Made His Efforts Too Futile to Be Continued

"They went to sea in a Sieve, they did,
In a Sieve they went to sea:
In spite of all their friends could say,
On a winter's morn, on a stormy day,
 In a Sieve they went to sea!"

The Jumblies, Edward Lear

"Accordingly, the entire highly experienced UK team, all those who provided second opinions and the consultant instructed by the parents in these proceedings share a common view that further treatment would be futile. For the avoidance of any doubt, the word "futile" in this context means pointless or of no effective benefit…"para 93

"the prospect of the nucleoside treatment having any benefit is as close to zero as makes no difference. In other words, as I have already said, it is futile." Para 119

Justice Francis 11 April [emphasis added]

"there is a distinction between the medical definition of futility and the concept of futility in law …. Medicine looks for "a real prospect of curing or at least palliating the life- threatening disease or illness from which the patient is suffering", whereas, for the law, this sets the goal too high in cases where treatment "may bring some benefit to the patient even though it has no effect on the underlying disease or disability" …. In the present case, tragically, this is a difference without a distinction in the light of the judge's finding that the potential benefit of nucleoside therapy would be "zero". Para 44 Justice MacFarlane Court of Appeal 23 May [emphasis added]

'Futile' is a word that comes up a lot when there are disagreements over treatment between patients (or their families) and doctors.

One way of understanding these disagreements is as a clash between two fundamental principles in medical ethics. The first of these (beneficence) says that doctors must act to help or heal patients. The second principle (autonomy) says that doctors must respect patients' desires which reflect their most important values. But these principles can sometimes suggest opposite actions. What should the doctor do when what the patient wants wouldn't do any good, or would be harmful? In the past, doctors made decisions about what was in the best interests of their patients. This is called paternalism. Hard or strong paternalism is when doctors make decisions on behalf of a competent person who could decide for herself. Soft or weak paternalism is when they make those decisions when the patient has some flaw or problem in her own decision making process, eg she is confused or delirious.

In a more paternalistic era, doctors would simply not discuss or offer treatments that they felt would not benefit the patient. They believed that they knew best; patients by and large did not protest, or they did not know enough to protest. In more recent decades, there has been a shift in the doctor-patient relationship to emphasise the ethical importance of the values of the patient. There has also been an enormous increase in the number of available treatments some of which, but not all of which are beneficial. In combination, these changes have enormously increased the potential for conflict.

Moreover, there is growing acknowledgement of "value pluralism": that there may a range of reasonable sets of values. Some people may prioritise living longer, others having a better quality of life. Some people value high risk/high pay-off options, others security. Increasingly, doctors are confronted with patients with a range of different values, and in some cases, those are not standard.

The specific term 'futility' first appeared in medical ethics in the 1980s. The idea was that if doctors identified that a particular treatment was 'futile', this would solve the problem of conflicts. Doctors had no obligation to provide futile treatment, and so it wouldn't be paternalistic if they refused to do so. Or so the argument went.

In the next decade, many physicians and ethicists sought to define "futile treatment" in a way that would be practically applicable. For example, US physician Lawrence Schneiderman proposed that treatment could labelled futile if it had not worked in the last 100 cases, or if the patient would be permanently unconscious or dependent on intensive medical care.¹ Yet there were also critics. Robert Truog and colleagues, writing in the New England Journal of Medicine in 1992, argued that "the concept of futility obscures many ambiguities and assumptions".² Brody and Halevy, three years later, suggested that the attempt to define futile treatment was itself 'futile'; the available definitions did not succeed in justifying unilateral withholding of treatment.³ By 2000, some ethicists observed what they perceived to be a concept in terminal decline.⁴

As the quotations from the Charlie Gard case make clear, however, futility has not gone away. It continues to be part of legal and ethical discussion around disputed medical treatment. In this chapter, we will look at two reasons why, in cases like that of Charlie, the concept of 'futile treatment' is unhelpful. We look first at the problem of definition – it is very difficult to reach agreement on a clear (and applicable) definition of the term. We will then look at a bigger problem. Even if it is possible to reach agreement on a definition, it is rarely possible to determine with confidence when that definition applies. Paradoxically, this problem is actually made more difficult by advances in medical information and medical technology.

