Quality Adjusted Life Year (QALY) Standards of Persons with Disabilities

A while ago, I read this article (http://www.nytimes.com/2009/07/19/magazine/19healthcare-t.html?pagewanted=1&_r=4&hpw) that my friend posted on Facebook. Understandably, she was outraged by this:

Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people’s values on that too. One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar (New York Times, July 19, 2009).

In this excerpt, there is an implicit assumption that the life of a disabled person is approximately half the worth of an able-bodied person. Even if they are hypothetical figures, they’re offensive and grossly inaccurate. Having a disability of my own, I know that I am destined to have fairly expensive life-style that has to do with my Arthrogryposis, with adapted cars, showers, wheelchairs, braces, walkers, etc. that able-bodied people just don’t have to worry about. With Universal Heathcare on the table, I can understand how putting a price on someone’s life can be a very difficult task. Peter Singer, the author of the article, argues that the QALY measure should be used to objectively standardize this very task.

Admittedly, this task is immeasurably difficult to accomplish. How does one put a monetary value on extending someone else’s life? This is so difficult and subjective, to say the least. With the Universal Healthcare Debate on the table, it has become very relevant to most and very scary to some. For example, if I got a cancer – right now, at the age of 25 and physically disabled – my QALY score would be lower by default because I’ve been using a wheelchair most of my life. So, economically, extending my life another year or two would be more burdensome than extending an able-bodied woman’s life for the same amount of time, even though my physical disability has nothing to do with the cancer and does not decrease my life expectancy by default. How would political bureaucrats take that into account when making the decision  to pay for my treatment or not?

Of course, resources are limited, as they have always been. And, I agree that my life may not be as valuable to society as, let’s say, the President (ok, that’s a dramatic example, but let’s go with it), and if the government had to decide between saving my life and the President’s, I would justifiably expect them to save the leader of our country. However, when it comes to a decision between my life’s worth and the worth of another random, able-bodied, 25 year old, female graduate student’s life, I would have a much more difficult time saying my life isn’t worth as much as her’s. Our potential for positively contributing to society is approximately equal (well, I’d like to think so), but because I may require assistance with something as simple as mobility, my life is assumed to have less quality than my peers’. Personally, I find this ridiculous.

So, what can we do about this grossly inadequate measure of the worthiness of one’s life?

Well, if you want to know what I think (which, obviously, you do…), I believe wholeheartedly, that the thought processes and stereotypes about the lives of persons with disabilities needs to change within the society. The mainstream community doesn’t realize that living with a disability can, at times, contribute to a person’s quality of life in a positive way. Yes, of course it’s difficult, and of course it sucks sometimes, but it also enable’s a person to view the world from a different perspective. (No, I’m not just talking about the perspective of being an expert on belt buckles.) And, if you have been disabled for some time, you realize that coping with your own limitations is easier than it seems to the able-bodied people around you. I can live a perfectly happy, productive life as a disabled woman and my quality of life is no more or less than someone else with a similar mindset.

I call upon you, society, to ask for a new way to measure the quality of someone’s life BEFORE we pass a law that would discriminate based on disability! Even if it’s not about money, I ask you to think of me as having the potential – no, to EXPECT me – to contribute to you in a meaningful way and earn my keep, so to say.

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8 responses to “Quality Adjusted Life Year (QALY) Standards of Persons with Disabilities

  • Stephanie Akers Cohen

    Your contribution is already greater than many able-bodied but feeble minded people because you refuse to hide in the shadows that many in our society would prefer you stay in. It makes people uncomfortable to face their attitudes toward anyone who is different. Keep it up!

  • Randall A.

    Obviously the author of the article was not specifically advocating a severe QALY standard for any specific group, but rather trying to define the process and the problems for discussion.
    My current health care plan does not pay for the noted drug. Regardless of age or worth. So, either I come up with 50k, or I die.
    The current situation for most people is that some types of health care are beyond their means.
    I seriously doubt this will change with the advent of any form of public health care.
    The best one can do is to stay informed and stay involved.
    The best chance for a functional and fair health care system is a functional and fair democracy.
    Keep Talking.

  • Joanne Nagy

    This thoughtful and timely article is a valuable wake-up call at this time of making changes in health care in the United States.

