By Alex Ruck Keene, 11th November 2020
Editorial Note: We invited Alex Ruck Keene to contribute a blog about advance decisions on intimacy after widespread engagement with our blog post about a hearing largely devoted to hearing expert evidence on P’s capacity to engage in sexual relations. Advance consent in the context of psychiatric treatment is explored in another OJCOP blog by Magdalena Furgalska (click here).
Individuals with impaired decision-making capacity who wish to express themselves sexually are caught between two competing legal and ethical policies. The first seeks to uphold the vital importance of consent to sexual activity; the second seeks to uphold the right for such individuals to respect to autonomy, privacy and the enjoyment of relationships on an equal basis with others.
The legal framework relating to capacity and sexual relations is complex, not least because it involves both the criminal sphere (in England & Wales, the Sexual Offences Act 2003) and the civil sphere (the Mental Capacity Act 2005). The English courts have returned repeatedly to the question of what it is to have decision-making capacity in relation to sexual relations, most recently in the case of A Local Authority v JB  EWCA Civ 735.
As Sir Mark Hedley identified in CH v A Metropolitan Council  EWCOP 12:
Society’s entirely proper concern to protect those who are particularly vulnerable may lead to surprising, perhaps even unforeseen consequences. Such, however, may be the price of protection for all.
The consequences appear to be particularly surprising in the context of those with dementia, who may previously have enjoyed sexual activity with a partner but now cannot be said (on even the most expansive approach) to have capacity to engage in sexual relations. At that point, very difficult questions arise as to whether they should be stopped from doing so as to prevent their partner from being exposed to a risk of prosecution, or (where relevant) to stop support workers or others from also being expose to such a risk.
In an article shortly to be published in The Gerontologist, a proposal is advanced for an “advance decision on intimacy” to enable people who are living with dementia to make decisions about how they would wish to express their sexuality at a material time in future when they would have lost capacity to consent to such acts. The proposal builds on recognised models of advance decision-making contained within the Mental Capacity Act 2005 to tease out how such an instrument could be created, what conditions might be required for it to be valid, and what complexities it gives rise to.
From ‘stress-testing’ the proposal in different settings, it is clear that the proposal gives rise to strong feelings – both acknowledgement of the potential benefits, and of the possible downsides. It also poses challenges to conceptions of what we are willing to empower people to decide about in advance, and about how expressions of sexual preference could be ‘housed’ within such decisions where they may clash with the views of others around the person about what they consider to be acceptable. At a minimum, though, what is currently a thought-experiment may help focus attention on whether it is really necessary for all those living with dementia to pay the price identified by Sir Mark Hedley, or whether there is another way in which to achieve the same goals.
Alex Ruck Keene has been in practice at 39 Essex Chambers in London since 2003 and specialises in the field of mental capacity and mental health law. He blogs regularly here: https://www.mentalcapacitylawandpolicy.org.uk
 Sorinmade, O., Ruck Keene, A., & Peisah, C. (2020). Dementia, Sexuality and the Law: The Case for Advance Decisions on Intimacy. The Gerontologist.
Photo by Artyom Kabajev on Unsplash
One thought on “Advance decisions on intimacy”
I read this with interest. I attended a hearing recently, which was partly about this issue, and contributed to the blog When Expert Evidence Fails. I’m looking forward to reading The Gerontologist article. In dementia care, the emphasis is always on protecting the person from harm. Sexual intimacy is such a personal, felt-sense aspect of one’s life. When do people, for who, there is not a question of capacity, make a clinical, thought-through decision about having sex? Professionals in care roles, myself included, struggle with the balancing act of enabling a person with dementia’s wishes and protecting them from harm, once they are deemed to lose capacity to make certain decisions.
It has been said to me: “how can I know what I would want for myself ahead of time?”. I’ve thought about that a lot. Perhaps we cannot “know”; though we might know ourselves well-enough to give a guide to our future care, should we lose capacity to guide others at the time. Why shouldn’t people who lose capacity for a decision be allowed the same richness of life, which will always comes with some risk? Maybe it’s something about developing a means of giving advance thought and guidance to how we want people to balance risk for us in future. Relationships in life are steeped in risk and in seeking to eliminate risk in care settings I often think we can drain the colour – and therefore meaning – out of people’s lives. I also think value judgements are at play in this area. Many people don’t like the idea of older people having sex; which speaks to our cultural attitudes to ageing and fears of our own later life. As a culture, especially in relation to people with dementia, it’s as if we have collectively decided just to not go there. The legal framework supports this position, even though, as you say: “The consequences appear to be particularly surprising in the context of those with dementia“. I wonder if the consequences, overall, find a home with how uncomfortable we feel about older people having sex? The conversation can then be about protection (obviously a good thing), not about our our own discomfort and ageism.
So then people, like Barbara in the blog, can experience others preventing them living the life they consistently express they would like to live. She expressed – through her actions and what she said – a desire to be with and be intimate with one particular person in the place where she lived. Her expressions did not appear random or contradictory over time. It felt so sad that we do not have a system and legal framework for others to help people like Barbara live as they wish, rather than “protect” her, in an attempt to eliminate risk (and maybe eliminate their discomfort into the bargain). Such an important conversation and thank you for being willing to explore this area that, as you say, “gives rise to strong feelings”.
Claire Martin is an NHS Psychologist working with older people. She tweets @DocCMartin
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