Yesterday, the Department of Health published its General Scheme for Advance Directives – a proposed addition to the Assisted Decision-Making (Capacity) Bill 2013, to be made at Committee stage. The publication of the scheme is certainly welcome, as is the opportunity for individuals to provide submissions to the Department on the Scheme, which will hopefully inform the final version introduced during Committee stage of the Bill.
There are a number of positive aspects to the proposal from a human rights perspective – most notably that the opportunity to make an advance directive will be open to individuals who wish to create these binding documents for both physical and mental healthcare decisions. Similarly, the scheme provides that it will be possible for an individual to refuse medical treatment, even if to do so might result in death. However, there are some important caveats on these positive provisions which merit further discussion.
The first issue I have with the Scheme, is that, similar to the rest of the Bill, the possibility of making a binding directive depends on the individual passing the functional test of mental capacity. As I have written about here before, I believe that this approach is in conflict with Article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Since the publication of the UN Committee on the Rights of Persons with Disabilities’ Draft General Comment on Article 12 in September 2013, it is now clearer than ever before that the Convention prohibits the use of mental capacity as a justification for denying or restricting a person’s legal capacity. As suggested by a coalition of civil society groups in a response to the Bill, everyone should have the right to benefit from the positive, support-oriented provisions of this legislation. I believe this principle extends to the ability to make a binding advance directive and would suggest that the person’s clear expression of her will and preferences and adherence to the registration and notice provisions of the Scheme should be sufficient to create a binding directive. Otherwise, the dichotomy between capacity and incapacity will continue to prevail, and many of those who wish to make advance directives may not be found ‘capable’ of doing so.
It is also interesting that the Scheme does not provide further detail on who is responsible for determining whether an individual has sufficient ‘capacity’ to make an advance directive. The main body of the Bill suggests that such a decision can only be made by the Courts – and there is no clarity in the Scheme as to whether medical evidence of capacity will be required at the outset in order to make a binding directive (similar to the requirements for granting a power of attorney) or whether an individual’s capacity to make the directive can only be challenged subsequently, via an application under Part 4, or some other mechanism.
Another key concern with the Scheme is that while it operates on the principle that individuals should be equally entitled to make directives for both physical and mental healthcare, it acknowledges that this conflicts with certain aspects of the Mental Health Act 2001. For this reason it proposes that advance directives will not be legally binding for patients involuntarily detained and treated under Part 4 of the 2001 Act, or for persons subject to the Criminal Law (Insanity) Act 2006. This proposal also conflicts with the Scheme’s principles of valuing autonomy and respecting will and preferences – as many of those who wish to make advance directives may have very specific concerns about what should happen if they are involuntarily detained. Again, I feel that a blanket exclusion of these individuals from the opportunity to make legally binding advance directives is deeply problematic from a human rights perspective.
Similarly, the Scheme suggests that although a person can refuse ‘medical treatment’ – the definition of ‘treatment’ is distinct from the provision of ‘basic care’ – which includes shelter, warmth, oral hydration, oral nutrition and hygiene measures. This means that an individual is not free to refuse ‘basic care’ in an advance directive the same way that she can refuse treatment. However, this does not address the more fundamental issue as to whether a person can ever refuse ‘basic care’ – and if it is possible for someone to refuse basic care, it is not clear why such a distinction between care and treatment needs to be maintained in the context of advance directives.
The Department of Health has opened a public consultation process on the Scheme, and submissions can be made before 7 March 2014, by emailing firstname.lastname@example.org.