Julian Sheather: Making health decisions in advance – how best to avoid your worst nightmare?

On coming into force, the Mental Capacity Act (MCA), by deftly drawing together common law and permitting, via new powers of attorney, the nomination of substitute health decision makers, looked set to move practice in anticipatory decision making into a new era. The MCA is certainly a good act. It is supported by principles, focuses on the interests of the incapacitated adult, and creates obligations on would be decision makers to ensure adults exercise any residual capacity. That it would also make unambiguously legible the law relating to advance directives and permit the delegation of decision making powers in health and welfare suggested it would also provide welcome additional support to patient autonomy. Our decisions, it made clear, will be able to reach beyond our declining capacity.

I was at a symposium recently in which this optimistic picture was tested very nearly to destruction. At the centre of the symposium was a single patient and, overused as the phrase is, her “patient journey.” Let us call her P. P was presented to us in impassioned mid-life. She was a traveller, a lover of dangerous sports, a “free spirit,” a radical, anti-establishment – anti the medical establishment – and with a lifelong terror of being incapacitated, of being dependent on medical care. All of this her big, noisy, loving, and opinionated family knew to be true of her. And then she was very badly brain-injured in a car crash. She was admitted to hospital. Everything was thrown at her. She survived. For a while she was in a vegetative state. Although the family were adamant they knew her wishes, she had not made any advance directive, nor had she nominated an attorney. Fed artificially she was otherwise free of intrusive treatment. On application to the Court of Protection, artificial nutrition and hydration can be removed from a patient in a persistent vegetative state, but long before any such state had developed, she improved slightly and was diagnosed as being in a minimally conscious state. The law relating to withdrawing treatment from patients in such a state is far from clear. This was several years ago and she remains minimally conscious.

For the family, to the horror of the original injuries was added the ongoing trauma of her survival in a state she would so clearly have abhorred. The symposium, put together by her sister, a professor of communications, set about asking how it was that P’s worst nightmares were realised and what, if anything, could be learnt from it.

Ordinarily, decisions made under the MCA have to be made in the incapacitated adult’s “best interests.” Unlike in the US, the “best interests” test is not a matter of “substituted judgment,” nor about identifying as clearly as possible what the adult would have wanted and implementing it. It is designed instead to be as objective a test as possible, taking into consideration all the relevant factors of the case. Yes there would be elements of substituted judgment – what the adult would have wanted is clearly a relevant factor – but it need not be determinative. According to the clinicians at the symposium, many of the most important medical decisions made about brain-injured patients are made very early on, often long before a reasonable prognosis can be made. In many cases – certainly in P’s case – at the time when the important decisions were being made, decisions that would have a direct impact on her survival, it was simply not possible to tell whether she would walk out of the hospital or remain forever in a coma. In these circumstances a best interests decision would support intervention. And any attorney that P may have appointed would be equally bound by P’s best interests. It is highly unlikely, however familiar with the incapacitated adult’s wishes, that an attorney could lawfully refuse treatment in such a context.
While of course it would be possible, in theory, to draft an advance directive refusing medical treatment of any kind following brain injury, such an approach is fraught with difficulty. In an emergency there is unlikely to be time to establish the existence of a directive. Again the presumption would be overwhelmingly in favour of intervention. Also, as some of the clinicians present pointed out, if the brain injury was remediable, there was always the possibility that the individual could return to full health. Perversely, in such a circumstance, by prohibiting intervention, an advance directive could bring about precisely the circumstances it was designed to avoid.
Other factors complicated the case. P’s family was principled, opinionated, and articulate. It is terribly easy to see how such a family could be labelled “difficult.” Communication between the family and health professionals broke down. Trust evaporated on both sides. P’s lover, grieving, wanted her kept alive. How easy was it to identify whether those close to her were articulating P’s own world view or were speaking out of the confusions of their own grief ? Communication, if it ever needed reiterating, is at the heart of good medical care.
The law describes artificial nutrition and hydration as medical treatment. Because treatment that is not providing a benefit can lawfully be removed, withdrawing it in circumstances where it will inevitably lead to death can be defensible in law. The intention is not to kill but to withdraw treatment that is without benefit. The intellectual difficulties in this position have been extensively explored. A consultant in rehabilitative medicine however explained to the symposium the physical reality of withdrawing food and fluid from a patient in a minimally conscious state. To me, as a non-clinician, it made uncomfortable listening. It is a long way from an easy death.
One of the questions that the symposium returned to again and again was how the end of a life could be in keeping with the living of it. It is an aesthetic question in its way, a question of shape or fit: how can the close of a life cohere with its overall narrative? Few of us will get to choose the time and the manner of our departure. A grand or a peaceful death, a quiet death among loved ones, a time of reconciliation and acceptance – there are no guarantees. But for her sister, P’s tragedy lay not just in the accident that very nearly ended her life. It was also that afterwards the values that had animated it could play no part in it.
I came out of the symposium heavy with questions, questions about anticipatory decision making, about how we might try best to shape our lives after we have lost the capacity to guide it. But I also came out with a deepened respect, a respect both for the complexity of life and for the challenges presented to those who have to decide what a good end to life might be on behalf of someone who has not the resources to describe it.

Julian Sheather is ethics manager, BMA. The views he expresses in his blog posts are entirely his own.