Principles for Allocation of Scarce Medical Interventions is a paper published in The Lancet on January 31, 2009, Volume 373, No. 9661, pgs. 423-431.
Three authors are credited: Govind Persad BS, Alan Wertheimer PhD, and Ezekiel J. Emanuel MD.
The purpose of this paper is to discuss the ethical systems used to distribute scarce medical resources. The examples most frequently used to define "scarce" in this document are transplant organs and vaccines during epidemics.
The opening abstract outlines the paper's content:
"Allocation of very scarce medical interventions such as organs and vaccines is a persistent ethical challenge. We evaluate eight simple allocation principles that can be classified into four categories: treating people equally, favouring the worst-off, maximising total benefits, and promoting social usefulness. No single principle is sufficient to incorporate all morally relevant considerations and therefore individual principles must be combined into multiprinciple allocation systems. We evaluate three systems: the United Network for Organ Sharing point systems, quality-adjusted life-years, and disability-adjusted life-years. We recommend an alternative system- the complete lives system- which prioritises younger people who have not yet lived a complete life, and also incorporates prognosis, save the most lives, lottery and instrumental value principles."
The authors begin by describing various ethical perspectives that can be used to decide which patients receive treatment. They list the shortcomings of each perspective:
"When evaluating principles, we need to distinguish between those that are insufficient and those that are flawed. Insufficient principles ignore some morally relevant considernations. Conversely, flawed principles recognise morally irrelevant considerations...Principles that are individually insufficient could form part of an acceptable multiprinciple system, whereas systems that inlcude flawed principles are untenable..."
The authors examine the following principles:
Treating People Equally
a. Lottery
b. First-come, First-served
Favouring the worst-off
a. Sickest first
b. Youngest first
Maximising Total Benefits
a. Number of lives saved
b. Prognosis or life-years saved
Promoting and Rewarding Social Usefulness
a. Instrumental Value
b. Reciprocity
Their conclusions are summarized in a chart that appears on page 424. (Unfortunately, due to some obscure formatting problem, I am unable to scan the chart into this post. I apologize. Please use the hotlink above to access the paper in PDF form and scroll down to the chart. It appears on page 2 of the PDF.)
Lottery
The authors define a lottery system of allocation by using examples such as military conscription and immigration. They say that a lottery system, because it works at random, is resistant to corruption. They also say it is quick and easy to apply.
However, they disagree with the notion that:
"Equal moral status supports an equal claim to scarce resources."
Their understanding of equality seems to be extremely conditional, and trying to explain their concept of equality leads to the following sentence:
"Random decisions between someone who can gain 40 years and someone who can gain only 4 months, or someone who has already lived only 20 years, are inappropriate. Treating people equally often fails to treat them as equals." (my emphasis.)
I have read this paper many times and I still find that final sentence incomprehensible. How does treating people equally fail to treat them as equals? The logic of the previous sentence- while I don't agree with it- I can understand.
The only meaning I can assign to that sentence is that the authors view equality strictly in terms of years lived. If you have lived 20 years and could gain 4 months more by having a certain medical treatment, then you are equal to another person who has lived 20 years and could gain 4 more months. But you are not equal to someone who has lived 40 years.
Does this mean that someone who has only lived 20 years is "more equal" than someone who has lived 40 years? This issue will reappear many times in this paper.
First-come, First-served
The authors reject the first-come/first-served model on the grounds that it favors the wealthy and well-connected:
"First-come, first-served allows morally irrelevant qualities- such as wealth, power and connections- to decide who receives scarce interventions, and is therefore practically flawed."
I agree with this. What I find interesting, however, is a sentence from a previous paragraph supporting this conclusion:
"[First-come/first-served] favours people who...can queue for interventions without competing for employment or child-care concerns.
