JFS Special: A life worth living. A life worth saving.
When is a human life not worth saving? When healthcare resources are limited, who gets life saving drugs and medical care, and who should go without — and who decides? Should care be denied to those whose health problems are believed to be their own fault, who are too old or too fat, or whose quality of life is not worth the price of saving?
Today, the National Institute for Health and Clinical Excellence (NICE) released its Social Value Judgements, outlining its guiding principles in deciding the allocation of National Health Services resources. The entire world should care about what this disturbing document forewarns. It is the most palpable document in recent history to bring the same bioethical dilemmas, on the moral claim of personhood and quality of life versus the interests of the state, that were raised in the 1920s.
Before we look at the actual document, its release has been met with a flurry of news coverage in the UK, as consumers and healthcare professionals debate the rationing of healthcare and the future of their healthcare system. A few samples:
The National Institute for Health and Clinical Guidelines (Nice) has ruled for the first time that saving a life cannot be justified at any cost, in a review of its ethical guidelines... Nice is facing growing criticism over the number of drugs it is now rejecting which are available throughout Europe and in America. Last week, it refused to sanction four kidney cancer drugs which can double life expectancy.
It has now rejected the so-called "rule of rescue" which stipulates that people facing death should be treated regardless of the costs. The rule is based on the natural impulse to aid individuals in trouble. In a report on "social values judgement" the regulator says: "There is a powerful human impulse, known as the 'rule of rescue', to attempt to help an identifiable person whose life is in danger, no matter how much it costs. When there are limited resources for healthcare, applying the 'rule of rescue' may mean that other people will not be able to have the care or treatment they need...
The ruling contradicts the advice of Nice's Citizens Council, which said that a rule of rescue was an essential mark of a humane society. The report said that where individuals are in "desperate and exceptional circumstances" they should sometimes receive greater help than can be justified by a "purely utilitarian approach"...
... Social Value Judgements, includes advice on the treatment of smokers, drinkers and the obese and rejects arguments that people whose illnesses are self-inflicted should get less or no treatment. However it does say treatment may be withheld where behaviour reduces the chances of success, unless patients agree to change - therefore an alcoholic who refuses to quit drinking could be denied a liver transplant. Such a philosophy could also suggest that treatment may also be refused to elderly patients if the benefits are deemed too low or the risks too high... many are calling for a debate on healthcare rationing but the British government appears to be reluctant to engage in a public debate about the issue.
Does the National Institute for Clinical Excellence (NICE, or "Nasty" as it sometimes known) have a secret agenda to privatise the health service? Surely its latest pronouncement to the effect that patients should not expect the NHS to save their lives if the treatment required to do so would be too expensive, must be designed to be so outrageously offensive as to deliberately discredit the whole principle of healthcare funded through taxation.
No? Then what on earth could its members have been thinking when they laid down a ruling that doctors and nurses were to defy the most fundamental moral inclination, not only of the medical professions, but of the human community: to do whatever is necessary to save an individual life in one's care? We must knowingly withhold effective treatment from the dying because it is not cost effective: is this what the great ideals of the NHS have come to? If it... really has made it necessary for rationing to become as ruthless as this, then there can be no justification left for refusing people the right to pay for additional drugs or treatment that the NHS admits it cannot afford.
Clearly, to support rationing of life-saving care because of the inability to afford the costs of providing for everyone, NICE cannot otherwise be squandering limited healthcare resources on ineffective, unsound, predatory or wasteful interventions. The NICE guidance report, Social Value Judgements, addressed this potential objection right off by saying that its decisions are based on the best science and highest bioethical principles. It began by stating that in establishing its clinical care guidelines, NICE uses the best available evidence to determine the effectiveness or efficacy and cost effectiveness of health care.
[This is why it is so vitally important for everyone to understand what makes sound science and credible evidence, and to understand the concept of ‘fair test’ in research. As has been examined before (for example, HERE, here, here, here and here) its claims of using the best evidence are arguable.]
NICE went on to clarify that “evidence is not always of good quality and is hardly ever complete.” Therefore, it has to make judgements: scientific value judgements, about interpreting the quality and significance of the evidence available, and social value judgements, that relate to society rather than science. “This document is particularly concerned with the social value judgements that NICE should adopt,” it said.