Language

Before trying to define futile treatment, it is perhaps worth noting some related concepts. Because 'futility' has been so heavily criticized, there has been a tendency for recent guidelines to avoid the word and use other terminology instead. There are a range of synonyms that have been suggested. (Table)

Box

Alternative terms for futility.

Some of these terms may be preferable to the word 'futility' because of their connotations. For example, a number indicate that these are 'medical' determinations – identifying the source of the judgement and possibly implying that treatment might not be futile in a different non-medical sense. Others admit of uncertainty or contextual variation ('potentially inappropriate'). At the end of the day, though, it does not matter what word we use. The ethically important question is what does it mean?

'Pointless'

Justice Francis, in his first ruling on Charlie Gard identified what he understood by 'futile'. He described futile treatment as "pointless, or of no effective benefit".⁶

This seems very close to a common-sense use of the word. If the underground train is on its way out of the station, it would be futile to run after it. If you have a large ink stain from a leaking pen on your shirt, it would be futile to scrub at it with water under the tap. If a patient has been decapitated, it would be futile to attempt to save their life by compressing their chest. These are efforts or actions that have zero chance of achieving their goal. They cannot work.

Of course, even when we know that doing something would be futile, we still sometimes do it – perhaps out of frustration, or desperation, or a need to do something. But we know in our hearts that it won't do any good.

One thing to notice about defining 'futile' treatment in terms of it being "pointless", is that it is necessary to be clear, and to agree, on what the 'point' of treatment is. Imagine, for example, that parents bring their 6 year-old child to the doctor during a flu outbreak with what appears to be influenza. Perhaps the doctor has even performed a new rapid molecular test and confirmed that this is an influenza infection. Imagine now that the parents have requested antibiotics for their son. The doctor might reasonably refuse, regarding it as pointless since viruses do not respond to antibiotics and there is zero chance that the antibiotics will cure influenza. (Giving antibiotics for a viral infection is sometimes suggested as a clear example of a 'futile' treatment).

However, that may not be why the parents wants the antibiotics. They might want them to reduce the chance of developing a secondary bacterial pneumonia. Perhaps have read a scientific paper describing the use of antibiotics in influenza in children and reporting a lower incidence of pneumonia.⁷ Or perhaps they had another child become seriously unwell after a previous flu infection and want to do anything possible to avoid this occurring. If either those are the point of treatment it isn't so clear that antibiotics would be futile. They may be unlikely to work. It may be unwise for the doctor to prescribe them (since this would contribute to wider problems of antibiotic resistance). But it isn't clear that it would be futile. After all, children do rarely die of secondary bacterial pneumonia after viral flu infections. The antibiotics might prevent that.

Of perhaps more relevance to decisions about life-prolonging treatment, it is sometimes said to be futile to prolong life using a ventilator or other medical treatment for patients who are permanently unconscious. (We will leave aside, for now, the problem of determining someone's level of consciousness, or predicting that they will remain so). That was one of the situations we mentioned above that had been identified by Lawrence Scheiderman as being 'futile'. In the highly influential UK court case relating to Tony Bland (a young man who suffered severe brain damage and was left in a persistent vegetative state after being crushed in a football stadium accident), Lord Goff wrote

"I cannot see that medical treatment is appropriate or requisite simply to prolong a patient's life when such treatment has no therapeutic purpose of any kind, as where it is futile because the patient is unconscious and there is no prospect of any improvement in his condition"⁸

Many people might share Lord Goff's view. Yet, not everyone will feel that way. In December 2013, a Californian teenage girl, Jahi McMath, suffered a serious life-threatening complication after relatively minor throat surgery. She was resuscitated, but sustained profound brain damage. Three days later, Jahi was diagnosed as being brain dead by her physicians, but the family disagreed. They argued that according to their religious views she was still alive because her heart was still beating. A Californian court supported the medical diagnosis of death, but the family continued to object to discontinuation of life-support. They found a medical facility prepared to take over Jahi's care.⁹ As of late 2017, Jahi's body continues to be supported by a mechanical ventilator in New Jersey.¹⁰

Many health professionals would regard continued mechanical ventilation for a child who has met brain death criteria as paradigmatically, unquestionably, futile. This is surely the ultimate in futile treatment?

