The NHS in the UK uses a committee of bioethicists and others to advise it about ethical policies, known as the National Institute for Health and Clinical Excellence, a.k.a., NICE. Well NICE isn’t. In my view, it is dominated by utilitarian ideology that denies the intrinsic value of human life, determining policies for the application or denial of medical interventions based on explicit “quality of life” criteria.
Such advise is often based, not on whether a patient could survive, but on measurements known as the “quality adjusted life year,” or QALY. A QALY combines quality of life, life expectancy, and cost considerations into one figure, on the assumption that an individual may prefer a shorter but healthier life to a longer life with diminished health. Here is a good description of how the system works from an article in Clinical Ethics about NHS and Alzheimer’s patients (subscription needed), demonstrating that its purpose is rationing based on quality of life determinations:
The calculation assigns a numerical value for quality of life to a condition on a scale of 0 (death) to 1 (perfect health) (negative being a state worse than death) using a matrix. Predicted change in quality of life is established from clinical evidence and converted to a numerical value using the matrix. A formula then combines the predicted change, duration of treatment effect and cost. The result is a figure expressed in Quality-Adjusted Life Years…
The QALY can be applied in two main contexts:
1. In comparing merits of one treatment to an identified patient (or which of several to give for a particular condition).
2. In deciding which treatments should be allocated at all, and to which patient groups.
NICE employs the QALY in the second context. This is significant as, where the choice is made between different patients, issues of bias or discrimination become important.
The problem is, under the NHS, the imposition of QALYs make people “prefer” that approach by limiting treatment options based on this explicitly discriminatory (against people with disabilities, the aged, etc.) approach, as noted by the article:
In March 2005 NICE released draft guidance on the treatment of Alzheimer’s disease, proposing that drug treatments [drug names omitted] should no longer be recommended for NHS funding due to lack of cost-effectiveness [based on QALY analysis]. This followed 2001 guidance stating that the drugs were clinically effective, and was met with anger from various ethicists, charities and clinicians…It concluded that the benefits provided by the treatment were not sufficient to make the drugs cost effective for use in the NHS.
This is where Futile Care Theory leads. Once the principle is accepted that health can be rationed based on judgments of a patient’s quality of life, it eventually expands into refusing efficacious treatments for whole categories of people. And those most likely to be deemed to have less right to care are going to be the ones with the least political power.
We have to get a handle on resource issues, to be sure. But discrimination based on quality of life is not the way to go. The NHS’s use of NICE is a warning to us here in the USA. We walk down the quality of life path at the peril of our most weak and vulnerable patients.