W1A-014 Health and law-0.txt
Tragic choices in resource allocation: can we learn from Oregon?

CHAPTER ONE

DECIDING WHO TO TREAT IN THE NHS

"Assuming that a society has made some kind of decision as to how many kidney machines it will produce, how many soldiers it will need for a limited war, or how many births it can tolerate, how does it decide, explicitly or implicitly, who gets the kidney machines, who gets picked to serve in that limited war, who gets to have children?" Guido Calabresi (1)

It is widely recognised, but accepted with difficulty, that health services today have finite resources to cover an infinite demand for treatment. Health care, despite provisions in the European Social Charter, the United Nations Declaration of Human Rights and the Major Charter, is not the fundamental human right it is often thought to be, but instead must be rationed. The term, "rationing", used frequently to refer to the distribution of provisions at times of war, conjures up for many, images of scarcity, unfairness or discrimination. Indeed, it is these factors which give rise to most of the controversy relating to resource allocation, as people often feel that they have been unfairly treated - or not treated, as the case may be.
Doctors taking the Hippocratic Oath must be all too aware of the impossibility of "giving their services for nothing" and of "serving one who is a stranger in financial straits." (2) Physicians have a part to play in making decisions involving the allocation of resources, although ultimately, this up to the politician. This is necessarily the case, as Dr. David Hadorn observes, because, "Physicians and other health care professionals are the only members of society with a broad enough perspective to estimate and compare the quality of life effects of different medical treatments." (3)
The cost of highly sophisticated, modern, medical technology is just one ironic reason why health authorities cannot afford to fund all necessary treatment: they spend money on this new equipment and consequently cannot afford to administer basic treatment to everyone. Another reason is that people are now living longer, and the elderly constitute the largest group of health care consumers.

The problem, then, lies in the weighing-up of the arguments. Is the limited money better spent, for example, on hip replacement operations for one hundred seventy-year-olds, or on neuro-surgery for two thirty-year-olds? Should there be a cut-off age at which treatment for the elderly is stopped or refused? Interestingly, such discussions were taking place as far back as the Nineteenth Century, as Bernard Shaw recounts in his Doctor's Dilemma, where two doctors discuss the fate of two men both requiring the same treatment to save their lives.

Sir Patrick "Well, Mr. Saviour of lives: which is it to be? That honest decent man Blenkinsop, or that rotten blackguard of an artist, eh?"

Ridgeon "It's not an easy case to judge, is it? Blenkinsop's an honest man; but is he any use? Dubedat's a rotten blackguard; but he's a genuine source of pretty and pleasant and good things." <(4)

Has the brilliant, but morally corrupt Dubedat got more right to the treatment than the good, but unremarkable Blenkinsop? Decisions involve complex elements, such as the likelihood of the treatment's success, whether there would be a great deal of pain, whether or not the family would be adversely affected, and whether or not the patient himself feels that the quality of life would be substantially improved. Unfortunately, there are no easy answers to these questions, and no definitive method of measuring the very controversial area of priorities.

It must be accepted, therefore, that all of the people will not be able to have their treatment funded all of the time. The question is rather, how can limited resources best be distributed to benefit most of the people most of the time?

Promises for those in the N.H.S.

Robert G. Evans, in his article, "'Rationing' Health Care: The Loaded Alternative", described the NHS as seen through the eyes of hostile Americans as, "endless waits to see overworked and undertrained staff in obsolete and undermaintained facilities. Patients may be denied life saving treatment if they are old or for other reasons fail to receive high enough priority for scarce services whose availability is controlled by heartless, or at least unaccountable beaurocrats."

This criticism probably goes too far: facilities are hardly "obsolete" and nor can the decision-makers be described as "heartless," but the system is certainly far from perfect.

Article 25 of the Universal Declaration of Human Rights states that, "Everyone has the right to a standard of living adequate for the health and well-being of himself and his family, including food, clothing and medical care."

The Major charter established three basic rights emanating from the NHS Reforms, which were to come into effect in 1992: "a right to health care on the basis of clinical need....a right to receive emergency medical care at any time....and a right to be guaranteed admission for treatment by a specific date no later than two years from the day when your consultant places you on a waiting list."

This all appears very optimistic but seems to be based on an assumption that there is enough money to cater for treatment for everyone. However, there is only a limited amount of money to pay for treatment to which everyone is apparently entitled, and this was recognised in the NHS Reforms, which, it was stated, "could allow purchasers to allocate resources according to the patients'capacity to benefit from care."

This provision demonstrates the logical conclusion that finite resources must be rationed and allocated according to where they will do the most good. So, there are rights to treatment, but these are in conflict with its cost. As touched on previously, one of the reasons offered for this is the increasing attraction of new medical technology. Sophisticated skills and tools are often procured at the cost of "ordinary" treatment, and what health services are capable of doing far exceeds what they can afford to do. Time and money expended on one thing necessarily excludes the opportunity of spending them on something else, and clinicians now face the difficult task of deciding between the utility of innovations that modern science has created, which may save some gravely ill patients, and the advantage of providing everyone with at least basic treatment.