If the point of continuing treatment is to cure the patient, then prolonging life with a ventilator would be futile for someone like Jahi McMath, since it could not fix her brain damage. If it is truly the case that a patient's condition is permanent, it would be futile to continue treatment in the hope that they will improve (and regain consciousness for example). But Jahi McMath's family wanted treatment continued because they believed that her heart beat meant that she continued to live. Of course, this is no longer the standard of life and death: today a brain death definition of death is widely accepted in medicine. However, it used to be a cardiorespiratory definition and on that definition, she would not be dead. Which definition of death we accept is an ethical decision.¹¹

We can't say that it is 'pointless' to continue medical treatments for Jahi McMath unless there is agreement about what the point of treatment is. We are not defending continued treatment for patients who have been diagnosed as being brain dead. (There are a range of reasons not to continue treatment – most importantly, perhaps, resource concerns (see chapter 4).) Our argument is simply that even in cases like this, there can be different views about what the aim of medical treatment is and what constitutes a successful outcome. These can involve contested value judgements. If treatment is going to be refused, that has to be on the basis of a value judgement about what are the appropriate goals of treatment.

The value of zero

If we could identify treatments that have literally no point or no chance of working there are some ethical advantages.

One advantage is that it potentially neutralizes concern about paternalism. Doctors do not always know best for the principle reason that people differ in what is important to them and how they evaluate medical treatments. What may be right for one person, is not right for another. At the heart of disagreements about medical treatment – like that relating to Charlie Gard, are differences in the values that families and professionals place on different options. It may not be clear that one valuation is right and one is wrong. However, accepting that there can be different reasonable ways of evaluating situations or medical treatments does not mean that any evaluation is equally valid. (For more on pluralism, and the difference between pluralism and relativism, see chapter 7) There are some evaluations that do appear to be mistaken. The most obvious of these would be where a patient desires a treatment that has zero chance of benefit, or objectively has no benefit.

The second advantage lies in the way that courts have thought about decisions to withdraw life-prolonging treatment. Doctors are sometimes in situations where continuing medical treatment will prolong life, but stopping treatment will likely lead fairly quickly to the patient's death. In that situation, there may be good reasons not to want to continue treatment. However, there may also be a concern that stopping treatment means effectively that the doctor (or court) is judging that it would be in the patient's interests to die. It may seem that the doctor or judge would be aiming for the patient to die. The first of these seems philosophically puzzling. How could someone have an interest in being dead – when they will (it is usually believed) have no interests? The second is often thought to be legally problematic. Taking actions that aim at a patient's death are often regarded to be illegal. There are different ways to resolve these concerns. One way, though, takes advantage of the perceived zero benefit of treatment. In the Tony Bland case, Lord Goff wrote

"the question is not whether it is in the best interests of the patient that he should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of treatment" (p868)

This appears to reverse the judgment. It focuses the judge's or doctors' attention on the questionable treatment rather than on death. If treatment has no benefit, it need not be provided, even if death will ensue after its removal. In fact, the judges in Bland and in subsequent cases have gone further. In a more recent case in the Supreme Court, Lady Hale wrote

"If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it." [emphasis added]¹²

This suggests that it would actually be illegal to provide or continue treatment in a situation of zero benefit.

Zero experience, zero benefit

It might be admitted that in a situation like that of Jahi McMath, there could be a point to providing treatment (to continue the life of her body, or to respect her parents' religious beliefs). But many might be tempted to think that such treatment would be of zero actual benefit to her since she has no longer any capacity for consciousness.

Brain death seems to be the clearest example where this argument applies. In California, as elsewhere in the US, brain death is determined based on lack of function of the whole brain. Jahi McMath had a series of medical tests of her brain stem reflexes. She also had a series of three electrical recordings (EEG) that showed no electrical signals from her brain.¹³

The exact nature of the relationship between brain activity and consciousness is complex and not completely understood. However, it is clear that brain activity is necessary for consciousness. Without brain function, it does not seem to be conceivable that Jahi has any ability to experience anything – either pain, or pleasure. If we assume that conscious experience is the basis for having interests, the corollary in the UK legal system appears to be that treatment would not be in Jahi's interests and consequently could not be legally continued.