Respect for autonomy — This means “patient choice” except, it stated, those choices that must be imposed on the entire population for the good of public health; it exampled lifestyle behaviors such as smoking bans.
Non-maleficence — This means “do no harm” and balancing benefits and harms.
Beneficence — This means an obligation to benefit the individual, but since no public health intervention is always helpful for everyone, it stated, the balance of benefits and harms is more relevant for this paper.
Justice — This refers to the fair and appropriate provision of services that balance demands and resources.
Justice in allocating limited healthcare resources within society is traditionally approached two ways, it said. The first is the utilitarian approach, which allocates resources to most benefit society as a whole, “sometimes at the expense of fairness... and may not help in eradicating health inequalities.” The second is the egalitarian approach, which divides resources to allow each person a fair share, as possible. But, it stated, this approach cannot be applied when resources are limited.
HOWEVER, it said, NICE “does not subscribe fully to either approach” in determining the justice of distributing resources. NICE emphasizes procedural justice, the paper stated. This means, it said, only that its decisions are transparent, fair-minded and made public. And under this principle, “NICE is accountable for its reasonableness.”
In making its recommendations for interventions that provide health benefit, NICE said it weighs clinical and public health effectiveness and cost effectiveness. Simply put, that to be cost effective, the actual costs are compared against the expected health benefit (cost-utility analysis). But, as with any health intervention being promoted, we must look for the doublespeak and how feel-good words are being defined, because their real meanings are very often different from what we might believe.
It is how NICE defines a ‘health benefit’ where this report brings the most disquieting bioethical proposals.
What are [the] fundamental bioethics premises, as I see it? I'll mention just a few: a rejection of the sanctity of human life, by which I mean that all human beings have equal moral worth. An acceptance of a so-called "quality-of-life" ethic by which some human beings are deemed to have greater moral worth than other human beings. A belief that there is such a thing as a born human being who is not a person, which means that in the end, there are no such thing as universal human rights. Sooner or later, such beliefs lead directly to advocacy for the permission to destroy life unworthy of life... — Wesley J. Smith, Culture of Death: The Assault on Medical Ethics in America letter, October 10, 2001
Quality of Life
The main health outcome measure that NICE uses is the quality-adjusted life year (QALY). A QALY is a unit that combines both quantity (length) of life and health-related quality of life into a single measure of health gain. NICE uses the QALY as an outcome measure because it takes into account not only the increased life expectancy from an intervention, but also the quality of the increased life. In addition to recognising that much of healthcare is concerned with improving people’s quality of life, it also reflects the value judgement that mere survival is an insufficient measure of benefit; and that the expected quality of life years gained also needs to be considered.
But when one intervention appears to be more effective than another, NICE states it will decide if the higher costs for more effective intervention represents reasonable value for the National Health Service. For the first time, NICE has identified the amount of money that the quality of each life year is worth.
Interventions that will be generally considered cost effective will be those with an ICER (incremental cost-effectiveness ratio) of less than £20,000. If interventions cost more than that, an advisory body will need to make increasingly stronger cases to support it as an effective use of government resources.
NICE went on to state that it encourages comments from consultees and stakeholders in amending its guidance, but that its powers are absolute:
[I]t is for the Institute alone to make the decisions entrusted to it. NICE and its advisory bodies must not respond to ‘special pleading’ but must be consistent in using its own judgement to make sure that what it recommends is cost effective and takes account of the need to distribute health resources in the fairest way within society as a whole.
NICE also went on to add a provisional statement to the idea of an individual’s choice:
The Citizens Council emphasised the importance of individual choice and of respecting individuals’ values, cultural attitudes and religious views. However, it recognised that it might sometimes be necessary to limit individual choice in the interests of the population as a whole.
And, as the newspapers noted, NICE rejected adopting the “Rule of Rescue.” This is the human urge “to help an identifiable person whose life is in danger, no matter how much it costs.” But, NICE said, it must compare the needs of the individual to those of the National Health Service: “When there are limited resources for healthcare, applying the ‘rule of rescue’ may mean that other people will not be able to have the care or treatment they need.”