THE QUALITY OF LIFE

In the United Kingdom, unlike in Oregon, there is no legislation designed to assist the decision-maker in deciding who should be treated. In the past, age, gender and moral worthiness have been used as factors in decision-making, but in a modern, supposedly equal society, such criteria are anachronistic and unfair. The sole criterion derives from pure reason - that the money should be spent where it will be most beneficial; but what is meant by "most beneficial?"

A simplistic response would be that treatment is most worthwhile where it will save a life, or in other words, postpone a death. However, this is not always the best solution. If, for example, the victim of a serious car accident was so brain damaged that he or she had to have constant observation, was in chronic pain, breathed by means of a ventilator, was tube-fed and had lost all human dignity, would that person not perhaps be better off dead?

The recent case of two-year-old Thomas Creedon illustrates this point. He is both deaf and blind, is thought to be in constant pain and is fed through a hole in his stomach. Basically, his existence is being maintained by the marvel of medical technology, but does he have any sort of acceptable quality of life? His parents, battling to allow the treatment to be terminated obviously do not think so, and indeed, it can be argued that the money spent to keep his body functioning just enough to keep him alive would be much more effectively spent elsewhere, if it meant that another patient's quality of life could improve.

A similar issue arose in Laura Davies's case. This child had undergone treatment throughout her five years for a serious bowel complaint. When it seemed that no cure could be found, her parents enquired about a transplant, but were discouraged by British doctors, since it was an experimental operation for children, and no-one had ever survived it for more than six months. Despite this advice, Laura had two massive multi-organ transplants in America, at a cost of £ 1 million, before her death some months later.

There have been many criticisms of the parents of this tragic child, for forcing her to endure extra months, or perhaps years of gruelling treatment, knowing that there was virtually no chance of survival, instead of allowing her to die in relative comfort.

The two cases described above show a tendency of the physicians to favour quantity of life over quality. However, it is more probable that the average person would rather have a high-quality short life than a long succession of years of suffering, with no light at the end of the tunnel. There has been a recent attempt to incorporate both of these factors in decision-making, which will be discussed in the following section.

QUALITY-ADJUSTED LIFE YEARS

QALYs, an acronym for "Quality Adjusted Life Years," constitute a principal aid to decision-making in the National Health Service. The QALY incorporates the idea both of quality of life and quantity of life, and is derived from survival data and the value of different states of health.

Before discussing the advantages and disadvantages of the QALY, it is necessary to show exactly what it is and how it is calculated. Alan Williams was at the source of the concept of QALYs. He stated that, "the essence of a QALY is that it takes a year of healthy life expectancy to be worth 1, but regards a year of unhealthy life expectancy to be worth less than 1. Its precise value is lower the worse the quality of life of the unhealthy person.....if being dead is worth zero, it is possible for a QALY to be negative, for the quality of someone's life to be judged worse than being dead." (5)

The methodology used to quantify QALYs was designed by Rosser and Kind. (6) In their calculations, they incorporate distress and disability factors, establishing eight categories of disability and four distress ratings. Disability ranges from 1 (no disability) to 8 (totally dependent and unconscious), while the four stages of distress are: A, none; B, mild; C, moderate and D, severe. A group of seventy people were asked to combine all categories of distress and disability, to evaluate them, and the average scores were charted on a table as shown below. They had to give an evaluation, based on a scale ranging from -1 to +1, so that a quality of life score of +1 indicates absence of suffering.

It is evident from this that QALY calculations necessarily involve a degree of arbitrariness. The degree of distress and disability is measured by means of a general consensus - other people decide how much pain or disability they reckon is caused by a certain condition, many of whom will not ever have suffered the symptoms themselves. This factor has given rise to much controversy concerning the justice and ethics of the QALY.

At first glance, the concept of the QALY seems like the best solution to any resource allocation problem. Obviously treatment should be funded for the person who will obtain the best quality of life from it. If faced, for example, with a thirty-year-old and an eighty-year-old, who both need a heart by-pass operation, the likelihood of its success being excellent for the younger person, promising him a normal life expectancy with minimal disability, but offering the older patient only another year of pain and suffering, the logical and reasonable response would be to give it to the younger patient.

In a perfect society, of course, all patients would be treated equally, and medicine would not take into account age, quality of life, or any other factor. However, when the issue concerns economic deficiency, meaning that choices must be made, such idealism is unrealistic and impracticable.

Michael Lockwood states that the concept of the QALY is based on a welfarist element, saying that, "other things being equal, it should be regarded as preferable to confer greater aggregate benefit than less." To him, it "doesn't seem unjust to choose to treat the patient for whom treatment is more likely to prove successful." (7) This seems a fair statement, as long as extremes of situations are involved. It is not difficult to see reasons for treating a young healthy patient before an elderly, infirm patient, or of treating a baby who will have a normal life expectancy with treatment than one with only another hour to live despite treatment.
