A friend has written to me as a result of reading my blogs on the Liverpool Care Pathway. She draws attention to another aspect of this debate which concerns not the actions of doctors but the behaviour of relatives. She writes, “You have rightly highlighted the danger of sick and elderly patients being placed on the Pathway without their knowledge or consent and against the relatives’ wishes, and even when they aren’t actually dying. But there is another danger too, possibly more common than you would think: viz. when the patient is comatose but revivable – and yet their relatives are insistent on as speedy an end as possible.”
My friend continues: “Our youngest daughter is a nurse. She was very keen on the LCP when she took up her first hospital job. When a patient was thought to be in extremis, the ward sisters called in a team of specialist nurses to carry out a thorough assessment of the patient’s condition. If these specialists recommended continuance of treatment, that is what the doctors did. If they confirmed that death was imminent, the patient was placed on the LCP and given the best nursing care possible. As my daughter explained, nurses are there to be a “line of defence” around the patient.
“However, she witnessed a case where this defence was battered down by a patient’s angry and distressed relatives, who were convinced that the treatment their elderly mother was being given was causing her pain and needlessly prolonging her suffering. The specialist nurses were called in and concluded that she was not dying and could very well get better, and advised the doctors of this. But during the night the shift changed and another doctor took over; and the relatives badgered him to withdraw all medication immediately. He did so, with the result that the elderly mother’s health was irreversibly damaged by the following day. When the original nurses came back on duty they were deeply upset by what had happened and sought explanations. But by then it was too late to save the elderly lady and she died the next day. My daughter said it was a real eye-opener on what can go wrong with the LCP when relatives manage to get round the defensive line of nurses in this way. And she remains adamant that the LCP, when implemented properly and as intended, is infinitely better for patients and staff than the previous haphazard practices.”
This letter teaches one that it isn’t always the doctors or nurses who are the chief culprits when it comes to these medical scenarios. It is a minefield – and not just because there are disputes between doctors, patients and relatives but because of conflicting views about what a life is worth. I read my friend’s letter before reading an article in the Telegraph last Saturday in which the Booker prize-winning novelist, Julian Barnes, was giving an interview. In it he stated baldly that “I’ve always been in favour of suicide. I always thought it was every human’s right to kill yourself if you want to and I think it’s terrible that people have to go to Switzerland and have their relatives threatened with lawsuits or criminal prosecution when they are obviously of sound mind but terrifyingly unsound body.”
Barnes added that previous generations of doctors had a different approach: “Doctors used to knock people off all the time.” He went on to say he supported the LCP – giving the impression that he sees it as a quick and convenient way to despatch a person who has become “terrifyingly unsound” in body rather than as my friend’s daughter describes it: a caring way to manage the actual dying process. Barnes’ views do not surprise; he has some form in this area. His book Nothing to be Frightened Of describes the bleak, almost perfunctory, deaths of his parents, who were atheists like himself. He wrote in that book, “For me, death is the one appalling fact which defines life.” His 2011 novel, The Sense of an Ending, which won the Booker prize, is centred on a mysterious suicide.
We all ponder death, our own and those of our friends and relatives. For people like Barnes it is something to be frightened of because it means final extinction, an often undignified departure from the only life there is – a life that is thus clung to desperately until the moment one decides to knock off or to be knocked off; when it’s no longer worth the candle. For Christians, as I have written in other blogs, death is not about discarding “a terrifyingly unsound body” for an abyss of nothingness; it is the gateway to eternity, a sacred transition that is accompanied by consoling, ancient, hallowed rites of passage.
Fr Ronald Rolheiser’s column in the Herald last week offers a wise and reflective rebuttal of Barnes’s dreary ruminations. Citing a book on aging by James Hillman entitled The Force of Character and Lasting Life, he writes that “The last years of our lives are meant to mellow the soul and most everything inside our biology conspires together to ensure this happens. The soul must be properly aged before it leaves. It’s a huge mistake to read the signs of aging as indications of dying rather than as initiations into another way of life. Each physical diminishment is designed to mature the soul.” I like the way this makes the frailties of age sound like the maturation process of fine wine.
I just hope Barnes will come across this book and learn from it before he gets to the despairing stage of wanting to be knocked off himself.