While examining Dr. Emanuel's paper The Perfect Storm of Overutilization, I pointed out that the constraints of employment and child-care duties discourage many people from "overutilizing" health care resources:
There is a hidden cost as well, a cost the authors do not address. A visit to the doctor's office often means time away from work. Repeated "interventions"- no matter how inexpensive they appear on paper- can cost an employee job security. Extended hospital stays take a toll on families in terms of child care and other responsibilities.
I find it extremely interesting that when making the case that Americans "overutilize" health care resources, Dr. Emanuel and his colleagues don't acknowledge the constraints of work and child care. Yet when they need an argument to support rejecting first-come/first-served medical allocation, they immediately cite "employment or childcare concerns."
Are employment and childcare concerns a significant restrain on utilizing health care or not? Is Dr. Emanuel trying to 'have it both ways' or did his colleagues point these constraints out to him?
Is his reasoning inconsistent or have his views evolved?
Putting that aside, I do agree with the authors' assessment of first-come/first-served allocation:
"First-come, first-served allows morally irrelevant qualities- such as wealth, power, and connections- to decide who receives scarce interventions, and is therefore practically flawed."
Sickest First
The authors define the Sickest First approach this way:
"Treating the sickest people first prioritises those with the worst future prospects if left untreated. The so-called rule of rescue, which claims that "our moral response to the imminence of death demands that we rescue the doomed," exemplifies this principle. Transplantable livers and hearts, as well as emergency-room care, are allocated to the sickest individuals first."
The authors completely reject the Sickest First approach. They argue that a Sickest First system does not take prognosis into account:
"Sick recipient's prognoses are wrongly assumed to be normal, even though many interventions- such as liver transplants- are less effective to the sickest people."
A hypothetical liver transplant is used as an example. A morbidly ill person might be helped in the short term by a liver transplant, but that transplant denies a liver to another patient who has progressive liver disease, but is currently healthier. The healthier patient has a better chance of recovery if given the liver, and should get it instead:
"Sick recipient's prognoses are wrongly assumed to be normal, even though many interventions-- such as liver transplants- are less effective for the sickest people."
It is easy to see how this logic applies to organ transplants, but I am wary of stretching it too far. It requires doctors to predict the future. Medical literature has its share of 'unexpected recovery' stories, and the bold treatment of 'hopeless' patients can result in medical advances. As an example, I would offer Dr. Oliver Sacks' work with 'sleeping sickness' patients in the 1960s. In his book Awakenings, Dr. Sacks describes treating patients trapped in a trance-like paralysis for 50 years or more with L-dopa. Locked away in nursing homes for decades, many of these patients responded dramatically to the treatments, and the data collected during their treatment has expanded our understanding of brain disorders.
"[Sickest First] myopically bases allocation on how sick someone is at the current time- a morally arbitrary factor in genuine scarcity."
In a situation of genuine scarcity I can understand this point. But I would also ask that doctors not regard their predictions as inviolate.
Youngest First
Here the paper first enters controversial territory. It also introduces a phrase that will have great importance throughout the rest of the text: life-years.
"...youngest-first allocation directs resources to those who have had less of something supremely valuable- life-years."
Think back to the paragraph I highlighted earlier:
"Random decisions between someone who can gain 40 years and someone who can gain only 4 months, or someone who has already lived only 20 years, are inappropriate. Treating people equally often fails to treat them as equals." (my emphasis.)
We can now read this paragraph as comparing 20 life-years to 40 life-years. If life-years are "supremely valuable" then an individual who has consumed 40 of them is not the same as an individual who has consumed 20 of them.
The distribution of life-years is the primary concern of the rest of the text. Who has had enough already and who should be granted more is the driving preoccupation of the authors.
(One personal note: as a writer and a reader I despise the term "life-years." What other kinds of years are there? Death-years? This is numbing language that distracts us from the authors' real subject: who should live and who should die.)
The authors find Youngest First insufficient as a distribution model. They agree it tends to favor the worst-off and avoids discriminating against minorities and the poor, but point out that it discriminates against older people.
