Thursday, July 23, 2009

Is life with disability half as good as life without?

Every time I see an article written by bioethicist Peter Singer, my chest gets a knot in it.

Last weekend, his piece Why we must ration health care appeared in the New York Times Magazine, along with this description: A utilitarian philosopher's argument for placing a dollar value on human life.

The article is about why health care, as a finite resource, needs to be rationed in the U.S. It's about setting limits on what we're prepared to spend to save a human life or to reduce pain, so we get value for our money. Okay, that I get.

In order to compare treatments, we need a common unit to measure their benefits and Singer uses the “quality-adjusted life year (QALY).”

The QALY is a composite of the number of years saved by a procedure or drug (for example, saving the life of a teenager is equivalent to saving the lives of 14 85-year-olds, he says, because a teenager could live for 70 more years vs. the 85-year-old living for five) and the quality of those extra years. The idea, according to Pinning down the money value of a person's life, is that “a year in perfect health is worth more – both to the patient and to society – than a year spent in pain, depression or a wheelchair.”

Singer doesn’t clearly define what he means by quality of life, but implies it is synonymous with "an active life," and is diminished by medical conditions that limit function.

In order to compare how we might allocate resources, Singer suggests we consider how “most people” would rate life with a severe disability like quadriplegia, with life without. Would the average person have a hard time deciding whether they’d prefer five years of able-bodied life or 10 years with paralysis? If so, he says, what they're really saying is that life with quadriplegia is half as good as nondisabled life.

In this scenario, the QALY would rate a procedure that saves the lives of nondisabled people at twice the value of one that extends, for the same time, the lives of quadriplegics.

Looked at in a different way, the value of saving one able-bodied life would be equal to restoring function in two people with quadriplegia.

I have problems with this on two fronts.

First, the premise that reduced physical ability always translates into a less satisfying or happy life flies in the face of facts. A number of studies show that people with quadriplegia rate their quality of life as average or above average, and that they value their lives highly.

This is consistent with research in the world of child disability. For example, a 2007 study of 500 European children with cerebral palsy published in The Lancet found that eight-to-12-year-olds rated their quality of life no differently than children without disabilities. A similar 2007 study of 200 Canadian teenagers with cerebral palsy found participants' self-reported quality of life was not linked to their abilities or degree of disability.

“Is it surprising that subjective quality of life of children with cerebral palsy is similar to that of the general population?” The Lancet researchers asked. “Possibly, from the perspective of a non-disabled adult imagining what it would be like to be disabled, but probably not from the perspective of a child whose sense of self from birth incorporates their impairment and who embraces growth, development and living with the same excitement as most children.”

This leads to my second problem. Instead of relying on science to measure real quality of life, the QALY comes up with a score based on surveys of how "most people" predict they'd experience quadriplegia – without having lived it.

We know from recent "happiness" research that people are notoriously bad at predicting what will make them happy. In Stumbling on Happiness, Harvard psychologist Daniel Gilbert describes common blind spots in how we imagine the future. These include a lack of empathy that would allow us to imagine an experience different than our own and a tendency to overestimate the negative impact of an event and underestimate our resilience. This helps explain a study that showed sighted people will pay more to avoid going blind than blind people will pay to regain their sight. It also explains why most people assume they couldn’t be paralyzed and happy, even though surveys of people with quadriplegia show the opposite.

If someone had told me before my son was born that he would never speak, I would have assumed this was incompatible with a good life. Speaking is one of my great loves. “My son can’t handle it,” I would have thought, and, perhaps, more tellingly, “I can’t handle it.”

Imagine my surprise the first time I sat in a room with people who communicated effortlessly and richly with only their hands. There was great beauty in that silence, beauty I never would have experienced if I'd remained trapped in my narrow mindset. And because – before he learned sign language – I was forced to look deep into my son’s eyes to read what he was thinking, I discovered how much I missed in my old life, when I had to stuff every silence with words, because I was too afraid of what I'd find if I didn’t. Disability can stretch us.

Gilbert, in Stumbling on Happiness, shows that people are remarkably good at making the best of bad situations – by changing their views of the world in order to feel better about the world they find themselves in.

But for some reason we lack this insight into ourselves, he says, and don’t factor it into our predictions: we don’t believe we can adapt to something life-changing.

Given that many people with disabilities rate their quality of life highly, and given what science tells us about the mistakes we make when trying to imagine what will make us happy, why would we rely on the uninformed judgments of the average person to assess the value of a disabled person’s life?

