"The rights and interests of parties other than the patient should be better accounted for" Discuss, with reference to the law governing confidentiality and the treatment of incompetent patients.

Consent by the mentally incapable raises many issues and problems for the law. The first paragraph of the 1971 United Nations Declaration on Rights of Mentally Retarded Persons reads:

“The mentally retarded person has, to the maximum degree of feasibility, the same rights as other human beings.”

The law does not allow incompetent adults to consent to or withdraw from medical procedures, nor are any other people allowed to consent for the incompetent. The courts issue a declaratory judgement as to whether the proposed treatment is lawful or not and the doctors must comply with this judgement. This is in essence the state taking a paternal approach to the incompetent adult. First it needs to be determined whether the patient is competent or not. The three stage test established in Re C (adult: refusal of treatment) is generally accepted as the legal approach and states that the patient; 1) comprehends and retains information, 2) believes it, and 3) weighs it in balance to arrive at a choice. The legal approach to decision making for incompetent patients in medical law is generally based on the patient’s autonomy, or protection of their welfare, or a combination of the two. Societal interests are also used to justify the participation of incompetents in procedures that are against the patient’s best interests.

The autonomy-based or protection of welfare legal approaches include advance decision-making and the substituted judgement test. Advance decision-making theory means that if the incompetent was previously competent their wishes from this time can be projected onto the patient once they have become incompetent. Although the law currently allows the advance refusal of treatment even if the treatment is in the patient’s best interests no case involving advance authorisation of a medical procedure that is against the interests of the incompetent has come before the English courts. There have been many arguments put forward in support of this approach, such as respect should be had for patient autonomy whatever the consequences. The Law Commission in its report on Mental Incapacity refused to accept any of the proposed argument in support of the legality of these advance directives, stating that:

“We have now recommended that reasonable treatment which is in a person’s best interests will be lawful. Advance consent to other sorts of treatment would not, however, have the effect of rendering them lawful.”

The substituted judgement test takes a different approach that the decisions made must conform with those that the incompetent individual would have made were they competent and is based on respect for the individual’s autonomy interests. The courts in England and Wales have rejected this but the Law Commission has recommended that the incompetent’s views, wishes and feelings should be taken into account when making decisions. Both of the above theories or tests still place the patient’s wishes or what is believed to be the patient’s wish at the heart of the decision. This whole area shows again the law’s willingness and eagerness to listen to the patient’s wishes but also it maintains the view that what should be done is best for the patient if the patient is not completely sane.

The best interests test on the other hand is the key example of decision-making based on the protection of the incompetent's welfare interests rather than on the patient’s decision. This theory does not utilise the principle of patient autonomy but by using the best interests test the courts are, as argued by some, still applying the patient’s wishes (if they were competent) and not other people’s such as relatives or the public as a whole. “‘Best interests’ is traditionally invoked as shorthand for treatment decision-making centred on protecting the incompetent patient’s contemporaneous welfare”. It has been accepted that Re F (mental patient: sterilisation) states the best interests test as accepted by the courts:

“(T)he common law provides … that a doctor can lawfully operate on, or give other treatment to, adult patients who are incapable, for one reason or another, of consenting to his doing so, provided that the operation or other treatment concerned is in the best interests of such patients.”

Thus procedures that are generally believed not to benefit the incompetent person’s welfare are generally not considered to be in the patient’s best interest and thus fails. The Law Commission reiterated this when it stated that non-therapeutic research with incompetent subjects fails the Re F test and may therefore constitute an unlawful battery. It has proved harder than it seems from this to get rid of the test in this area as it has been argued that the courts should also bare in mind the potential non-medical benefits to the incompetent. The case law has suggested that there are different types of interests to be considered including emotional in maintaining a close relationship and the psychological benefit obtained through altruistic action. In the American case of Strunk v. Strunk the court found that a kidney transplant from an incompetent was in his best interests as it was going to his brother and the sadness and guilt the incompetent would have felt had his brother died. In Little v. Little the court stated that the prospective donor would benefit from a “heightened self-esteem, enhanced status in the family, renewed meaning in life. And other positive feelings including transcendental or peak experiences flowing from their gift of life to another.” Day J has also said:

“(I)f the incompetent brother should happily recover from his mental illness, he would undoubtedly be happy to learn that the transplant of one of his kidneys to his sister saver her life. This at least would be a normal response and hence the transplant is not without benefit to him.”

This approach has been criticised, as the future capacity required for the incompetent to enjoy the benefit is unlikely in most cases to ever arrive and thus no benefit is ever gained. As it has been seen there are many approaches to the best interests test but it is widely accepted that not only is the physical taken into account but also the best interests in a psychological sense. There is clearly not respect for a patients autonomous decision in the best interests test scenario but the courts are trying to implement what is best for the patient’s welfare. This is due to the fact that the patient is not competent but in most cases the court is doing what is best for the patient and not for another or society as a whole thus still maintaining the idea that the patient’s interests come first. The best interests test clearly has no regard for patient autonomy and the fact that the patient is incompetent is irrelevant. It is however, unclear as to which groups are benefiting from this test apart from those that care for the person, as they would undoubtedly wish to see the person recover.

