Saturday, July 18, 2009

Being a Wally about QALYs

In which I take on another person far cleverer than I am! Of course, I don't really think that Peter Singer is a wally, but it rhymes so what can I do?

For a couple of months, I've toyed with writing a blog about how the NHS works for the benefit of American readers, who seem to be getting a lot of misinformation now that socialised healthcare has become a real prospect for them. I've seen lots of nonsense from American sources about how the NHS is rubbish and us Brits are unhappy with it. We're not! Sure, there are flaws in the NHS and we moan about it. But we also moan about the education system – nobody actually thinks that only kids whose parents can pay should go to school and the rest of them should be sent up chimneys.

This week's nonsense comes from an Australian. In a now vanished article in the New York Times (hat tip to Wheelie Catholic), Peter Singer explains the necessity for healthcare rationing.

As he says, all healthcare is rationed. The healthcare of my American friends is far more rationed than mine because the treatments they can receive is based on their personal resources. What treatment I receive is based on national resources. There's nothing scary about this “rationing”. The main result of this in the UK is an ongoing controversy about what should and should not be paid for. Under what circumstances should the NHS pay for cosmetic procedures, gender realignment, fertility treatment? Should people receive free treatment for the effects of their lifestyle choices?

Recently, as Singer describes, there has been controversy over some extremely expensive drugs for the treatment of cancer which the NHS – or more specifically NICE, the body that makes such decisions and recommendations – decided were not cost-effective. But it is rare that the controversies arrive from this direction. Usually we argue about the way the money is already being spent (basically, we gripe about the services which we personally won't use – I don't know why they spend money on testicular cancer when people bring it on themselves by carrying about such a ridiculous organ in the first place!).

So Peter Singer explains QALYs. Not terribly well. The QALY is a Quality Adjusted Life Year, which is to say, a unit with which to measure the outcome of a particular treatment. Singer gives the example of quadraplegia and speculates, quite reasonably, that most people might regard years without quadraplegia as being worth more than years with it:
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.
This is a really poor example for reasons I'll come back to. First let me have a go with a more likely example:

Say there is a cancer drug called Vomitto 63. This drug gives the average cancer patient two more years of life, but causes them to vomit several times a day, every day. So a person has this extra time but their quality of life is significantly impaired. So if we adjust the time it would buy you according to the quality of that time, we might decide that the benefit of Vomitto 63 provided was worth just one year, one QALY. The government body, NICE, have an approximate monetary value on a QALY (up to £30,000) with which they compare cost of treatment. If a course of Vomitto 63 costs £40K, the drug won't be worth funding even if it extends life*.

This does not result in discrimination against disabled people.

The reason it doesn't, is because QALYs are only used in the abstract, when looking at whether a drug, a surgical procedure or whatever else should be funded for anyone. If you have quadraplegia, to use Singer's example, and you have a life-threatening heart condition, you will be given the same treatment as a non-disabled person**. The only time that a quadraplegic (or any disabled person) would get differential treatment is if their life became less viable than someone else's. So for example, in the very unlikely event that two people had pneumonia and they only had antibiotics for one person, they would choose which person was most likely to recover which may or may not relate to impairment, age, weight or whatever else (this would certainly be the case if we had a serious flu pandemic where resources were stretched).

The issue of viability usually arises in the absence of any competing needs. Take cancer in old age. If you are 95 years old and develop cancer, then you are unlikely to be operated on. Not because you're old, you're going to die soon anyway and you're not worth the money. But because you'd be fairly likely to die during a serious operation and if you made it through, you'd be fairly likely to die in the aftermath. Such treatment would be unlikely to do you any good. Very often, the more economic solution is the most ethical, saving the patient from the ordeal of an ineffective treatment.

Point is, it is not as if you go to the doctor and she sits back, strokes her beard and says, “Well, we could give you this life-saving drug, but I notice you've got a limp and a missing eye, so let me just calculate what we think your quality of life is worth.” The quality in the QALY is usually either about side-effects or the short-comings of a given treatment – it is never applied to an individual patient. When an individual patient's situation is novel enough to warrant discussion, the case is discussed by doctors and Ethics Committees and the like, not by someone with a checklist and a calculator.

