Capacity, consent, and reproductive decision-making
Recent cases brought to the Clinical Ethics Forum reminded me about the sometimes tricky relationship between the law and morality and the tension between what is the case and what should be the case…an idea captured aptly by Charles Dickens in Oliver Twist as ‘the law is an ass.’ It was not a typical clinical ethics forum because unusually, there was very little disagreement about what the right thing to do was in the cases. Instead, the cases showcased the importance of considering the broader context within which clinical decisions are made.
The discussion centred on two teenaged women who were in the early stages of pregnancy. Person X had a serious physical disability and person Y, a serious intellectual impairment. Both were significantly dependent on their caregivers, who had accompanied them to their appointment with the clinicians. At the respective appointments, the option of a termination of pregnancy was discussed with the young women and their carers.
In South Africa, persons have the right to decide on medical matters affecting them from the age of 12. That is, in the absence of a lack of capacity, for patients 12 years or older, consent is required from them for their healthcare treatment, including termination of pregnancy. Parental consent in contrast, is not required. Person X, who was 16, had expressed a desire to continue with the pregnancy whereas her mother, on whom she depended physically, financially, and emotionally, was strongly opposed to continuation. In the case of person Y, it was unclear as to how much the 19-year-old understood the situation given her intellectual capacity (considered to be at the level of a 5-year-old). She seemed to be aware that she was pregnant, but had little comprehension of what being pregnant entailed and presented as extremely anxious when the issues of labour and birth were raised. While her parents did express a concern about the possibility of the child inheriting a similar intellectual disability, they were against terminating the pregnancy. Given person Y’s lack of capacity to consent, her parents were in the process of finalising their roles as her legal guardians so that they could become her surrogate decision-makers.
What was perhaps most interesting about the discussions that followed from the presentations of the cases was how little disagreement there was about the best course of action in both cases. That is, despite the patients’ wishes to continue the pregnancies, there was widespread agreement that termination was the right decision. Consideration was given to the circumstances of both women as well as the issue of whether the respective children would inherit the mothers’ disabilities. The effects of a completed pregnancy on the women and their caregivers - physical, psychological, and financial, seemed more important: a case of beneficence and non-maleficence trumping autonomy.
So from a discussion regarding the question of whether either or both women could consent to a termination, things moved quickly to the question of whether either or both of them could consent to sex – and the implications thereof.
And it was this issue – of what capacity to consent does – and ought to – look like, that seemed to be the real source of distress. Under South African law, person X was not legally able to consent to sex at the time of falling pregnant as she was under 16. As such, the participants in the forum were very concerned about whether they had a duty to report that a sexual assault had taken place.
In the case of Person Y, who was legally an adult at the time of consultation, her intellectual impairment means she does not meet the requirements of being able to consent to sex. In other words, according to the law, she can never have consensual sex. But denying her the chance to fulfil her legitimate and real sexual needs on the basis of her intellectual disability seemed to many of us very unfair. Many of the clinicians felt she ought to be offered contraception so as to prevent a future pregnancy.
The issue of consent seemed on the one hand, to be too low a bar if we want to protect vulnerable people from acting against their own interests. On the other, it seemed to be too high a bar if we want to respect vulnerable people’s right to have their legitimate interests met.
While the session did not end neatly with a clear resolution, it served I think to remind us of the messiness of human life and the pressure on those whose job it is to care for us. As Svantesson et al (2017, p213) point out, ‘there is widespread international consensus that healthcare professionals need support in managing ethical issues in the complexity of everyday clinical practice, with the overarching goal of improving quality of care for the patient.’ When the ethical issue at hand involves termination of pregnancy decisions, the need for support is even greater, given the sensitivity of the topic and the likelihood of it causing distress to those dealing with it.
Being able to sit with the discomfort that arises in dealing with this messiness is important. Being able to talk about it in a safe and supportive space is essential. We hope that the Clinical Ethics Forum provides that space.