Money oil and angel powder: when medical law meets mad beliefs

_This could be the shining hour

Based on all those mad beliefs

In the money oil and angel powder

In the new age magazine_

• Grant Lee Buffalo, The Shining Hour (1993)

Law and medicine have much in common. Both view themselves as rational disciplines. Both are informed by evidence. Both seek to apply general rules to specific situations in a consistent and explicable manner.

How, then, do law and medicine cope when they encounter irrational beliefs? How do practices that rely on logic and evidence deal with people who show scant regard for either? The answer, it turns out, depends - to a significant extent - on the context in which the encounter occurs. While some kinds of irrational healthcare decisions receive considerable legal protection, other kinds are readily ignored or overridden. To some extent, this differing treatment can be explained in terms of widely accepted legal principles. In some instances, though, it is harder to discern a clear rule, leading to a degree of suspicion that some sorts of irrational beliefs are granted a somewhat privileged status over others.

To understand this interaction between law, medicine, and the irrational, it is useful to distinguish several different situations.

1. Refusing proven treatments

Declining medical treatment is a legal right. In New Zealand, this is contained in the Bill of Rights Act 1990, Section 11 of which provides that "Everyone has the right to refuse to undergo any medical treatment." The UK, US, Australia and almost all other democratic societies have similar provisions.

Like most legal rules, though, this is subject to a couple of conditions. For one thing, the right extends only to adults. Children below the legal age of consent (16 in New Zealand) will not be allowed to make such decisions unless they can demonstrate sufficient maturity; what in English law is called 'Gillick competence'1.

This also means that parents are not allowed to refuse necessary treatments on behalf of their children. At the time of writing, an English High Court judge has just granted an order for a seven-year-old New Zealand boy to be placed in protective custody after his mother went on the run with him; the mother apparently wanted him to be treated with natural remedies for his brain tumour, rather than the radiotherapy favoured by his father and doctors2. Although parents have significant discretion in choosing for their children, this almost always reaches its limits at the point where medical professionals regard treatment as in the child's best interests.

A second condition is that the patient be legally competent to decline the treatment. Unlike children, adults are presumed to be competent, but this presumption can be rebutted by evidence to the contrary. Mental illness will sometimes, though not always, undermine competence. So too might the immediate aftermath of trauma, or drunkenness, or the effects of anaesthesia or blood loss.

Somewhat confusingly, although the refusal must be competent, there is no requirement for it to be rational. As Lord Donaldson put it in one famous English case, "it matters not whether the reasons for the refusal were rational or irrational, unknown or even non-existent."3So how does the law reconcile these rules? What does it mean for a decision to be competent but non-rational?

Case law has revealed that certain factors play a consistent part in these sorts of judgments. Being able to understand the nature of the proffered treatment, and the probable consequences of accepting or refusing it, is important. In one famous case4, a schizophrenic man who was diagnosed as having gangrene refused amputation of his leg. Although his refusal was partly because of a delusion that he was a famous surgeon who knew better than the doctors, his refusal was ultimately respected, after he was able to consider the likely outcome if the doctors proved correct. He would, he clearly stated, rather die with two legs than live with one.

Refusals on religious grounds are also routinely honoured, at least when they arise from consistently and clearly held religious views. Hence, Jehovah's Witnesses are permitted to refuse blood transfusions, and Christian Scientists to refuse all medical interventions, even if those are necessary to save their lives.

The mere possession of odd or unorthodox beliefs and values, then, will not ordinarily be enough on its own to rebut the presumption of competence. Or so goes the theory. In reality, courts have sometimes struggled with the distinction between competence and rationality, particularly when they are faced with idiosyncratic non-rational beliefs.

The Case of the Evil Blood5

As with the Jehovah's Witness cases, the patient here wished to refuse a life-saving blood transfusion. Unlike those cases, her refusal was not based on any recognised religion, but on a belief that her blood was "evil, carrying evil around [her] body." Although this premise may be considered bizarre, the patient's reasoning from it seemed to display a certain logic. When it was pointed out to her that a blood transfusion would involve someone else's blood rather than her own, she explained that while this was so, the clean blood would mix with her own, and thereby become contaminated with the evil carried by her own.

The judge faced with determining this case was faced with conflicting psychiatric evaluations. One of these saw the patient as suffering from a psychiatric disorder, and the refusal as a manifestation of that disorder. The other, while regarding the patient as harbouring very strange beliefs, regarded her reasoning process as fundamentally sound, concluding that her refusal should be accepted.

In the event, the judge opted to follow the recommendation of the first psychiatrist, holding that "this assertion and belief of Ms T is a misconception of reality which can more readily be accepted to be, and on the present evidence should be accepted to be, a disorder of the mind and further or alternatively symptoms or evidence of incompetence."