The approaches based on societal interests offer an alternative approach to the autonomy-based approaches above. This approach is usually sought when the procedure cannot be justified by using the best interests or said to be advancing their autonomy interests. The procedure must be perceived as a societal good which should be encouraged but also it must be lawful even when not in the incompetent person’s best interests. The Law Commission has suggested that non-therapeutic research and procedures that benefit others and do not significantly harm the incompetent should be lawful. There are two main approaches to the idea of societal interests, those of utilitarian theory and presumed consent.

The utilitarian approach is the standard way of invoking societal interests and balances the positive utility of procedures against the harms caused by the action that is against the medical interests of the incompetent. It is most often used in the context of non-therapeutic research due to the inefficiencies of the best interests test in this area. Non-therapeutic research is seen as a necessary process in our society as it is part of progress that is seen as necessary by society. The Royal College of Psychiatrists argues that:

“[I]t is unethical for the [psychiatric] profession to fail to do research because this deprives present and future patients of the possibility of more informed and better treatment as well as the (more distant) prospect of prevention of psychiatric disorder.” 

The presumed consent approach assumes that people in certain relationships would consent to the treatment in question had they been competent. The only way this could be done is by presuming that certain categories of relationship would consent with the knowledge that not all competent persons within these categories would consent. With regards to consent it would probably be presumed that non-invasive minimal risk non-therapeutic research into the subjects condition would be consented to.

In the English and Welsh courts it is the utilitarian approach is generally accepted while the presumed consent method is rejected as it may be argued that competent patients may be forced into treatments is this was applied.

These approaches have a similar effect to the best interests test in removing the concept of patient autonomy. They clearly do not have regard for patients’ wishes and instead try to promote treatments and procedures due to the fact that they will benefit society as a whole.

I will now discuss the law surrounding patient information and confidentiality of such information. Departure from confidentiality is allowed in three circumstances. The first two of with the patient’s consent and sharing the information with others providing care pose no problems but the final circumstance of a public interest disclosure proves more difficult. This is an area that has undergone much change in the last five or six years since the incorporation of the Human Rights Act into English law. It is believed that the current law, section 60 of the Health and Social Care Act 2001 (the current law governing the disclosure of patient information) might have been introduced to either deal with the problems created by the Data Protection Act 1998, or to address the concerns raised about the common law duty of confidentiality. The Act allows the Secretary of State to make regulations that enable bypassing the rule that consent is required to disclose patient information. The regulations authorising the disclosure of patient information are generally either made “where essential services cannot, having regard to present NHS systems and available technology, operate on (an informed consent) basis” or to disclose the information to certain persons, such as cancer registries. The regulations are subject to a number of safeguards such as they must be debated and approved by both Houses of Parliament and the ‘Patient Information Advisory Group’ (PIAG) will advise the Secretary of State on all decisions. The provisions pertaining to PIAG are intended to protect patients’ interests and must therefore have the support of the public who must have full confidence in it. The concentration of PIAG is whether the application concerns a medical process, which is in the interests of improving patient care or in the public interest and is there no other practicable alternative to bypassing consent. This appears to a worthwhile group and protective measure but in fact the Secretary of State only needs to ‘have regard to’ its advice thus the decision still lies with the secretary of state.

Patients have higher expectations in the doctor/patient relationship than ever and the new Act has been widely anticipated to scar the therapeutic relationship between doctors and patients. Patients will be aware of the possibility of their personal records being disclosed to government agencies and will thus be less likely to disclose everything to their doctors thus creating implications for the standard of their healthcare. This is a perfect example of patient autonomy being weakened by the State’s paternalistic approach to healthcare and thus patients become more wary of the healthcare profession thus ultimately effecting their own treatment. This approach to information has changed since the Bristol and Liverpool organs’ debacle. Since these two incidents the emphasis has been on the refusal to pursue research at the expense of patient autonomy and the emphasis of professional guidance is now on seeking explicit consent. Even the Health Secretary stated that the non-consensual removal and use of tissue had been unacceptable and expressed commitment to the principle of informed express consent.

In conclusion I believe that patient autonomy has huge importance in English law but that it has not gained too much importance. I believe that it is justifiable for patient autonomy to be the most important principle as ultimately it is the patient who should decide what happens to their own body and not family members or officials for societal good. There still seems to be scope for other interests to play a role in medical law, as shown by the societal interest being paramount in the utilitarian approach and issues of patient information as shown above. I believe though that these interests have been somewhat limited as shown by the Health Secretary after the Liverpool and Bristol body organ scandals. It has even been argued that there should be more emphasis placed on society’s interests. Harris and Woods argue that patients have a moral duty as in everyday life to public interest and medical law should be no exception. This argument is probably more feasible when we talk about restricting informational rather than physical autonomy. This would have to be protected by using restrictions and only when these are in place could inroads into patient autonomy be truly justified. This does illustrate nicely the law and the public’s increasing acceptance of others apart from the patient as having say in what procedures are allowed.

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