Had they left it there, most readers would agree. But it is the details that get them into trouble:
"Strict youngest-first allocation directs scarce resources predominantly to infants. This approach seems incorrect."
Take a moment to absorb that statement before reading the rest of the paragraph. Saving infants is incorrect.
It paralyzes the mind.
All right- let's take a deep breath and give the authors a chance to explain themselves in the rest of the paragraph:
"The death of a 20-year-old young woman is intuitively worse than that of a 2-month-old girl, even though the baby has had less life. The 20-year-old has a much more developed personality than the infant, and has drawn upon the investment of others to begin as-yet-unfulfilled projects."
Is the death of a 20-year-old intuitively worse? Why? Because she has a "more developed personality"? That makes a life and death choice sound like a popularity contest. What if your "developed personality" does not appeal to the judges? What your "developed personality" includes lying and cheating as basic traits?
I am also uncomfortable with the idea of saving a life in order to recoup "the investment of others." It smacks of leaving life and death decisions to shareholders.
I also think it is incorrect. An infant has received a huge investment from others: 9 months of pregnancy, labor and delivery, nursing, bathing and protecting. These activities require great dedication and commitment. And a baby is in itself an "as-yet-unfulfilled project."
Neither the infant nor the girl can be regarded as intrinsically more worthwhile by these criteria, in my view.
Save the Most Lives
The life-years issue appears again when the authors discuss the Save the Most Lives model of resource allocation.
"Since each life is valuable, this principle seems to need no special justification...Other things being equal, we should always save five lives rather than one.
However, other things are rarely equal. Some lives have been shorter than others; 20-year-olds have lived less than 70-year-olds. Similarly, some lives can be extended longer than others. How to weigh these other relevant considerations against saving more lives- whether to save one 20-year-old, who might live another 60 years if saved, or three 70-year-olds who could only live for 10 years each- is unclear."
I'm glad the authors have decided this idea is unclear, but the most significant part of this section to me is that they are now applying the "maximum life-years" prism to the idea of simply saving the most lives. The life-year concept continues to dominate their thinking for the rest of the paper.
Prognosis or Life-Years
This strategy for distributing scarce resources aims to save the largest total of life-years. As such it is an opportunity for the authors to talk about the life-years concept in greater detail:
"Maximising life-years has intuitive appeal. Living more years is valuable, so saving more years also seems valuable."
"...why give an extra year to a person who has lived for many when it could be given to someone who would otherwise die having few?"
I would like to remind readers that the paper is discussing scarce resources and emergency situations. It's important to keep that in mind while absorbing these concepts. This is not being presented as a Master Plan for the human race.
Instrumental Value
This section discusses saving people based on their value to society. It is by nature a very controversial idea. To their credit, the authors address this in the opening paragraphs:
"Unlike the previous values, social value cannot direct allocation on its own."
"...social value allocation must not legislate socially conventional, mainstream values."
They describe the principle of Instrumental Value:
"Instrumental value allocation prioritises specific individuals to enable or encourage future usefulness."
The example given is prioritizing workers in vaccine production during an epidemic, or health workers during a similar emergency:
"..all whose continued existence is clearly required so that others might live..."
This statement has the ring of common sense. The authors also caution that such a system is open to abuse, and use student military deferments as an example.
This section ends with a bit of unintentional humor:
"People also disagree about usefulness: is saving all legislators necessary in an influenza pandemic?"
(Congressional leaders, please call your offices...)
Reciprocity
"Reciprocity allocation is backward-looking, rewarding past usefulness or sacrifice."
The authors seem to realize that this is a sensitive subject and name some obvious candidates for reciprocity allocation: organ donors, nurses who treat contagious patients, military veterans.
Ultimately, however, they reject reciprocity:
"Reciprocity allocation...might potentially require time-consuming, intrusive, and demeaning inquiries, such as whether a person adhered to a healthy lifestyle."