We are not psychiatrists, and it may well be that - in this instance - the correct decision was arrived at. Of some concern, though, is the contrast between this case and the Jehovah's Witness cases. On the one hand, a belief in "evil blood … carrying evil around my body" is the sort of belief from which a finding of incompetence can be drawn. On the other, an idiosyncratic interpretation of an Old Testament rule6 is the sort of irrational but competent belief that must be respected. While each case must be approached on its own merits, it would be troubling if reasons for refusing were being evaluated on the basis of how many people share the belief. Sanity, as Orwell had his famous protagonist say, is not statistical. Since both beliefs seem to rely on metaphysical postulates that are not readily amenable to scientific (dis)proof, it isn't immediately obvious why they should be treated differently.

2. Demanding unproven treatments

In general, then, adult patients are allowed to decline treatment, unless it can be shown that they are incompetent to do so. Does it follow that the same applies to demands for treatment?

Although refusals and demands are both expressions of autonomy, courts throughout the English-speaking world have adopted very different positions to them. While competent refusals of treatment must be respected, healthcare professionals are under no obligation to comply with a patient's demand for a treatment. This is especially the case where the treatment is not considered to be in the patient's best interests; courts will not instruct a doctor to provide a treatment against her best clinical judgment.

On the other hand, a healthcare provider in New Zealand is required, under the Code of Patients' Rights, to treat all patients with respect. Under Right 1(3), "healthcare consumers" have a "right to be provided with services that take into account the needs, values and beliefs of different cultural, religious, social and ethnic groups, including the needs, values and beliefs of Maori."

Does this mean that healthcare providers are obliged to provide unconventional or unproven "services" at the demand of a patient, if those are part of that patient's cultural, religious, social or ethnic group? Could this extend to the devoutly religious demanding faith healing or prayers, or members of New Age communities insisting on being treated with crystals or homeopathy?

Fortunately, the Code is likely to be interpreted in a more sensible manner. As Professor Peter Skegg, the foremost authority on New Zealand medical law, has explained: "A provider is not required to provide a different level of service to a Pacific, Jewish, gay or Greek consumer, but the manner of provision should take into account the consumer's differing 'needs, values, and beliefs.'"7 Hence, it is permissible for a provider to refuse to provide what s/he sees as a non-beneficial service, provided s/he does so in a respectful and courteous manner; the surgeon who informed his patient that her "thoughts [on obesity] were fucked" was, unsurprisingly, held to be in breach of the Right!8

So, a healthcare provider will not be legally obliged to act in accordance with a patient's weird beliefs. But what of the ethical situation? Should the provider go along with a patient's preferred treatment, even when s/he is quite convinced that it has no clinical benefit?

In some situations, it is easy to see why the provision of non-conventional treatments can be problematic. Milan Brych, notoriously, defrauded the life-savings from desperate cancer patients, while also very possibly harming them in even more serious ways.9 In a recent Health & Disability Commissioner case10, a natural therapist and iridologist was censured for continuing to treat a woman's invasive tumour long after the point where it should have become obvious that the case was beyond her competence and required specialist attention.

In the latter case, the practitioner argued that the patient demanded the treatment, and steadfastly refused to seek a conventional consultation. This version of events was disputed by the patient and her family, but even if true, the practitioner was still under a duty to communicate the severity of the situation to the patient, a duty which, the commissioner held, she failed to discharge. (In fact, the HDC went a good deal further than that, concluding that the practitioner persuaded the patient not to seek conventional treatment.)

What, though, of the situation where alternative treatment is almost certainly not going to make matters worse, either because the patient's situation is beyond the help of conventional medicine, or because the alternative treatment has no discernible effect at all? How could anyone object to providing, say, homeopathy or 'prayer therapy' for a dying cancer patient? Even if the only effect was psychosomatic, such effects are known to be more than trivial. And the possibility - however remote - should perhaps be acknowledged that a treatment currently thought to confer no benefit may in fact transpire to be very beneficial indeed. As bioethics professor and former neurosurgeon Grant Gillett says, "a certain humility in the light of the incompleteness of medical knowledge is always appropriate".11

Gillett's approach to such long-shot interventions is essentially to ask: What's the worst that can happen? As he argues, " where the patient's predicted clinical course is terminal, then desperate measures of unproven efficacy can be tried in that the balance of harm and benefit cannot be further worsened." In such a situation, there is a fairly compelling case to be made for acceding to the patient's wishes, however unorthodox, at least where the intervention has negligible cost - either to the patient's health, or the healthcare budget.