It added two statements about anti-discrimination that might seem reassuring... at first glance.
Access to state-covered care that NICE determines is necessary and appropriate cannot be denied, restricted or different because of race, disability, age, gender, sexual orientation, religion, beliefs or socioeconomic status. EXCEPT, “where age is an indicator of benefit [as it defines quality of life] or risk, it can be taken into account.”
NICE will also not decide access to care based on if a condition was self-induced and dependent on a person’s behavior. EXCEPT, “if the behaviour is likely to continue and can make a treatment less clinically effective or cost effective, then it may be appropriate to take this into account.” In other words, if people don’t comply with the health behaviors the governmental health system has determined necessary, or if the government can assert that people may continue/resume their bad behaviors, it can deny or restrict care.
The NICE document went on to note that some initiatives may be imperative in the name of public health, which it stated “refers to the efforts of society as a whole to improve health.” This does not refer to medical care, it stated, but “interventions aimed at prevention,” based on the belief that the most burdensome healthcare costs can be prevented by behavior. It was not referring to immunizations, clean drinking water and other proven public preventive health interventions; it exampled lifestyle behaviors.
[This is why it is so important for us to understand what makes sound science and credible evidence; and to understand that obesity, physical handicaps, and chronic diseases (such as heart disease, cancers and dementia); which are primarily due to genes, aging and luck; cannot credibly be blamed on people or bad behaviors. The discriminatory measures NICE uses in its preventive health guidelines are also largely genetic and related to aging, and are not notably malleable with lifestyle behaviors. There is no special diet or virtuous lifestyle or mental capability that sound science has ever shown can prevent cancers or heart disease, or slow aging. Such beliefs are grounded in vitalism, not science. Alternative modalities, diet and lifestyle ideologies may seem harmless, feel-good or profitable for stakeholders, but they are serious issues to those who remember history.]
While traditional bioethics emphasize the freedom of the individual, NICE said, a successful public health approach limits individual autonomy. It then said that when necessary, it was “legitimate for authorities to intervene in a ‘mandatory’ way.”
This NICE document, defining the benefit of lives in terms of their quality and burden to society, is the closest in recent history to the 1920 book by Dr. Alfred Hoche, M.D. and professor Karl Binding’s book, Die Freigabe der Vernichtung lebensunwerten Leben (“Permission to Destroy Life Unworthy of Life”). This famous document, whose authors were two of the most respected academics of the time — Dr. Hoche, a physician and humanitarian from the University of Freiburg, and law professor Binding from the University of Leipzig — is credited with planting the seeds of euthanasia. They had made a compelling, and seemingly reasoned and necessary, argument that the lives of some held lesser value to society, their quality of existence was unbearable, and were Ballastexistenze (“burdensome existences”). Chronically ill, disabled or mentally ill were described to appear to have less intelligence, more antisocial behavior and less human value. Doctors were encouraged not to save the lives of those less worthy:
Their life is absolutely pointless, but they do not regard it as being unbearable. They are a terrible, heavy burden upon their relatives and society as a whole. Their death would not create even the smallest gap—except perhaps in the feelings of their mothers or loyal nurses.
This NICE guidance, outlining the guiding values for rationing national healthcare, is not just some trivial document. And, as unreal as it seems, this is for real and today. This is the inevitable outgrowth of what happens, as history has taught, when health becomes public. When health is a measure of good citizenship. This is the foreseeable results when government foots the bill for healthcare: the state then assumes power to decide what happens to an individual’s body and to determine when a life is of insufficient quality or too costly to society to preserve. This document doesn't just affect our friends in the UK or our fellow healthcare professionals put in the position of turning away from people in need. Its cautionary messages speak to all of us.
It is not melodramatic to state the obvious: To ignore the bioethical issues that this document raises, is to plant the seeds that were sewn in the darkest hours of human history.
Progress, far from consisting in change, depends on retentiveness. Those who cannot remember the past are condemned to repeat it. — George Santayana (1863-1952)
© 2008 Sandy Szwarc. All rights reserved.
[Questions? As the research behind the issues raised in this article has been previously covered in-depth, see Google search tool at bottom of sidebar for background articles.]