'Better Off Dead?' Is Inconsistent
The unjustified paternalism of anti-MAID disability rights arguments
This is the first of two posts reviewing Better Off Dead?, the new anti-MAID documentary by Liz Carr.
A tenet of my approach to health ethics is that medicine always involves value judgments, and it’s patients with decision-making capacity, not healthcare providers, medical associations, religious groups, or the state who are most justified in making decisions about care.
This is partly about autonomy. Even if others might be more informed about the facts of a decision, that doesn’t give them the moral authority to make decisions on behalf of someone else. But it’s also about well-being. People value different things, so if one of those people is a patient and the other is a physician, the patient should get to decide. In healthcare, we should defer to patients about their treatment decisions, first, because of autonomy, and second, because patients are better judges of their own values.
People sometimes make irrational decisions, but a view about well-being I’m committed to—and which I’ve explored in too much depth elsewhere—is that people can’t be mistaken about their well-being for long periods of time, such that they think they’re doing badly but are actually well off or vice versa. We might revise our assessment of a period of life, such as in The Handmaid’s Tale, when the narrator looks back on her life with her partner before the theocracy began and thinks, “We thought we had such problems. How were we to know we were happy?”
Or we might learn information that changes our assessment in the other direction. If someone finds out that her spouse was cheating on her for years, she could reasonably say that, if she had known the truth, she wouldn’t have been so happy, but that doesn’t change that she was happy. (And that she didn’t know about the affair doesn’t mean there was nothing wrong with it.) This is a case where the facts matter, but, in many cases, people can agree on the empirical facts while disagreeing about what to do with them.
So much of the disability rights movement is about people with disabilities saying that society misunderstands them. Non-disabled people often believe that being in a wheelchair or blind or unable to toilet oneself would be intolerable, but the people living those lives frequently insist that society is mistaken: that their lives are valuable to them and more valuable than people believe.
There’s a striking scene in Better Off Dead?, Liz Carr’s new documentary against medical assistance in dying, which illustrates this point. Baroness Jane Campbell, a founding member of the anti-MAID group Not Dead Yet, recounts going to hospital for a routine chest infection. (Campbell has spinal muscular atrophy.) While she was unconscious, the medical team recommended a DNR order to Campbell’s husband, who initially thought this meant that Campbell’s health was failing. When he realized it wasn’t, he opposed the DNR. Campbell didn’t require resuscitation and recovered.
This is a good example of a disagreement about values. The medical team thought that resuscitation wasn’t worth it. Campbell and her husband, acting as her proxy, thought it was. The film includes many scenes of people with disabilities describing how people have made similar value judgments about them which they don’t share. Being told your life isn’t worth living when you believe your life is going well isn’t just a disagreement. It’s a form of injustice.
My view is that the patient—or her proxy—should be the one making these decisions. Whether an intervention or continuing to live is worth it is a value judgment, not a scientific one, so physicians and the state are neither well placed nor morally justified in overriding the decisions of the people whose lives they concern. I agree with Carr, Campbell, and other disability rights activists who take similar views when they say that medicine—and society generally—currently involves unjustified paternalism toward people with disabilities. As Campbell’s website says, we should create structures “which encourage disabled people from all sectors of society to take control of their lives.”
Carr and I don’t agree about everything, however. For instance, she opposes all forms of MAID, whereas I think Canada’s MAID regime doesn’t go far enough.
One point of disagreement is that, in the film, Carr and her friends emphasize how bad it is to be told they’re wrong about how they think about their lives, but Carr never addresses the people with disabilities who want to die because of their disabilities. In these cases, Carr is a paternalist, saying of anti-MAID laws, “I think the law’s about protection, even protecting us from ourselves.”
My view is that denying the claims of people with disabilities who want to die because of their disability is wrong for the same reason it’s wrong to deny the claims of people with disabilities who want to keep living. Carr seems to believe that wanting to die because of a disability is always a mistake, but being told you’re living a life worth living when you believe you would be better off dead—when you have the capacity to make these decisions—is also a form of injustice. It’s wrong to insist that someone is mistaken about how well her life is going whether she thinks it’s going better or worse than you do.
When it comes to their own lives, Carr and supporters of Better Off Dead say we should believe people with disabilities when they say their lives are worth living. But when people with disabilities say their lives aren’t worth living? That’s totally different. You must be mistaken and need protection from yourself.
Carr, Campbell, and Not Dead Yet endorse the same premises I do: it’s wrong to tell people how they should feel about their disability or what healthcare decisions are appropriate. They just apply them inconsistently.
"too much depth elsewhere" — broken link?
Technology is ambivalent. I can use a hammer to fasten a nail into a board, or to hurt someone. There's nothing essential about a hammer that prevents me from doing one or leads me to do another.
Medical technology is also ambivalent. There's nothing essential about the surgeon's scalpel that says we should only use it, say, to remove infected gallbladders and the like, and not use it to amputate the legs of someone with body integrity identity disorder. What guides our use of the scalpel - and every other piece of medical technology - is a confluence of societal judgments, professional judgments, individual (patient) values, and limits (e.g., money, logistics). If I've understood you correctly, you say that individual (patient) values should be primary among these considerations. You seem to stay within the bounds of the argument you made here: https://pubmed.ncbi.nlm.nih.gov/32611618/ by not arguing that this should be "the" goal of medicine, but are you taking a further step by saying this should be a primary consideration for clinical decision-making?
The challenges of contending with technology's ambivalence are insidious. Relying on Dan Callahan's reflections (https://pubmed.ncbi.nlm.nih.gov/14593219/), I wrote this (https://familymeetingnotes.substack.com/p/the-political-intentions-at-the-end?utm_source=publication-search):
"Daniel Callahan lamented this cost when he described liberalism’s inability to answer deep, important, unavoidable questions in bioethics like what are the proper goals and uses of medicine, what are realistic expectations for our health, what do we want to make of ourselves as human beings, and what kind of lives ought we aspire to live. As Callahan wrote, 'Liberal individualism’s greatest weakness is what is often thought its greatest strength: eschewing a public pursuit of comprehensive ways of understanding the human good and its future.' This is a problem because
'The inescapable reality of the kinds of changes that biomedical progress introduce is that they affect our collective lives, our social and educational and political institutions, as well as those tacitly shared values that push our culture one way or another. As an individual, I need to make choices about how I will respond to those changes. But more important, we have to make political and social decisions about which choices will, and will not, be good for us as a community, and about the moral principles, rules, and virtues that ought to be superintend the introduction of new technologies into the societal mainstream.'
Talk like this can make any person living in the modern West a little squeamish. Specters of dictatorship haunt these ruminations. Callahan continued:
'The greatest fear of liberal individualism is authoritarianism. But that fear, reasonable enough, fails to take account of the fact the power of technology, and the profit to be made from it, can control and manipulate us even more effectively than authoritarianism. Moral dictators can be seen and overthrown, but technological repression steals up on us, visible but with an innocent countenance, and is just about impossible to overthrow, even as we see it doing its work on us. Liberal individualism makes this scenario more easily possible, and that is why it is not a tolerable guide to the sensible use of medical knowledge and technology.'
One need only look as far as Facebook, the electronic medical record, spiraling healthcare costs, and the loneliness “epidemic” to see that merely leaving people to their own devices hasn’t yielded a society of flourishing."