Mining your past to justify your terminal care: the idea of a ‘retrospective QALY’

There is no end to human suffering. There is a distinct end to the amount of money that governments will spend on reducing it. Someone has to make decisions about healthcare resource allocation. I am very glad it’s not me.

Many tools are used in the decision-making process. Not many emerge well from a viva with a philosopher.

Individual clinicians use intuition, experience, NICE
guidelines, the fear of hospital accountants and, no doubt, prejudice and the
tossed coin. But policy makers do not have the luxury of being able to account
only to their consciences and the local man in a suit. They have to say something in the minutes about the
reason for funding procedure X but not procedure Y. The real reason might be:
‘My grandma, whom I loved very much, had procedure X, and it did her good’, but
they can’t say that.

Enter the QALY – the Quality Adjusted Life Year.
This gives a language for justifying decisions that may well have other, more
intuitive justifications. It may even, sometimes, lift an agonising decision
from the shoulders of a policy-maker who is genuinely wavering between two
alternatives. The idea is that if there’s a competition for funding between
procedures X and Y, you calculate how many years of life each procedure will
give you, and then adjust for the quality of those years. It is a crude device,
both philosophically and methodologically. Philosophically it’s made of
un-nuanced utilitarianism. So far as method is concerned, there’s sometimes
some evidence-based actuarial sophistication behind the calculation of the
number of years purchased, but precious little behind the adjustment for
quality of life. That adjustment will always be subjective, and may be
violently controversial. While a patient with locked-in syndrome might
uncontroversially be said to have a massively truncated quality of life, can
the same be said for deafness or impotence?

This isn’t to knock QALYs. They represent a laudable
attempt to flush the caprice out of healthcare funding decisions, and it is
hard to think of a better – or less obviously unsatisfactory –  alternative. I know: I have tried and

Which is why I was excited to see Christopher
Cowley’s article Justifying terminal care by ‘retrospective quality adjusted
life years
: Journal of Medical Ethics 2010: 36; 290-292. The background is this. QALYs don’t really do
terminal care. Terminal care doesn’t buy many life years at all, and so while it
might make life less wretched, it will always remain entirely unseen  by the healthcare resource prioritisers if they
see the medical world only through the QALY lens.

Cowley, however, thinks that QALYs can be
recalibrated to assess the value of terminal care. It requires quite a bit of
adjustment, though. ‘Quality’ has to be redefined to mean meaningfulness rather
than physical comfort, and the relevant years of ‘life’ have to be understood as
not just the years of life to which the patient can look forward (none in this
context), but also those years that are added by the reflection and
re-evaluation of past years enabled by good terminal care.

By meaningfulness, Cowley means an Aristotelian
flourishing which is more than mere happiness. Comment: This is a far more
satisfactory index of what it’s worth hanging on to than the more conventional
measures of the quality of life, but it’s even harder to weigh it for the
purposes of a QALY-type equation.

But let’s suppose that it is possible to measure
meaningfulness. What about the number of years? Kierkegaard famously observed
that life is led forwards, but understood backwards. Cowley agrees, and suggests
that we don’t really appropriate our
lives until we assess them. He’s too tactically canny to say it, but it’s really
a variation of the Socratic maxim that the unexamined life is a life not worth
living. Dying can be a particularly fecund time, if it’s properly managed. One
of the products can be re-evaluation, which can result in the patient noticing
new things about himself – mining the past for previously unspotted
perspectives and understandings. The newly mined novelties, argues Cowley, constitute new life. And if you’ve
generated new life, why not try to quantify the amount of new life you’ve
generated, and squeeze it into the framework of a QALY?

Cowley doesn’t suggest how this quantification might
be attempted. He is wise, because of course it can’t be done. Whatever criticisms
can be levelled at the quantification of life-years in an ordinary QALY could
be levelled far more destructively against any attempt to count Cowley’s
retrospective years.

A QALY has only one real merit. It gives you a figure.
A flawed, pretty hopeless figure, contaminated by all the subjectivity it
embodies, but still a figure. If that’s a virtue, QALYs are, to that extent, a
Good Thing. Cowley’s retrospective QALY, generated as it must be by some airy
metaphysical calculus, can’t really give you anything approaching a figure. And
an unquantified QALY isn’t a QALY at all. It’s like a black coat made of white
silk, or a poker made of ice cream.

It may be that Cowley framed his argument in terms
of QALYs as a rhetorical device. If so, it was effective. It will ensure that
his (superb) paper is widely read. It deserves to be. But there are dangers in
his method. His logic suggests that the people who have lived lives of
relentless self-examination (Oxford philosophers, for instance), and therefore
have nothing left to discover by the time they are on their deathbeds, should
be last in the queue for proper palliative care, well behind those who have
spent their lives watching Big Brother. While this argument is intuitively very
attractive, and would no doubt command massive popular support, surely some
respondent can think of a reason why it is flawed.

He also implies that someone who remains steadfastly
unreflective in the face of his malignancy might have less of a claim on the
terminal care budget than an obsessive navel-gazer. Really? Where does that
thought take us?

But Cowley’s paper is a salutary, powerful and often
lyrical reminder of some important truths. He sets out very eloquently many of
the reasons why terminal care is important. They can’t be expressed in the
language of QALYs – either conventional QALYs or his own version. But that
doesn’t begin to mean that they are not potent and compelling.

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One Response to Mining your past to justify your terminal care: the idea of a ‘retrospective QALY’

  • ralbin says:

    Not sure that this paper is the contribution you assert it is. First of all, I’m not sure that terminal care is as difficult to justify as implied. The question is compared to what? Compared to say, childhood vaccination, its a loser. But what about compared to receiving no terminal care? Isn’t this the more appropriate comparator? Life span will be either the same under both regimes and might even be shorter with some terminal care choices, but the quality component may well be higher with terminal care, potentially counterbalancing any effect on life span. An example would be palliative radiation therapy for a painful malignancy. In quite a few clinical situations, the effect on life span will be negligable buth the relief of pain or other troublesome symptoms may be quite substantial.

    I’m also not sure that this article’s emphasis on reflection really adds a great deal. My understanding is that QALY assessments are based on preference surveys. People’s preferences are based on numerous factors, including but not limited to the type of physical problems discussed above and in the article. Surely, things like a chance to reflect on your life are considered by individuals in stating their preferences related to medical interventions.

    The admittedly vague concept of quality of life incorporates a lot of things, including the type of phenomena discussed in this article.


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