Cases concerning ethical and moral decision making always attract widespread interest. In our recent Medical Law Group seminar in Cambridge – Best Interests - Planning Ahead – we explored many of the reasons for this and how decision-making could become less committee-led.
When we focus on those in society who lack the mental capacity to make medical treatment decisions for themselves there are widespread calls to understand their situation, empathise, sympathise and share thoughts about what should be done for them or to them. This interest is a benevolence borne out of the desire to help and care. We all have an opinion on what is in those patients’ best interests but of course we rarely know exactly what they would want and, sadly very few really do.
Of course, the private suffering and heartache of others is profoundly intimate and would ideally remain within a closed circle of few – the patient, their clinicians and loved ones.
That it is not, is because that patient sadly lacks capacity and there is a lack of consensus about what is in their best interests. That is when the lives of patients in those circumstances might reach the courts and into the public discourse. In the world of personal choice and patient centric decision making, when a patient lacks capacity, the process to achieve an individualised subjective best interests decision involves a great number of people to get there, including in some circumstances recourse to the courts. That is the case even though everyone involved in these decisions painstakingly focuses on what the patient would want and what they would decide if they had the mental capacity to do so.
That the input of so many is required is often because there is uncertainty or perhaps a lack of consensus as to what the patient would decide if they could do so. The best way to understand a patient’s best interests and to facilitate patient autonomy requires a patient – before they in fact become a patient – letting the future clinicians and others know their wishes, values and feelings. Then, there will be less doubt and more consensus about their best interests and less scrutiny required over their best interests. Where patients communicate their decisions ahead of time, when they have capacity to do so, clinicians have confidence the treatment they are providing, or not providing, is what the patient would ask for.
There are many aspects of forward planning, not least in writing advance decisions to refuse treatment; advanced care planning; the ReSPECT process and how the Court of Protection and Family Division of the High Court interpret best interests.
Advanced planning is fraught with difficulty for anyone and everyone concerned. Very few people can know what their wishes will be at a time they are unable to communicate them. We may have views on what we believe would be our approach but very few of us can truly know what it means to be at a point where we need to make a life or death decision. What would we tolerate and at what cost?
Even if we may not be able to anticipate our specific wishes were we to reach a certain point in our journey as patients, most of us do have an understanding of our values and feelings, which play a very integral part in a future decision maker’s understanding of a patient’s best interests. If we are at least able to communicate those values and feelings in advance, that will place the decision maker in a far more secure position, when having to decide what they believe is in a patient’s best interests.
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