There is, in fact, one UK legal case where parents have requested continued intensive medical treatment in just this sort of situation. In early 2015, a child (named in the court judgment as "Child A") suffered a cardiac arrest after choking on a small piece of fruit.¹⁴ Child A sustained severe hypoxic brain damage, and four days after being admitted to hospital he was diagnosed as being brain dead. Like in the McMath case, Child A's parents could not accept that he had died – partly because of their religious beliefs. They came originally from Saudi Arabia, where they believed that intensive care would not be withdrawn in such circumstances.¹⁵ They had requested that their son be transferred to Saudi Arabia for continued treatment. The judge in this case did not allow the parents' request, and allowed the ventilator to be turned off. This would be consistent with the line of argument alluded to above. In actual fact, there was no mention of the interests of Child A in the judgement at all. He was regarded as having died, so perhaps there was or could be no question of interests.¹⁶

The more common situation where there is a question about continuing treatment and it might be thought that the patient has no conscious experience (and hence no benefit from treatment) is that of a persistent vegetative state. That was the diagnosis in Tony Bland's case. Lord Browne-Wilkinson in the Bland case wrote "The distressing truth which must not be shirked is that is that the proposed conduct is not in the best interests of Anthony Bland, for he has no best interests of any kind."¹⁷

While this analysis may have been appropriate for Tony Bland, and reflected medical understanding of the vegetative state in 1993, the picture is now more complicated and less clear.¹⁸ Recent advances in neuroscience have suggested that some patients diagnosed with PVS (potentially only a minority) retain a limited capacity for consciousness – apparently evidenced by their ability to respond to commands in a way that can be detected by functional neuroimaging or EEG.¹⁹ The implications of this for decisions about life-sustaining treatment are complex.²⁰ However, one implication is that it is more difficult to rule out consciousness, and interests in patients who have been diagnosed as being in a vegetative state.

If a patient definitely has no conscious experience, it might be possible to argue that they have no interests. In the Charlie Gard case, however, it was not argued that he was permanently unconscious. In the High Court case in April, one of the experts at Great Ormond Street testified that the medical team believed that he was "suffering", implying some level of awareness of his surroundings. (Later in the case in July, a statement from the hospital indicated that "His depletive genetic disorder leaves him … so far as can be discerned after many months of encephalopathy, without any awareness."²¹ Importantly, if he was "without awareness" he could not suffer and a trial of therapy would not impose any suffering.)

Nearly zero

We could imagine some situations that might truly fit into the category of having no benefit. Some writers have distinguished treatment that would be "physiologically futile" - it is impossible to achieve the intended physiological goal.²² Physiological goals include, for example, restoration of circulation, remission of cancer, or cure of bacterial infection. Yet the clarity of this form of futility comes at the cost of applicability – it applies to very few of the actual cases where treatment is disputed. Some examples that have been cited of treatment that is physiologically futile include cardiopulmonary resuscitation in a patient who has been decapitated, or who has signs of rigor mortis indicating that they died hours previously. However, neither of these examples are ever likely to yield serious disputes about treatment.

But maybe the chance doesn't have to be actually zero? You might have noticed Justice Francis' qualifications in his definition of futility in the Gard case.

The judge noted that treatment might be labelled futile if it had "no effective benefit", or if the "prospect of… benefit is as close to zero as makes no difference" [emphasis added]. This seems to allow that treatment could still be called futile if it had some small benefit (but very low in magnitude) or a non-zero (but very small) chance of benefit. This sort of qualification is necessary because as we alluded above, there are some conceivable benefits of continuing treatment even in cases where most would consider this to be pointless. It is also extremely difficult to prove that there is literally no chance of treatment working. However, as soon as it is admitted that there could be some benefit of treatment, or some chance of treatment working, we then need to engage in an ethical weighing up of those benefits against the negatives of treatment. We will return to that sort of balancing process in the next chapter. For now, though it is enough to point out that it is necessary to decide how small a benefit is so small that it is not worth pursuing, or how small a chance of treatment would qualify for regarding a treatment as futile. One in a hundred? One in a thousand? One in a million? The difficulty in answering that in clear and coherent way is one of the main reasons why many ethicists have abandoned the concept of futility.

