Decision-making about hospital treatment has been undergoing a slow revolution from the old perspective of the doctor knowing best and carrying out treatment without any consultation of the patient to today’s environment which is evolving towards a shared model of decision making as exemplified by the Coalition Government’s White Paper Equity and Excellence: Liberating the NHS. Margaret Brazier and Emma Cave argue, with some justification, that a medical right to treatment on demand will not emerge but that a more “equitable right of decision-making” will become the standard in the UK.Although the NHS reforms were put on hold for consultation in 2011 it would seem likely that the massive project of NHS reforms will go ahead and become enshrined in law in 2012. Thus despite some notable advances towards a right to treatment and full respect of patient autonomy, most notably with the Human Rights Act 1998 as the catalyst, the arguments put forward by Brazier and Cave are sound and hint at the massive scheme of modernisation currently sweeping the NHS with the slogan “no decision about me without me” at the heart of NHS thinking in respect to decision-making. The Coalition government is set to embrace the equitable, shared decision-making approach which Brazier and Cave foresaw back in 2007 and believe strongly that such reforms are at the very heart of a fairer NHS:
“We want the principle of “shared decision-making” to become the norm: no decision about me without me. International evidence shows that involving patients in their care and treatment improves their health outcomes, boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment. It can also bring significant reductions in cost, as highlighted in the Wanless Report,and in evidence from various programmes to improve the management of long-term conditions.”
The international evidence which the government has been using is based in many instances on experiences in the USA where shared decision-making is also starting to become the standard for medical treatment. The government also makes use of some international research which commends the adoption of a shared-decision making model in medical systems across the world. This essay will critically discuss the argument put forward by Brazier and Cave by questioning the scope of a right to demand medical treatment in the UK in part 1 before discussing the shared-decision making proposals proposed by the government in part 2. This essay will conclude that a right to demand medical treatment does not currently exist in substantial form and that the current drift of international medical opinion and policy is towards a shared-decision making model and fits with the author’s reasoned arguments.
Part 1: A right to treatment on demand?
1.1 The Influence of the Human Rights Act
On a more abstract level the respect for patient autonomy is something which has long been recognised but only now is being fully discussed and analysed after decades of a conservative medical profession refusing to concede any ground and insisting that doctors are best placed to make such decisions: “crude paternalism is the antithesis of respect for autonomy”. The example is always cited of the patient who is mentally incapable being compelled to take treatment which constitutes a violation of that individual’s personal autonomy. But what of the mentally capable patient who demands treatmentThe key question is: how far does this respect for autonomy goIn the case of Sidaway v Bethlehem Royal Hospital Governors the notion of informed consent was crystallised and was, as Ian Kennedy notes, “the expression of the right to autonomy”. It was Lord Scarman’s dissenting voice which recognised only what English law would adopt years later: a full and freely informed decision was key to realising a patient’s autonomy in accordance with universal human rights. Indeed it was commented on as recently as 1999 that informed consent was but a myth as English courts refused to recognise the concept. Thus it can be said that the courts have steadily recognised a patient’s right to refuse treatment but the right to demand treatment has, quite simply, been comprehensively rejected by the courts as demonstrated by some notable decisions.
In recent years there has been a further drift towards recognising a universal right to health care which moves past informed consent in respect of being able to refuse treatment. Brazier and Cave point to three central developments which point toward a right to health care: Government promises of more efficient and fairer treatment, the signs of judicial activity with respect to accessing health care and finally the influence of the European Court of Justice which, in their words, has “established a limited right to access to other national health systems if your own cannot provide the care you need without undue delay”. It is perhaps the adoption of the European Convention on Human Rights into English law under the Human Rights Act 1998 which has propelled the UK most powerfully towards, although short of, a right for patients to demand treatment and an expression of autonomy which goes beyond negative rights. As Alasdair Maclean points out there is case law and precedent to suggest that the Convention has given a limited right to demand treatment to individual’s receiving medical care and attention. Maclean’s article echoes Brazier and Cave who argue unequivocally that the impact of the HRA 1998 has been muted in the sphere of personal autonomy and that the scope of any limited right to demand treatment or positive obligation is unclear:
“…the ECHR (the Convention to which the 1998 Act gives domestic effect) addresses only a limited range of rights. There is no positive right to health care; there is no equivalent to Article 25 of the Universal Declaration of Human Rights. For the most part what the Convention confers are negative rights – ie prohibitions against certain kinds of infringements of basic freedoms. Moreover, the Human Rights Act 1998 does not (whatever the media says) incorporate the Convention into English law. It renders the Convention enforceable against public authorities”
The key point here is that the Convention does not confer any positive rights with respect to medical law. Alasdair Maclean notes that “It is unlikely that a general right to treatment could be made out under the HRA 1998 – it should be remembered that, unlike education, the ECHR does not specifically refer to medical treatment.” Maclean further notes that the source of the Government’s duties in this area emanates not from the Convention but from the European Social Charter 1961 which is not a legally binding document. A further important point which reduces the impact of the ECHR is that many of the rights are qualified and derogation is permitted, for example, with respect to article 8 under article 8(2) and that, as Maclean points out, “the court will invariably be able to deny the positive obligation based on one of these grounds”. Maclean uses the case of North West Lancashire Health Authority v A, D & G where three transsexuals launched a legal challenge to oppose the decision of the local health authority to deny them gender reassignment surgery. Auld LJ observed that:
“In any event, Art 8 imposes no positive obligations to provide treatment…in determining whether or not a positive obligation exists, regard must be had to the fair balance that has to be struck between the general interests of the community and the interests of the individual, the search for which balance is inherent in the whole of the Convention”.
