Guest Post: Matthé Scholten and Jakov Gather
When a patient is incompetent to make a particular treatment decision due to impaired decision-making capacity, it is common practice that the decision is based on an advance directive or made by a substitute decision-maker on behalf of the patient. The substitute decision-maker’s task is to choose the treatment option that the patient would have chosen had he or she been competent.
Recent reports prepared by the United Nations (UN) strongly repudiate this practice. According to these reports, article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) states that persons with mental disabilities may on no account be denied the right to make their own treatment decisions.
Although some have responded critically to CRPD article 12, another type of response is in fact much more common. Perhaps surprisingly, many policy makers and medical associations seem to embrace CRPD article 12. It is not always a warm embrace, though. Policy makers and medical associations often endorse the article only after interpreting it in such a way that it does not challenge current medical practice and existing guardianship and mental health laws. Another checklist or training might be required here and there, but in principle all is fine, the message seems to be.
This is an intriguing response and several explanations can be offered for it. People may be hesitant to admit that current medical practice and mental health legislation is not compliant with a human rights document for fear of public repercussions. The response may also be a manifestation of the so-called confirmation bias, that is, our tendency to interpret new information in a way that confirms our own pre-existing assumptions. Last but not least, it cannot be ruled out that the response is part of a cunning political strategy to take the wind out of the sails of the disability movement.
Whatever the underlying reasons, we believe that the response amounts to an undesirable type of legal gymnastics. Though perhaps understandable, the response reduces what could have been a constructive debate about the emancipation of persons with mental disabilities to a philological dispute about the meaning of words. Thereby, it obstructs processes leading to needful reform.
We choose a different strategy in our article. We follow the interpretation of CRPD article 12 proposed by the Committee on the Rights of Persons with Disabilities and clearly state where our disagreements lie. While we wholeheartedly embrace the CRPD’s fundamental aims, we do not believe that the provisions of article 12 are conducive to the realization of these aims. In the article, we identify six adverse consequences of CRPD article 12 for persons with mental disabilities. We argue that an implementation of the article as envisioned by the Committee,
- impairs the ability of persons with mental disabilities to live an autonomous life;
- sets back their wellbeing;
- increases the risk of undue influence;
- entails an unfair distribution of responsibility for treatment decisions;
- fails to provide criteria for the allocation of decision-support; and
- significantly reduces the possibilities for advance care planning
We also point to an alternative way forward and we propose to call it “the combined supported decision-making model.” This model combines supported decision-making with competence assessment. In our view, it is sometimes permissible to deny persons with mental disabilities the right to make their own treatment decisions. However, on the combined supported decision-making model, doing so is permissible only if a patient’s functional decision-making capacity is substantially impaired and all resources of supported decision-making have been exhausted.
The combined supported decision-making model actually sets a quite radical agenda for reform. Thus far only a few countries have provisions for decision-support and still less countries make the necessary financial resources available; guardianship and mental health laws in many countries deny persons the right to make treatment decisions based on the presence of a ‘mental disorder’ or ‘mental disability’ rather than on a substantial impairment of functional decision-making capacity; and even in jurisdictions that specify functional criteria for competence, professionals often fail to apply the adequate criteria when assessing patients’ competence. There is a lot of work that needs to be done.
We hope that our article will contribute to a constructive debate that will lead to legal reform and improvements in clinical practice, paving the way for the full emancipation of persons with mental disabilities.
Further reading
Bhailís C de, Flynn E. 2017. Recognising legal capacity: Commentary and analysis of Article 12 CRPD. Int J Law Context 2017;13:6-21. doi:10.1017/S174455231600046X.
The Small Places. Blog written by Lucy Series.
United Nations. Committee on the Rights of Persons with Disabilities, General Comment No.1: Equal recognition before the law. CRPD/C/GC/1.
United Nations. Convention on the Rights of Persons with Disabilities.
United Nations. Office of the High Commissioner for Human Rights. Mental health and human rights. A/HRC/34/32.
United Nations. Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. A/HRC/35/21.