This post looks at the strange juxtaposition of three things I came across in the past hour. Firstly, a bioethics post on some important new light on the use of surrogate decision-making – when you are unconscious and another nominated person has to make a life-and-death decision for you. Secondly, a post from one of our guest blogs, The Good Funeral Guide, that features a beautiful clip from a Leonard Cohen concert with some pointed lyrics. Thirdly, how art doesn’t always provide answers but it maybe helps us find our own.
The question of surrogates, now more common in America (where their authority can be considerable and almost routine) than the UK, is one that worried me during my first research connected with this movement which was into living wills. The idea seems simple enough – someone close to you speaks on your behalf when you are no longer able to; but the more I looked into it, and the more studies I examined, the evidence that surrogates in practice made decisions that the patient wanted was scarce. This was because patient and surrogate generally believed in the same basic principle, of not prolonging life unnecessarily, but when it came to specific instances, with all the medical uncertainties, research suggested that surrogates were much worse at second-guessing than they thought.
Now another big study has highlighted a further problem: when you have to ask someone else, extra time becomes a factor, time you maybe don’t have, the time taken to find the surrogate quickly and for him or her to make the decision. The study, as did the studies on surrogates and living wills, suggests that DNR surrogate communication and decision making is often of poor quality. One of the main advantages of having surrogate decision makers is to make the process easier – but the theory doesn’t seem to work in practice. Say the authors, ” . . . there is evidence that the communication and decisionmaking process is even more difficult when patients are unable to participate and physicians must discuss the decision with a surrogate.” Often it involves high degrees of stress for the family members concerned.
Making a life and death decision for someone else can be a trying experience and one that one has to live with forever. The authors suggest that:
“Research and policy addressing DNR decision-making
in the hospital should account for the fact that someone
other than the patient makes the majority of these decisions
and should be guided by ethical theory on surrogate decision-
making rather than models of decision-making
that assume an autonomous patient. The communication
and decision-making process need to take into account the
wishes and needs of family members and should be guided
by best practices in surrogate communication.”
Supporters in the ‘right-to-die’ movement are very keen generally on stressing autonomy – rightly so – but what does it mean to be autonomous? And how is that autonomy transferred to a surrogate? Rather less perfectly than models of autonomy suggest, it seems. For instance, should the surrogate decide as if he or she were in the patient’s shoes (‘substituted judgement test’)? What if the medical scenario is complicated and the patient’s wishes are not properly known? Then good practice calls for the ‘best interests’ test – a more impersonal standard – one that ‘most reasonable persons’ would choose.
The law in England & Wales – and in Scotland too – has trod warily with surrogate decisionmaking, giving proxies only limited powers in certain situations. But there is much that could be done on improving the communication process – especially when surrogates are under emotional stress – to ascertain what standards are in fact being used to make a decision.
Sometimes – quite often in fact – there is no ‘easy answer.’ We look to prior discussions, careful analysis and the guidance of the law and professions to help us. But at length we have to ask ourselves what do we feel, what is the best decision we are able to reach at that moment in time? Time for mulling it over may be in short supply. Perhaps we are guided by religion, by poetry, by long-held convictions. Most of all, perhaps we need to see every angle so we will have no regrets.
This is where the arts can sometimes, surprisingly, help us. Poetry is not valued highly in our day-to-day affairs, so why is it so often used at funerals and other important occasions – when prose simply can’t sum up what we feel? Cohen‘s song, Dance me to the End of Love has many resonances about the ‘end’ – whatever that might be. It might mean different things to different people. What is our vision, not just of ‘The End’ but of a beautiful ending? An ending worthy of poetry, of orisons, of a story that will bring tears of joy?
(links for further reading scattered throughout this blog)