(It strikes me that depending on honest answers to such questions would also leave a reciprocal system open to fraud, but the authors don't mention this.)
"Furthermore, unlike instumental value, reciprocity does not have the future-directed appeal of promoting important health values."
In rejecting reciprocity, the authors return to their emphasis on the future, which would presumably be reserved for those who have "consumed" the fewest "life-years."
Assessing Principles: Allocation Systems
Having examined individual allocation principles, the authors now look at systems that combine selected principles. (A chart summarizing their views appears on page 427; again, I could not reproduce it here due to technical difficulties.)
UNOS- United Network for Organ Sharing points systems.
From the UNOS website:
UNOS brings together medicine, science, public policy and technology to facilitate every organ transplant performed in the United States. Every day, UNOS assists transplant doctors, patients, and members of the public by helping to ensure that organs are procured and distributed in a fair and timely manner.
The paper describes the UNOS points system as combining the first-come/first-served, sickest-first and prognosis principles. It also calles the UNOS system flexible.
Nevertheless, the authors reject the system as flawed and open to corruption:
"Taking advantage of the first-come, first-served principle, well-off patients place themselves on multiple waiting lists. Exploiting the sickest-first element, some transplant centres have temporarily altered or misrepresented their patient's health state to get them scarce organs..."
"...Most dramatically, multiple-organ transplants to one individual are permitted, even when a heart-lung-liver combination could save three lives if transplanted separately."
The criticism I find most intriguing is the author's characterization of attempts to improve the UNOS system as "covert and haphazard":
"Explicit and public acknowledgment of allocation strategies would be preferable to this surreptitious and piecemeal approach."
This criticism harkens back to Dr. Emanuels' Hastings Center paper, Where Civic Republicanism and Deliberative Democracy Meet. In that paper he envisions "...public forums to deliberate about which health services should be considered basic and should be socially guaranteed."
Granted, the debates in those public forums would be influened solely by overlapping liberal/communitarian principles, but in these two papers Dr. Emanuel does show a consistent concern with transparency. Allocation principles, in his view, should be open, and openly discussed.
Quality-Adjusted Life-Years
This system, known as QALY, is used by the National Health Service in the U.K. From the NHS website:
With the rapid advances in modern medicine, most people accept that no publicly funded healthcare system, including the NHS, can possibly pay for every new medical treatment which becomes available. The enormous costs involved mean that choices have to be made.
It makes sense to focus on treatments that improve the quality and/or length of someone’s life and, at the same time, are an effective use of NHS resources...
A number of factors are considered when measuring someone’s quality of life, in terms of their health. They include, for example, the level of pain the person is in, their mobility and their general mood. The quality of life rating can range from negative values below 0 (worst possible health) to 1 (the best possible health).
The authors provide this example to describe the QALY system calculations:
"As an example, the quality-of-life measure used by the UK National Health Service rates moderate mobility allocation as 0.85 times perfect health. QALY allocation therefore equates 8.5 years in perfect health to 10 years with moderately impaired mobility."
The authors reject the concept of years in perfect health vs. years of impaired mobility as an allocation strategy:
"...someone adapted to wheelchair use might reasonably value an additional life-year in a wheelchair as much as a non-disabled person would value an additional life-year without disability."
This is precisely the argument I would make.
The author's final rejection of QALY then returns to their preoccupation with consumption of life-years:
"Likewise, giving QALYs to someone who has had few life-years differs morally from giving them to someone who has already had many."
Disability-Adjusted Life-Years
DALY was developed by the World Health Organization. From the WHO website:
One DALY can be thought of as one lost year of "healthy" life. The sum of these DALYs across the population, or the burden of disease, can be thought of as a measurement of the gap between current health status and an ideal health situation where the entire population lives to an advanced age, free of disease and disability.
DALYs for a disease or health condition are calculated as the sum of the Years of Life Lost (YLL) due to premature mortality in the population and the Years Lost due to Disability (YLD) for incident cases of the health condition[.]