Before leaping to this conclusion, though, we should perhaps stop to consider whether there is another sort of cost involved when healthcare professionals reach (however reluctantly) for the 30C Arnica Montana, the New Age crystals or the prayer beads.

Why physicians shouldn't always comply with patient demands for treatment

Giving hope or comfort to a desperate patient or family may certainly be a worthwhile endeavour, and it may seem like an uncaring physician who would withhold such comforts. Furthermore, respecting the views and values of the patient, even if those are unorthodox or irrational, may seem respectful of autonomy. But a medical profession in which doctors provide 'treatments' simply to placate patients, or to make them feel like 'something' is being done, may be a very different form of profession. Arguably, it may not even deserve to be called a 'profession' at all. And the change may not be for the better.

For one thing, the mere fact of a physician prescribing or providing a 'treatment' may be seen as in some way endorsing that 'treatment' as legitimate for the condition. Patients may assume that if the 'treatment' did not provide some kind of benefit - or at least offer the possibility of benefit - doctors would not provide it.12 If the effect of this is to encourage reliance on practices and substances that have no known medical efficacy, by giving them a medical 'stamp of approval', then this may be worth taking into account.

A less tangible cost may lie in damage to the integrity of the medical profession. This could take the form of erosion of trust in doctors; if doctors provide treatments that not only do not work, but which they know do not work, is it possible that their reputation for honesty will be undermined?13 And if patients cannot trust doctors to be honest with them, how will this impact on doctor-patient relationships?

A third threat may be to the idea of medicine as a rational, evidence-based practice. As Marcia Angell argues, "[t]here cannot be two kinds of medicine … There is only medicine that has been adequately tested and medicine that has not, medicine that may work and medicine that may not work."14 In a similar vein, David Shaw has argued that official support for homeopathy "could weaken patient confidence in the organisation, and in science and medicine more generally".15

Patient autonomy has become an important - some would say the important - ethical value in contemporary medical practice. The days of 'doctor knows best' paternalism are long gone, and few who remember them are likely to miss them. But doctors are not merely shopkeepers, and hospitals are not Starbucks outlets, handing over anything that patients are willing to pay for, whether or not it is likely to benefit them. It would be easy for doctors to hand over 'money oil and angel powder' on demand. It would make them popular with certain patients, and may even leave those patients feeling better. But if we value medicine as something more than a branch of the service sector - if we value it as an endeavour that is intrinsically bound up with reason and evidence - we should think carefully before requiring its practitioners to comply with demands for the unproven and the irrational.

Notes and references

1. A concept derived from the House of Lords decision in Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402.
2. 'Police trace Kiwi mum, cancer boy', New Zealand Herald, 7 December 2012.
3. Re T [1993] 3 WLR 782
4. In re C (Adult: Refusal of treatment) [1994] WLR 290
5. The NHS Trust v. Ms T [2005] 1 All E.R. 387
6. Leviticus 17:10: And whatsoever man there be of the house of Israel, or of the strangers who sojourn among you, who eateth any manner of blood, I will even set My face against that soul who eateth blood and will cut him off from among his people.
7. Skegg, P.D.G. 'The Code of Patients' Rights', in Skegg and Paterson, eds. Medical Law in New Zealand (Wellington; Brookers, 2006), at p.37.
8. Case 09HDC01315, 22 January 2010
9. For a detailed description of these events, see 'Cancerman: The Milan Brych Affair' at https://tvnz.co.nz/cancerman/milan-brych-affairs-s2012-ep1-video-5041560
10. Case 10HDC00970, 29 June 2012
11. Gillett, G. 'Vitamin C: ascerbic ethical discussions.' Journal of Law & Medicine (2010); 18(2): 263-7.
12. Brody, H., Tomlinson, T. 'Futility and the Ethics of Resuscitation.' Journal of the American Medical Association (1990(; 264(10): 1276-1280.
13. Brody, H., Miller, F.G. 'Professional Integrity and Physician Assisted Death.' The Hastings Center Report (1995(; 25(3):8-17.
14. Angell, M., Kassirer, J.P. 'Alternative Medicine - the risks of untested and unregulated remedies.' England Journal of Medicine (1998); 339: 839- 841.
15. Shaw, D. 'Homeopathy is where the harm is' Journal of Medical Ethics 2010; 36: 130-131.
16. Dr Colin Gavaghan is an associate professor in the Faculty of Law, and Director of the New Zealand Law Foundation Centre for Law & Policy in Emerging Technologies, at the University of Otago. Cait O'Donnell is a graduate of the University of King's College and Dalhousie University (Nova Scotia, Canada), and of the University of Otago, where she recently completed her Masters in Bioethics and Health Law. Her thesis was on Physicians' Authority over Treatment and Patients' Right to Demand Treatment.