    As a non-disabled older person who has survived cancer, I found the comparison between spending the money necessary to extend the life of a non-disabled and disabled person, each with cancer, a meaningful starting point.

    This article should lead to consideration of what are societies’ obligations when it comes to rationing health care. So far, ability to pay has been the only criterion. When we get a universal system, how should it be rationed – or who should be able to get what?

    This has given me much to think about and discuss.

  • Gabe

    Wow, this was a very thoughtful post. Your argument clearly articulates the dangerous slippery slope that ethicists can slide down when applying crude, utilitarian conceptions of the value of life to important questions of public policy. It’s foolish to think that any health system can exist without resource rationing, a point which Singer was trying to explore in his article. His problem, as you articulately expressed, was that he was trying to employ some bogus econometric to measure the value of life without exploring what people who are in the position of being disabled actually experience.

    Obviously not every disabled person will become a Stephan Hawking. But that fact that shouldn’t create a justification for accepting that disabled people can’t make valuable contributions to society and lead meaningful lives. Perhaps a more important point is that disabled people shouldn’t even have to make valuable contributions to society or live meaningful lives in order to justify their existence. Able bodied people don’t have to, so why should they? A society may have to spend more for medical costs to support disabled persons, but the overall per capita costs when distributed across the board are probably quite small.

    Thanks for sharing your thoughts. You should seriously consider turning this post into a full op-ed piece and submit it for publication to a national news paper or public health journal.

  • H.A.

    People seem to forget that the sum total of a human being in not entirely encased in a physical body. No one should be allowed to decided for someone else what their worth is on this earth. We need to value all intrinsic qualities in a human being–not just the walking or talking.

  • Tobi Dragert

    We “able bodied” do definitely not give much thought to those with any kind of special needs and challenges. It is a sad commentary.

    What’s more sad is that everything seems to be discussed (politically) on one basis: Money. Yet of course when it comes to invading a soverign country and occupy it, there always seems to be billions of dollars. Our values, I really fear, are so skewed, I’m not sure we can ever bring them back to sanity. Imagine if we were the leader in peace throughout the globe. If we, the richest country on earth, provided for all of our citizens – which could be done, without the pentagon budget. Imagine if we had healthy, educated citizens and were really setting an example other countries would admire and follow, rather than hate and set out to destroy. I think it’s possible. But not until we turn back to true human values. I hope the younger generation can help accomplish this!

    Meantime, Adrianne’s posting shows the higher nature human beings are capable of. I still have faith it’s there, even in the most hate-filled right-wing speech. We must find a way to turn that off. Very best to you, Adrianne — I am a friend and admirer of your wonderful grandparents.

  • jane griffin

    Many years ago most people with significant disabilities were rarely seen in public. Handicap access was unheard of and little, if any, assistance was ever given. Franklin Roosevelt took great pains to conceal his polio limitations from the public. But in recent years many disabled people have shown the rest of us that their lives can be as fulfulling as they are willing and able to make it. We see people with physical and mental limitations in all areas of life–doctors, teachers, artists, athletes,entertainers, etc, etc. And no one can or should be in a possition to decide whose life is more valuable to society.

    Now comes the problem of providing universal health care to all, and the means of paying for it. Yes, money has been the primary means by which people have gotten health care. (Not exclusively, however. As we know that a severely injured person will get the emergency care needed. And I’ve seen reports of community clinics totally staffed by volunteers.) But without a willingness of people to provide health care free of charge, this must be paid for. The inclination by many people to make value judgements on the intrinsic worth of another person is a reality, but one we should strinuously resist. We have limited resources and should provide the best care available based on the medical needs of the patient. Most of us might agree, however, that an old, sickly person should not be given priority over a young, healthier one.

    I believe in the value of ALL human life, from the pre-born to the death bed elderly, and am counting on those who must make health care decisions to use good, ethical judgement–one not based on race, color, creed, or disability status–in doing so.

  • Linda Levine

    Thoughtful, provocative and should be mandatory reading for all of us who think that the most major problems in life involve parking spots, traffic, running out of milk at the last minute. All of those events and experiences that wake us up to the real world are valuable, and this certainly fits the description of a real and vital wake up call. Linda

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