Dr. Emanuel and his colleagues give this example of a DALY calculation:
"DALY systems also incorporate quality-of-life factors- for instance, they equate a life-year with blindness to roughly 0.6 healthy life-years."
The authors point out that one concept in the DALY calculation is the idea that certain age groups are necessary in order for a society to flourish. They disagree with this reasoning.
"This argument, although used to justify age-weighting, would equally justify counting the life-years of economically productive people and those caring for others for more."
They state that favoring wage earners and those caring for others is innapropriate, and that "Priority for young people is better justified on grounds of distributive justice."
The Complete Lives System
The stage has now been set for the authors to promote their alternative: the Complete Lives System. This system incorporates the following principles:
Youngest First
Prognosis
Save the Most Lives
Lottery
Instrumental Value
"Consideration of the importance of complete lives also supports modifying the youngest-first principle by prioritising adolescents and young adults over infants. Adolescents have received substantial education and parental care, investments that will be wasted without a complete life. Infants, by contrast, have not yet received these investments."
Again, I question the ethics of a society that calculates only the risk of losing 'investments' in its members. I would suggest that one mark of a truly ethical society is the steps it takes to protect its most vulnerable members rather than its "investments."
The authors argue that this age consideration is an expression of social justice:
"Importantly, the prioritisation of adolescents and young adults considers the social and personal investment that people are morally entitled to have received at a particular age, rather than accepting the results of an unjust status quo. Consequently, poor adolescents should be treated the same as wealthy ones, even though they may have received less investment owing to social injustice."
This justice only applies to young people with a good chance of recovery, however:
"A young person with a poor prognosis has had few life-years but lacks the potential to live a complete life. Considering the prognosis forestalls the concern that disproportionately large amounts of resources will be directed to young people with poor prognoses."
I will repeat my previous cautionary note: at this point the authors are only discussing the distribution of scarce resources during a dire emergency.
"In a public health emergency, instrumental value could also be included to enable more people to live complete lives. Lotteries could be used when making choices between roughly equal recipients, and also potentially to ensure that no individual- irrespective of age or prognosis- is seen as beyond saving."
Now we come to the infamous "attenuation" sentence which has been quoted so often by others:
"When implemented, the complete lives system produces a priority curve on which individuals aged between roughly 15 and 40 years get the most substantial chance, whereas the youngest and oldest people get chances that are attentuated."
This single sentence has spawned numerous online references to Logan's Run and Soylent Green, inspired handpainted signs at health care reform protests, and been quoted to Congressmen at townhalls.
The authors are probably thoroughly sorry they ever wrote it. It is rivalled in controversy only by this sentence:
"Unlike allocation by sex or race, allocation by age is not invidious discrimination; every person lives through different life stages rather than being a single age. Even if 25-year-olds receive priority over 65-year-olds, everyone who is 65 years now was previously 25 years."
Whenever these two quotes are cited, Dr. Emanuel's supporters always retort that the entire paper was only intended to discuss rationing in emergency situations. I'm inclined to agree, but this paper repeats ideas discussed in earlier papers- papers not devoted to emergency rationing.
And the final page contains these words:
"Accepting the complete lives system for health care as a whole would be premature. We must first reduce waste and increase spending...Although it may be applicable more generally, the complete lives system has been developed to justly allocate persistently scarce life-saving interventions." (my emphasis.)
If the authors are going to leave this kind of rhetorical door open, they must be prepared to take responsibility for it. Do they envision wholesale implementation of the complete lives system? When?
If they do envision wholesale implementation, the distribution and discussion of this paper would seem to be a necessary first step, by their own account:
"Legitimacy requires that people see the allocation system as just and accept actual allocations as fair. Consequently, allocation systems must be publicly understandable, accessible, and subject to public discussion and revision."
My emphasis. Their words.
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