But apart from his misrepresentation of the system, Singer's argument is inconsistent. Something I have always admired Singer for is that he works with an extremely simple version utilitarianism about which he has appeared to be consistent. Singer argues that we can determined what is right according to what maximises the amount of pleasure and minimises the amount of suffering for the largest possible group. This leads him to vegetarianism, since our pleasure in eating meat could not be compared to the suffering of non-human animals that are killed for meat. It also makes him a passionate anti-poverty campaigner because clearly, there is an enormous amount of suffering in the world which could be relieved through a relatively small sacrifice on the part of those of us who have money to spare.

Perhaps most controversially, he has argued that because a chimpanzee may have more capacity for pleasure and pain than a human being with very severe impairments, some non-human primates' needs should be considered as more important than some disabled human beings.

Although there's a lot wrong with this latter argument in particular, his arguments have been at least consistent with each other. They just start from a ropey set of premises.

However, never before have I seen him suggest that such matters are decided by consensus. Clearly, if you ask most people, non-human animals don't count nearly so much as humans – most of the world's population are happy to eat non-human animals on a regular basis. So surely if you ask most people how they would value their life if they were quadraplegic, their answer would be similarly unsound? Singer anticipates this point;
Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.

This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. hat implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition.
And here's the trouble. Some people with impairments experience far more suffering (for complex social and psychological reasons) than other people with the same impairments. Some quadraplegics, having come to terms with their injury, might consider their life equivalent to what it was without it and not be terribly interested in a cure, preferring to campaign for social change as a more realistic way of improving their lives. If as Singer implies, healthcare provision was rationed according to the qualiy of life of every individual then different quadraplegics would receive different treatments.

For one group, the health service would work on curing their quadraplegia but not going all out to save their lives, since those lives weren't terribly good quality ones. For the other group, the health service wouldn't worry about a cure (which doesn't yet exist, after all) but they would make every effort to preserve these lives, since they were still being thoroughly enjoyed.

And you could apply the same thing to everyone, according to their happiness or unhappiness. According to Singer's logic, the lives of happy people would be more important than unhappy people. And if it is ridiculous to measure this individually (as it is), then I don't see why disability should be the only differential. Surely most of us would agree that someone living in poverty has a lower quality of life than someone who is wealthy? In which case, any national health service should prioritise wealthier patients who are likely to benefit more from continued life and relieved suffering than someone who has no money at all. If anyone argues that poor life is as worthwhile as a wealthy life, why would we attempt to alleviate poverty?

In a wealthy country like the UK rationing on healthcare impacts on very few of us. There are flaws in the system, never in my personal or observational experience, have I known people to be denied the treatment they needed because of decisions about cost-effectiveness. Whilst there are some very tricky decisions to be made, I don't think it is reasonable to assert that different lives are weighed up against one another. Socialised healthcare is not in the least inconsistent with the idea that all lives have equal value.

Since I started writing this, Imfunnytoo and Pizza Diavola have written excellent posts in response to the same article.

* The monetary value of a QALY is a subject of ongoing debate. Research suggests that the British public think it should be about twice what it is, but whether or not we'd be prepared to foot the bill through taxation is another matter.

** Of course, disability discrimination does exist within the NHS, as does sexism, racism and homophobia, but that is for the most part about prejudice among healthcare workers, not the way the thing are set up. The greatest institutional problem as far as disablism is concerned is the chronic underfunding of mental healthcare.


One Sick Mother said...

Well-written and thought-provoking piece.


Anonymous said...

My experience in Canada, where we have public health care with essentially no private option is that people with disabilities are in fact discriminated against.

In fact, a health policy strategist spoke directly to the issues in a healthcare conference recently. She listed many of the inputs that went into the development of the priority setting strategies and one of them was "values". I asked her "whose values?" and she responded, "the values of the majority of the public."

I don't see the government any polls on values so I take this to mean that the strategies are formed based on the values of the people who create policies.

In a later, private discussion, this doctor shared with me that "infants with Down syndrome get the gold treatment.....for now."