Levels of futility

When the Court of Appeal considered Charlie's case in May, one of the arguments that they considered was whether the High Court had used the wrong definition of futility. There was a distinction between a higher "medical" concept of futility, and a more stringent legal definition that might apply in a smaller number of cases. In a previous case of disputed treatment, (for a 68 year old man, David James, who had a prolonged stay in intensive care after surgery for colon cancer), different definitions of futile treatment had been used by different levels of the court. Doctors had sought permission not to provide intensive support of Mr James' circulation or kidneys or to provide cardiopulmonary resuscitation. There were different views about whether this treatment should be regarded as futile. In the case of Mr James, Sir Alan Ward in the Court of Appeal identified that a core goal of medical treatments is a "real prospect of curing or at least palliating the life- threatening disease or illness from which the patient is suffering".²³ He felt that further intensive treatment or resuscitation would be futile because it couldn't alleviate Mr James' underlying illness. In doing so, he reached a different conclusion from the lower court judge, Judge Peter Jackson, who had evaluated whether the treatment would be "ineffective or…of no benefit to the patient". This was a more restrictive test, and the judge had rejected the doctors' request to withhold further treatment; he wasn't convinced that there was no chance of recovery. Finally, Baroness Hale, in the Supreme Court, concluded that the more stringent test was the correct legal definition: treatments could be of benefit even if they couldn't cure or alleviate an underlying disease or disability. However, the judge noted that by the time that the Court of Appeal considered this case, Mr James' medical condition had deteriorated to such a degree that the more strict definition of futility applied.

In the Charlie Gard appeal, the judge felt that these different levels of futility were not relevant since treatment had been identified as futile even on the more strict legal definition.

Proving zero

Even if it were possible to agree on a particular standard for futility, there is a further challenge in assessing whether or not it has been reached for a particular patient. There are several factors contributing to this problem.

One problem is the difficulty in establishing that a treatment has no chance or no benefit. In the Gard judgment, there was considerable mention of the lack of evidence

"(20) There is no evidence that nucleoside therapy can cross the blood/brain barrier…

(101) [Dr Hirano] confirmed… that there was no clinical evidence to support the theory… there was no direct evidence that nucleoside therapy has had any beneficial effect on the brain

(106) The long and the short of Dr. I's evidence is that there is no scientific evidence of any prospect of any improvement in a human"

However, it is often observed in medicine that we should distinguish "absence of evidence" from "evidence of absence". There was no direct or clinical evidence presented in the trial that nucleoside therapy would work. But there was no evidence that it would not work either. That was quite simply because it had never been tried.

The point is not that untested treatments can or should necessarily be allowed in children in the absence of evidence. The point is rather that we cannot say that such treatments are futile if we do not know if they will work.

Here is one example that might be relevant:

In 1941, some scientists in Oxford tested a new treatment on a 43 year-old policeman with a serious skin infection. That treatment had never before been tried in a human patient with sepsis. It had been tried in an animal model of a different sort of infection. Patients with this condition usually died, and none of the proven treatments had worked for him. Was it futile to try the new treatment?

Of course, Howard Florey and Charles Fletcher did not know if Penicillin would work. It was uncertain if the antibiotic would help, and possible that it would do more harm than good. However, it would have clearly been a mistake to say in advance that Penicillin was 'futile' because there was no direct or clinical evidence of benefit.²⁴ (Ironically, the Penicillin injections in Oxford policeman Albert Alexander were ultimately without benefit, since he succumbed to his infection after the supply of penicillin ran out. However, the temporary improvement in Albert Alexander and the improvement in other patients where the new treatment was tried led to the widespread use of penicillin and further antibiotics, and to the saving of countless hundreds of millions lives.)

One of the significant contemporary challenges for identifying further treatment as being futile is the ever-expanding number of possible treatments. Of course, there has always been scientific research into new treatments and hope that these might alleviate previously-untreatable conditions. What has definitely changed, however, is access to information about those novel therapies. As in the Gard case, parents may search the internet and identify therapies that have been suggested or hypothesized to work, with which their doctors are unfamiliar. There may be the possibility (to a far greater degree than previously) for patients to travel to access those treatments.

What if treatments have been tried before? Can we say then that they won't work? As noted above, Schneiderman proposed that treatments could be called futile if they had not worked in 100 previous patients. However, even that evidence wouldn't tell us that treatment could not work in the 101st. All we could say is that the probability of treatment working is low. Statistical models imply that if something hasn't been observed in a group of 'n' patients, that the 95% confidence interval for the prevalence of this event is between 0 and $\frac{3}{n}$ . In other words, if 100 patients have not responded to treatment, we can be reasonably confident that the actual rate of treatment working is 3% or less.

