scary when there is finances involved. This certainly could be solved through funding healthcare properly, so that it’s not a concern. In other words my heirs shouldn’t have less money because I told the doctors to do everything they can for me.

The second problem was when one man in the story was asked about situations and his choice – situations like whether he would want to have life saving surgery that would leave him blind or leave him unable to walk. In both cases, the man, likely sincerely, said, “No, I don’t want those surgeries.” Now, this is hypothetical and this probably wasn’t a real possibility for the man, but it is scary. What was he basing this decision on? I don’t know what he does and doesn’t know about disability, but if he’s like most people in the USA, disability is terrifying to him – there is probably few things worse than being “confined to a wheelchair” or being blind. To people with those disabilities, these disabilities need to keep anyone from leading a full and exciting life that they enjoy. But chances are he doesn’t know many people in a wheelchair or blind. Even more concerning was that the question wasn’t, “You’re going to die shortly and be blind if this surgery happens, and probably be in a lot of pain. Do you want to die painlessly in that situation?” That’s probably the question the guy thought he was answering (that said, I could be wrong, and hope I am).  He answered that he didn’t want those surgeries – even if he would live another 60 years without any other problem from the surgery) – because the question just asked if he wanted these types of procedures that could leave him with a disability for the sake of curing illness. In other words, this wasn’t exactly an end of life question, even though he probably thought it was.

And that’s where I have the problem. I don’t like people making decisions about their death on the basis of biases against disability. I hate it for a bunch of reasons. I hate it because I wonder whether or not this man would make this decision if his wife was disabled and he knew better what disability is like. Or if he was presented this information in another way. Equally, I’m scared about how disabled people are viewed by him, and if these prejudices are shared by other people – like people in hospitals. Do they see a disabled person and do a calculation, “This person is suffering more and would probably prefer death?” There’s evidence that this does happen. Routinely.

I do think people should fill out advance directives and let their families know what they want for medical treatment, if they are unable to speak. I believe very fully in this. But only with consent and without the financial motivation to choose death.
I have a good life. So do my blind friends, my wheelchair using friends, and, indeed, “even” my friends with chronic pain. Learn about us before you decide a life like ours isn’t worth living.

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2 Responses to What’s Wrong with Advanced Directives

  1. Ben Edwards says:

    Very great post. A great insight into the look at the view of the quality of life for people with disabilities and their inherent consequences. It explains to me quite clearly the ways in which common beliefs of everyday people are in fact connected to many tragedies around the world, which unfortunately manifested to extreme tragedies in the case of societies such as Nazi Germany.

  2. dennis says:

    Of course, having such a ‘line of thinking’ present sets the stage for 1) the notion of compulsory advance directives, where one’s financial (or other, darker matters) limits the choices one has; and 2) darker still, ‘lesser beings’ are murdered upon receipt (to the joy of their social-darwinistic betters) and their ‘advance directives’ are ***falsified*** as per the whim of administration.

    If the latter seems a bit far-fetched, look up ‘Aktion T-4’. It HAS been done before.