In Canada, the vulnerable have essentially no legal protection. There is no ombudsman who oversees hospitals or any kind of disability protection program. The value of the life of a person is dependent on their income. Therefore, cases in which someone had died because the doctor arbitrarily thought their life to be of little value, are not likely to ever get to court such that they might raise awareness or affect policies.

The other thing in Canada, is that we do not publicly admit to rationing. Everyone believes that when it comes to medical care and surgery etc, everyone will get the treatment that is optimal for them. I suppose the first government official that raises the topic of rationing in public would ensure that his/her party would not likely be voted back in.

Covert rationing is the worst thing possible because it allows for discrimination against disability. We do not know what the basis of rationing is. An intensive care doctor told me recently that her intensive care has created guidelines that restrict admission for children with certain cognitive delays. I know many parents that want to know if their child is on the "out" list so that they might have the option of whisking them to the US at their own expense if they are critically unwell.

I think a bottom line assessment on whether rationing really is occurring might be to compare rates of people living with certain conditions or their longevity. For example, what percentage of children born with Down syndrome have cardiac surgery in the UK vs America? What percentage of children with tracheostomies have cognitive delays?

The results might tell the real truths.

The Goldfish said...

Thank you both!

Anonymous, I don't know about Canada, but I understand from blogs I read that your system leaves a lot to be desired. Particularly from reading the experiences of Elizabeth who has a complex terminal illness and has been passed from pillar to post in the last few years, as if doctors don't want this difficult case (that is difficult medically) on their books.

Clearly, it is better to have the option to pay for medical care if the alternative is being refused it on the grounds of impairment. And you're dead right about covert rationing; not only is this morally wrong, and leaves the powers that be unaccountable, I'm sure it also creates a tremendous amount of anxiety and mistrust between patients and healthcare professionals.

However, given that private healthcare discriminates against anyone who can't afford to pay - and lots of disabled people can't afford to pay - there have to be ways of making socialised healthcare work without discrimination.

Like I say, the NHS is an imperfect system and there are instances of gross discrimination within it, but as a person of very little economic value (if not a negative value) to my country, I am confident that this has little bearing on the medical treatment I receive.

I will however look into what you suggest, and see if there is any way of making a reasonable comparison. Don't hold your breath, but I shall have a dig around.

Lindsay said...

Thanks for this post, Goldfish.

I'm also really conflicted about Singer; I like much of what he says, and also like his pretty-consistent-overall adherence to the idea that all living things are entitled to the greatest possible level of happiness --- like, say, trading off humans' ability to eat meat whenever they want it for animals' right not to be kept in horrible factory-farm conditions for their whole lives and then killed --- and I also quite like his idea of the "expanding circle" of moral personhood.

Where I think he is inconsistent is where he proposes, instead of widening the circle of "people" who have rights, and, say, can't be experimented on willy-nilly, he proposes another tradeoff, based on intellectual ability. That's not expanding the circle, that's repositioning it.

You're a philosopher, Pete; why not consider a slightly more radical solution?

Anyway, Peter Singer aside, I also appreciate anything I read by British, French, Canadian or other people whose countries already have socialized medicine. I hear all sorts of conflicting things, and though there is no doubt in my mind that fairer systems of rationing care exist, it's nice to see that y'all aren't living in some Kafkaesque nightmare system over there.

(Weirdly, certain American commentators seem only to fear bureaucratic entanglement when it's the government's bureaucracy; private companies can be as tricky as they like and somehow that's not as nefarious.)

seahorse said...

I believe i encountered covert rationing whilst waiting for my NHS wheelchair. My solicitor noticed that they stated it would be x weeks until assessement, and then y weeks until delivery. In both cases the time period far exceeded the time stated. My solicitor believes that I was 'shoved down the list' in both instances due to my condition not being 'important' enough, and that had we not taken action, I would never have got my wheelchair at all.

seahorse said...

Mind you, thinking about it, that's as much down to ignorance about my condition as cost. I don't know if they felt allowing me a wheelchair from their severely cut back budget would compromise everyone on the list generally, or whether they compared my need with others. All I know is that my need was ignored.