Patients are increasingly aware that medical choices are limited despite the plethora of information available that ought to inform our consent. This plays out most starkly in issues of organ donation and allocation. But when it comes to decision-making, the issue of what we should and shouldn’t be told has also been playing out in the courts.
In a recent article I discussed Montgomery (AP) v Lanarkshire Health Board – a case brought before the Supreme Court by a mother who contended that her obstetrician was legally negligent in failing to warn of risks related to her pregnancy.
While the General Medical Council (GMC) provides guidance on consent for the medical profession, the test for negligent non-disclosure of risk at the time of Montgomery’s appeal was based on another case from some 30 years earlier: Sidaway v Bethlem Royal Hospital Governors. This case established that while medical professionals have a duty to give patients enough information to help them come to a decision, it is not necessary to warn them of every risk.
The Supreme Court unanimously allowed Montgomery’s appeal. She is now expected to receive around £5m in damages. The outcome of the case finally heralds a more patient-focused law of consent and it was noted by Judge Hale that Montgomery had provided the court with the opportunity to confirm the “confident statement” that the need for informed consent is part of English and Scottish law. Two other judges sitting on the Montgomery case found:
The paradigm of the doctor-patient relationship implicit in the speeches in that [Sidaway] case has ceased to reflect reality. It would be a mistake to view patients as uninformed, incapable of understanding medical matters, or wholly dependent on information from doctors.
The law should now be aligned to how most of us likely see the idea of consent. That is whether the medical professional has enabled us, the patients, to make a meaningful choice about a medical procedure. And respect for patient autonomy in the law is vital. It highlights the need to strike the right balance between placing trust in the medical profession (as the judiciary should) and recognising a patient’s right to make a substantially informed and voluntary decision about matters that most immediately and personally affect them.
Ideal autonomy versus reality
When we normally think of consent it is a one-off event: the doctor gives the information and the patient is attentive, ready to ask questions, and quickly and comprehensively grasps the implications of a proposed course of treatment. This would be ideal and something to aspire towards, but the reality is different.
The GMC recognises that consent is a process – decisions are made by medical professionals and patients in an ongoing partnership. But this partnership is potentially hindered by numerous complexities. This may involve issues of how capable a patient is in making an autonomous choice – whether they fully grasp the information being given – and problems of false belief, or mere non-acceptance of information. Patients might simply be afraid to hear the full truth.
So, it’s all well and good promoting the principle of respect for autonomy in the law. But that, by itself, is nowhere near sufficient. If patients are really going to make the most of the refocusing of the medical professional’s legal standard of care, then we too must bring something to the patient-professional relationship. Greater attention must be paid to the potential complications above, by medical professionals and patients alike.
Technology, time and space
As a result of Montgomery, patients should now be more informed than ever. But more information does not equal more understanding and ultimately more autonomy. Indeed, the issue of understanding information isn’t now just confined to the doctor/patient relationship. For example, new technology is giving rise to further questions of autonomous provision of health data.
The most recent and stark illustration of this is Apple’s release of a series of health monitoring apps, collectively known as ResearchKit. These allow patients to enrol in medical research studies at their choosing, using their iPhone or Apple Watch. Patients can collect data relating to diabetes, Parkinson’s disease and asthma. But understanding how this information will be used is vital to the consent process if the handing over of data is to be truly autonomous. The point is, regardless of physical or data risk, simply having more information available to us is not enough.
What do you value most?
It is here we need to realise as patients that real understanding takes place against a network of personal convictions, values and outlooks that we need to reflect on and and consider – and acknowledge that all of this may also lead to uncertainty. We may be uncertain, for example, about how our values weigh up in relation to one another. We may be uncertain as to whether our convictions would yield in particularly grave circumstances. We might even be uncertain about the long-term effects of a proposed treatment option, relative to the values we hold most dear to our lives.
When it comes to real patient autonomy, others must respect our ability to express our character-values in the decisions that we make and we must respect it ourselves. To paraphrase Ronald Dworkin: at a minimum, we as patients cannot be allowed to think that we have justification as well as mere selfishness on our side. We can all take steps in the right direction to make the patient-professional relationship better. Only then will we be able to make the most of the Montgomery case. The medical profession can no longer solely decide what we should or shouldn’t be told in law. But we, as patients, also need to take the initiative ourselves.