Brazier and Cave’s analysis ends at article 8 but it is notable that Maclean goes further by saying that articles 2,3 and 14 could all form the basis of stronger claims in respect of demanding medical treatment as contracting states are not permitted any derogations. Of course Article 2 would only be engaged where there is a life threatening emergency, article 3 would only be engaged where the individual’s treatment can be equated to being “inhuman” and “degrading” and article 14 would only be engaged if the individual being treated suffered from discrimination on grounds such as race or sex. The implications for this are that these articles form the basis of a limited set of rights which confer positive obligations upon NHS hospitals: there is no general or universal right for a patient to demand treatment under the Convention. Only where there is an emergency situation or where the patient is discriminated against will these positive obligations come into play.
Part 2: Shared Decision-making
As noted above the Government has recently embarked on a stalling period of profound reform of the NHS which aims to give full respect to patient autonomy by involving each individual in every decision which is taken. This model of shared decision making is slowly emerging as the international mould and has been the subject of a lot of research which extols its virtues. The pregnant pause which has occurred in the middle of this reform is chiefly concerned with addressing public concerns relating to the “any qualified provider” model (AQP) which has connotations for many of a part-privatisation of the NHS. But how will the Government involve patients in every decision which is made about themThe White Paper is not exactly crystal clear in this regard and proposes that patients will; have more access to information they need to make decisions about their own care, have the choice of any provider, consulting team or GP practice and “choice of treatment”. Further elaboration is missing although Glyn Elwyn notes that the implementation thus far has been “difficult and slow”. The conditions which need to be in place for shared-decision making to function effectively are formidably difficult, and Glyn Elwyn rightly observes that:
“At least three conditions must be in place for shared decision making to become part of mainstream clinical practice: ready access to evidence based information about treatment options; guidance on how to weigh up the pros and cons of different options; and a supportive clinical culture that facilitates patient engagement”
The obvious difficulties in being able to implement such sweeping reforms are obvious and it will be some time before they are enshrined in statute. Although the legislation has paused it is abundantly clear that some form of shared-decision making or “equitable” form of decision-making is going to be implemented in the UK. The drift of international opinion reinforces this theory with, as mentioned above, countries such as the USA embracing the concept and is a recognition, as Glyn Elwyn points out, of “the ethical imperative to properly involve patients in decisions about their care”.Conclusion
In conclusion the argument put forward by Brazier and Cave is valid and justified by events. It can be seen that the right of a patient to demand treatment is at present confined to some exceptional circumstances. The ECHR, perhaps the biggest stimulus of a more advanced recognition of patient autonomy, confers no general or universal right to demand treatment but instead allows only piecemeal positive obligations under articles 2,3 and 14. As Brazier and Cave rightly point out Article 8, which governs the respect for privacy and private life, is qualified under article 8(2) and effectively means that any positive obligation can be countered by a derogation. Under the other articles, as noted above, only a limited set of rights emerges which are confined to emergency life threatening situations, inhuman or degrading treatment and spurious discrimination. Thus under the ECHR the right to demand treatment has not transformed the situation from what the courts traditionally held in respect to demanding treatment. The move towards a shared decision making model under the ambitious NHS reforms further validates the argument of the authors and suggests that the UK will soon, rightly or not, be attempting to involve patients in every decision of treatment which is made.Bibliography
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