Sterilisation in his best interests? A follow-up to the HEAL event at UoS on Wednesday 27/11/13

This short blog is intended as a handy summary of the points I raised in my presentation at HEAL at the University of Southampton. This roundtable discussion concerned the recent case of A NHS Trust v DE. Once again, I would like to thank Caroline Jones and Julie Wintrup for invited me over and their warm hospitality. Jess Connelly has provided a very good roundup of the overall discussion, here.

The powepoint for my presentation can be found here. My critique of the case rests on two basic claims. First, there is the issue of legal capacity, in relation to Art. 12 CRPD. My argument is that denial of capacity for DE is problematic: he was considered to lack capacity to consent to sex, was offered sexual education, and was subsequently assessed as having capacity to consent to sex.

Denial of legal capacity because of mental impairment is not permissible under the CRPD, according to the Draft General Comment on Art. 12, available here. I quote from the text of the Draft Comment:

“Normative Content of Article 12

                         Article 12 (1)

1.              Article 12(1) reaffirms the right of individuals with disabilities to be persons before the law. This guarantees that every human being is respected as a person possessing legal personality, which is a prerequisite for the recognition of an individual’s legal capacity.

                         Article 12 (2)

2.              Article 12(2)recognises that persons with disabilities enjoy legal capacity on an equal basis with others in all areas of life. Legal capacity includes both the capacity to be a holder of rights and an actor under the law. Legal capacity to be a holder of rights entitles the individual to the full protection of her rights by the legal system. Legal capacity to act under the law recognizes the individual as an agent who can perform acts with legal effect. The right to recognition as a legal agent is also reflected in Article 12(5) CRPD, which outlines the duty of states to “take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.”

3.              Legal capacity and mental capacity are distinct concepts. Legal capacity is the ability to hold rights and duties (legal standing) and to exercise these rights and duties (legal agency). It is the key to accessing meaningful participation in society. Mental capacity refers to the decision-making skills of an individual, which naturally vary among individuals and may be different for a given individual depending on many factors, including environmental and social factors. Article 12 does not permit perceived or actual deficits in mental capacity to be used as justification for denying legal capacity.

4.              In most of the state reports the Committee has examined so far, the concepts of mental and legal capacity have been conflated so that where an individual is thought to have impaired decision-making skills, often because of a cognitive or psychosocial disability, her legal capacity to make a particular decision is consequentially removed. This can be done simply based on the diagnosis of a disability (status approach), or where an individual makes a decision that is thought to have negative consequences (outcome approach), or where an individual’s decision-making skills are thought to be deficient (functional approach). In all these approaches, an individual’s disability and or decision-making skills are accepted as a legitimate basis for denying her legal capacity and lowering her status as a person before the law. Article 12 does not permit this discriminatory denial of legal capacity and instead requires that support be provided for the exercise of legal capacity.

                         Article 12 (3)

5.              Article 12(3) recognizes the right of persons with disabilities to support for the exercise of legal capacity. States must refrain from denying legal capacity, and instead must provide access to the support that may be necessary to make decisions that have legal effect.

Support for the exercise of legal capacity must respect the rights, will and preferences of persons with disabilities and should never amount to substitute decision-making. Article 12(3) does not specify the form of assistance that must be provided. ‘Support’ is a broad term capable of encompassing both informal and formal support arrangements, and arrangements of varying type and intensity. For example, persons with disabilities may choose one or more trusted support persons to assist them in exercising their legal capacity for various types of decisions, or may use other forms of support, such as peer support, advocacy (including self advocacy support), or assistance in communication.”

Even though this position runs contrary to the Mental Capacity Act, the approach taken by the CRPD Committee also means that DE should not have been denied legal capacity to consent to the medical procedure of the sterilisation. This would have rendered useless to decide whether the sterilisation should have been authorised, because undergoing the sterilisation would have reflected the wishes of DE, as having legal capacity consent to it.

My second critique of the case deals with the issue of best interests determination. I argue that best interests can never be the sole justification for an interference with the human rights of a person with intellectual disability. On the contrary, the human rights reasoning under the Human Rights and the ECHR is much more developed. Below is the relevant table from my presentation slides to illustrate this point.

Infringement in Art. 8 ECHR

Sterilisation

Is justified when

Is justified because

It is prescribed by law

The MCA allows it in the best interests of the person

It serves a legitimate aim

So that the person can continue to have sexual contact without risk of pregnancy

It is necessary in a democratic society

(Proportionality)

The sterilisation is proportional to the aim to be achieved

Are the elements satisfied?

Sterilisation is disproportionate

My argument is that the best interests cannot trump this human rights reasoning. Any decision made on behalf of a person (deemed incapacitated) must be in his/her best interests, as well as satisfy the other requirements under European Human Rights Law. In the case of DE, the sterilisation is disproportionate, because it is an invasive, (very likely) irreversible medical procedure which is authorised so that DE can essentially have unprotected sex with his sexual partner, without the risk of pregnancy. No serious harm to both DE and his sexual partner may arise from this unwanted pregnancy. Can this be a legitimate aim and a proportionate interference, when the same result could perhaps be achieved through additional sexual training for DE?

One of the many insightful comments in the discussion was precisely the fact that DE had responded well to previous sexual training, so there was no reason not to continue to provide this educational support as the least restrictive alternative to DE’s bodily integrity.

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