Next, even if treatment hasn't worked in past patients, there is a challenge in working out whether or not that can be extrapolated to the current patient. It is challenging to define which group of patients should be used to determine the probability of treatment success. Imagine a patient with advanced cancer who hasn't responded to treatment and a new drug is being considered. Should we look at data from all patients who have received the new drug, or only patients with the same type of cancer who have received that drug, or only patients of a similar age/general health and type of cancer who have received the drug? The goal of precision medicine is to create very small classes of precisely characterised patients. But there may be multiple different groups of patients whom we could look at, yielding multiple different probabilities. Furthermore, there is an inherent tension between robustness and relevance of our estimates (this is a form of what is called the "bias-variance trade-off" in statistics). Large case series will usually contain patients with a wide range of different features. Estimates may have small confidence intervals (because they are based on large numbers), but yield potentially biased predictions. On the other hand, there may be little or no published evidence relating to other patients with exactly the same features as the current patient, yielding high variance (very uncertain) predictions. In Charlie Gard's case, there were around 5 patients in the world with his condition and none had been treated with nucleoside replacement therapy. Any trial of therapy for such a condition would inevitably involve great uncertainty.

There is a further problem, in that available data on which to base predictions may be affected by the problem of self-fulfilling prophecies.²⁵ If patients with a given condition are perceived to have a poor prognosis, they may not receive treatment, or treatment may be withdrawn. Subsequently, it can be difficult to know whether the high death rate in that group of patients is because treatment is not provided or because of their underlying condition. That can be a particular problem for predictions in intensive care.

Sometimes, it seems as though some of these difficulties with medical uncertainty are just because of a lack of scientific evidence. They will get easier with time. For example, we now have large amounts of evidence about the use of penicillin or other antibiotics in skin infections. We can use that information to work out whether treatment is likely to work for patients with a particular type of skin infection. We might be tempted to hope that the revolution in medicine with genomic information and personalized medicine will make it easier to make difficult decisions for example, about child A or Jahi McMath, David James, or Charlie Gard. However, there is some reason to think that the problem of applying past evidence to current cases will become an even greater challenge as genomic testing becomes more common. If there is information about a child's specific genetic form of disease, it may become much harder to know whether information from children with other genetic profiles can be applied. In Charlie's case, doctors had evidence from caring for other children with severe mitochondrial disease. There was also evidence from other children with MDDS. However, there was almost no evidence from other children with Charlie's specific genetic form of disease – RRMB2, because it was so rare.

The more specific and the more detailed genomic evidence that becomes available, the harder it will be to apply evidence from other patients. But also, the harder it will be to conclude that treatment cannot work. We will consider some of the challenges in obtaining and interpreting scientific evidence in Chapter 5.

Conclusion

One potential way to resolve disagreements about medical treatment between families and health professionals would be to resort to the concept of futility. However, hoping that 'futility' will make disagreements easy to resolve seems naïve and doomed to fail. The only clear definition of futile treatment, on which there appears to be agreement, is that of "physiologically futile" treatment, where there is no physiological mechanism by which treatment could work, and hence no chance of benefit. However, this definition does not appear to apply to the cases that actually come to the courts – like that of Charlie Gard or David James.

In almost all cases where there is a dispute about treatment there is some chance or some degree of benefit. The real question is whether there is benefit enough to provide it. But to work out whether that is the case we need to consider the reasons in favour of treatment and the reasons against.

In fact, when we are thinking about disputes about medical treatment for children, there are two important reasons that might justify not providing treatment. Even if there is some possible benefit, treatment should not be provided if overall it would be harmful to the child. Alternatively, even if it wouldn't be harmful to the child, there would be a reason not to provide treatment if it would harm others (for example, by preventing them from receiving treatment and violating principles of distributive justice). We will consider these separately. First, when would providing treatment be against the child's best interests?

