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Negotiating the will to live

Stephen White

Driving to a meeting recently I was brought low by a radio program about dementia. The story, told by her family and her medical team, was of the remainder of the life of a bubbly and vivacious woman who was diagnosed with dementia at the age of 80. As her condition worsened she became increasingly uncommunicative and aggressive, and finally died some 13 years later.

 One element of the unfolding story was unusual. In middle age she had made a living will. This is a document which enables a person ‘to indicate that they wish to refuse certain types of medical treatment, should they be unable to make or communicate a decision about their treatment in the future’ (  definition from Age UK). Although there are standard forms which can be used, many living wills are problematic for relatives and doctors because they are not clear about the principle driving the individual’s preference in a specific situation. This is because that particular situation was not envisaged at the time the living will was written, and because the principle (for example, that they were not to become a burden to their family or to the healthcare providers, or that they did not want to live in a vegetative state or with chronic pain) was unclear.

 In this case the lady had had a heart pace-maker fitted when she was in her early 80’s. Pace-makers are driven by batteries which have a 10 year life span and can be replaced in a simple procedure which is performed under local anesthetic. As the time for replacement drew close the family and the doctors had to decide what to do; because of the aggressive nature of her dementia she was likely to resist the operation physically and strenuously, putting both herself and the medical team in danger. Apparently a general anesthetic was not an option. So the question arose - would she in principle have wanted this procedure to be performed. They consulted her living will, which simply said that she did not want her life to be unnecessarily prolonged.  After much discussion the family and the medical team decided not to do the operation. They expected the battery to fail soon after – in fact it lasted for another 15 months but eventually the pace-maker stopped working and the lady died.

The moral and ethical dilemmas this story illustrates are many and profound. One dilemma might have arisen if the doctors and the family members had a difference of opinion on the meaning of this ladies’ living will. Imagine if the family believed that she in principle would have wanted the operation to replace the batteries, and the doctors had the contrary review. Or vice versa. Is this a conflict resolvable through negotiation?

We know in general terms that principles cannot be negotiated. For example, someone who believes fundamentally that capital punishment is wrong in principle will not be susceptible to change their view in return for any amount of money, or for that matter any other enticement. We also know that it is impossible to negotiate an opinion, because an opinion is a subjective view, unverifiable at a moment in time. For example, if my opinion is that the Yankees are a better baseball team than the Red Socks, there is nothing you can offer me which will change my mind. I might take your inducement and say I have changed my mind, but I will be lying! I will also be unaffected by persuasive facts – I will not change my mind even if the two teams play and the Red Socks win!

So back to the living will and a double-whammy question - is it possible to negotiate an opinion about someone else’s principle? I think the answer is Yes, and I had such an experience some years ago.

At the start of a negotiation training course which I was running in a local hotel, I talked to the participants about the routine house rules; how to evacuate in case of fire, where the rest room facilities were, and the no smoking policy. At that time smoking inside a public building like a hotel was not illegal although it was generally frowned upon and most participants preferred a No Smoking environment.

One of the participants protested. He explained that he personally did not smoke, but that was not the point. He worked for a tobacco company, and although he did not know for sure, his opinion was that his employer would want him to resist any ‘No Smoking’ rule as a matter of principle, except where it was enforced by law.

We resolved the matter amicably. Together with the other participants he agreed that in principle anyone was at liberty to smoke in the training room, as long as no-one actually did.

So in the same way if the doctors’ opinion was that the old lady would have wanted the operation in principle, but the family believed the opposite, they might have resolved the stand-off by agreeing that they should do the operation, but only if it was possible to find a way of guaranteeing no danger to either patient or medical team; which in real terms means never.

Let us hope we never have to face such problems, either as patient or relative.

Stephen White

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