And even if a happy life was determined solely by physical ability, does that mean the value or worth of a person’s life is diminished?

Should twice as many medical dollars be expended to save the life of an elite athlete over that of a couch potato?

What about a child with above-average physical function but a developmental disability?

Does reduced cognitive function lessen the value of a person’s life in Singer’s model?

If we asked “most people” whether living with a low IQ was as “good” as life with average intelligence, what would they say?

I bet “most people” haven’t had a close relationship with someone with a developmental disability – so they wouldn’t have direct experience to go on. Instead, they’d fall back on popular stereotypes. Singer himself equates human dignity with intellectual capacity in A convenient truth, an earlier article in the Times about the Ashley treatment. “... I find 3-month-old babies adorable, but not dignified. Nor do I believe that getting bigger and older, while remaining at the same mental level, would do anything to change that.”

Does this mean we should put fewer dollars into life-saving treatment for people with developmental disabilities?

People with disabilities face so many misconceptions about their experience. The QALY measure only perpetuates them by relying on a simplistic measure of “perfect” health. Being paralyzed or using a wheelchair doesn’t preclude being healthy or living a full life.

Physical function may contribute to a good life, but it’s only one of a myriad of factors. What about social conditions that can marginalize people? Perhaps Singer would like to survey people on whether they'd prefer to live five years white or 10 years black in the U.S.; five years rich or 10 years poor; five years as a man or 10 years as a woman.

Can a person's value be determined by race, income or gender, anymore than it can be determined by physical ability?

The QALY keeps things clean and simple and easy to calculate for economists by reducing quality of life to physical function – at the expense of people with disabilities.

I think Singer’s recipe for health-care rationing has sinister implications.

Reactions:

6 comments:

Fantastic post. I too cringe every time I see Singer's name on a disability-related article. And I work in academia so I'm used to dispassionate arguments. I'm just not convinced that's where he's coming from. I look forward to reading Stumbling on Happiness. The book that opened my eyes about 10 years ago to bigger issues on disability was Life As We Know It by Michael Bérubé, written about life with his then-5-year-old son with Down syndrome. They are now working on a sequel together.

I think Mr Singer is looking for a job in the medical insurance field in the US since he is easily able to assign a dollar figure to human life. Without a clear-cut definition of "quality of life", his argument is moot. Furthermore quality of life is subjective and therefore would be next to impossible to quantify accurately.
As an individual with health issues and as a parent to a 15 year old with multiple disabilities, I resent Mr Singer's able-bodied arrogance. He can choose for himself if he would live or die in any situation but he doesn't have the right to decide the value of my life or the value of my family's life.

I absoloutely agree with your thoughts on this and health care rationing is definately a slippery slope. Unfortunately I see this type of scenario even in the school system.

Funding and services for early intervention is far more generous than if they still require assistance once they have exceeded those crucial early years. It almost seems as though the thought process for this is these kids (mine is mentally handicapped so that is the disability I am talking about) aren't going to be able to 'get better' or what they have can't be 'fixed' so all of a sudden funding drops and then so do services. Kids with disabilities that aren't going to be able to grow into succesful adults with high paying jobs aren't valued the same as kids or adults that can. My son will always need care, however his worth is in other areas. He has unconditional love for everyone and says 'Hi' and gives a big smile to everyone he comes across. There are probably countless people out there that their day was made better by that simple gesture. How can anyone put a price on that??

Hi Clare: I am playing catch up with comments. Thank you so much for posting! Stumbling on Happiness is an interesting read. I'm familiar with Life As We Know It (and have read Bérubé's pieces in magazines/papers), but I haven't actually read the book. I plan to. And I'm very excited to hear about the sequel written with his son. Father and son might make great guest bloggers for the BLOOM blog at some point.

Thanks again for writing and hope to hear from you again, Louise

Hi Sarah: Thanks so much for writing. I agree with this comment of yours:

"Kids with disabilities that aren't going to be able to grow into succesful adults with high paying jobs aren't valued the same as kids or adults that can. My son will always need care, however his worth is in other areas."

Our children's worth and what they contribute can't be measured in our culture's narrow way of defining success.

Thank you for writing about your son's priceless attitude and the impact it has on others. We need to speak more about how gifted our children are, each in their own way.

I hope to hear more about your son! Thanks for writing, Louise

Dear MBrown:

Thank you for your eloquent response! Hope we hear more about your teenager.

Thanks again, Louise