1

Schneiderman, L. J., Jecker, N. S. & Jonsen, A. R. (1990) Medical futility: its meaning and ethical implications. Ann Intern Med, 112, 949–54.. [PubMed: 2187394]

2

Truog, R. D., Brett, A. S. & Frader, J. (1992) The problem with futility. N Engl J Med, 326, 1560–4. [PubMed: 1285741]

3

Brody, B. A. & Halevy, A. (1995) Is futility a futile concept? J Med Philos, 20, 123–44. [PubMed: 7636419]

4

Helft, P. R., Siegler, M. & Lantos, J. (2000) The rise and fall of the futility movement. N Engl J Med, 343, 293–6. [PubMed: 10911014]

5

6

High court judgement, para 93

7

Maeda, S., Yamada, Y., Nakamura, H. & Maeda, T. (1999) Efficacy of antibiotics against influenza-like illness in an influenza epidemic. Pediatr Int, 41, 274–6.. There is limited evidence in favour of antibiotics in this setting. They are not usually recommended to prevent pneumonia. We aren't endorsing this sort of request – merely suggesting that it isn't necessary 'pointless' to prescribe antibiotics. [PubMed: 10365577]

8

Airedale NHS Trust v Bland [1993] AC 789.

9

Luce, J. M. (2015) The uncommon case of Jahi McMath. Chest, 147, 1144–1151. [PubMed: 25846530]

10

11

The brain death definition was introduced by a Committee of Harvard Medical school in 1968 to supplement the cardiorespiratory definition for two ethical reasons. Firstly, artificial ventilation and intensive care became very effective meaning that people could be kept alive for long periods of time even when their brain is irreversibly and catastrophically damaged. Secondly, organ transplantation became feasible and an obvious source was organs from people who were brain dead. (1968) A definition of irreversible coma. Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. JAMA, 205, 337-40. For these two very pragmatic reasons, the concept of brain death was proposed and subsequently widely (though not universally) accepted.

12

Aintree University Hospital NHS Foundation Trust v. James [2013] UKSC 67.

13

14

Re A (A Child) [2015] EWHC 443 (Fam).

15

Diagnosis of brain death, withdrawal of mechanical ventilation and donation of organs is permitted in Saudi Arabia, albeit the criteria are different (and more strict than the UK). http://www​.scot.gov.sa​/uploads/OPTO/english.pdf It is not clear, however, whether it is an option to continue mechanical ventilation if families do not accept the diagnosis of death.

16

Of note, the judge in this case made a concluding comment that ventilation should be withdrawn "to allow Child A, who died on 10th February, dignity in death". In the court hearing Justice Hayden is reported to have said "To speak in terms of best interest therefore is redundant, but to respect his young and short life, his dignity, his autonomy, requires me … to do the right thing." http://www​.mirror.co​.uk/news/uk-news/its-right-right-thing-do-5171272 "Dignity" is an even vaguer and more value laden concept than "futility." We will return in the next chapter to concepts of dignity in death, however, it appears contradictory to hold that someone who is in a vegetative state or brain dead has "no interests", but then also to claim that they have an interest in 'dignity' or a particular way of being treated.

17

Airedale NHS Trust v Bland. Op cit

18

Celesia, G. (2016) Vegetative state two decades after the multi-society task force (MSTF) Report. in M. M. Monti and W. Sannita (Eds.) Brain function and responsiveness in disorders of consciousness. Cham, Springer.

19

Monti, M. M., Vanhaudenhuyse, A., Coleman, M. R., Boly, M., Pickard, J. D., Tshibanda, L., et al (2010) Willful modulation of brain activity in disorders of consciousness. N Engl J Med, 362, 579–89. [PubMed: 20130250]

20

Skene, L., Wilkinson, D., Kahane, G. & Savulescu, J. (2009) Neuroimaging and the withdrawal of life-sustaining treatment from patients in vegetative state. Med Law Rev, 17, 245–61. [PMC free article: PMC3223396] [PubMed: 19423645]

21

22

Truog op cit

23

Aintree University Hospital NHS Foundation Trust v. James [2013] UKSC 67.

24

Greenwood, D. (2008) Antimicrobial drugs: chronicle of a twentieth century medical triumph. Oxford, Oxford University Press.

25

Wilkinson, D. (2009) The self-fulfilling prophecy in intensive care. Theoretical medicine and bioethics, 30, 401–10. [PubMed: 19943193]

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Source: https://www.ncbi.nlm.nih.gov/books/NBK537981/

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