Humanist Perspectives: issue 152: She Didn't Deserve This

She Didn’t Deserve This
by Polly Toynbee

‘Where’s Harold Shipman when you want him?’ my mother would say. But the law denied her a pain-free death.[Harold Shipman was the notorious British physician who took the lives of many of his elderly patients.]

They lie to you about birth and death. Modern medical fashions soothe the unsuspecting into believing the good birth and the good death are simply a matter of getting the right currently modish care — ‘natural’ entry into the world, eased ‘naturally’ out of it at the end with the right palliation. But these comforting myths are misleading and sometimes pernicious.

In the beginning the all-powerful natural childbirth lobby deludes first-time mothers into believing drug-free birth is a painless joy, as misdescribed in natural childbirth classes. The cult of the natural deliberately frightens women away from the drugs and modern medical techniques that can make birth safely pain-free.

Now I discover that they lie to you about death, too. The modern myth is that these days generous and carefully calibrated doses of morphine administered by the best palliative care teams will make final departure a gentle slipping away in pain-free dignity. But it is often not so — and people should know it.

My mother died three weeks ago, less than a year after a diagnosis of terminal cancer. From the start she faced its inexorable course with rational calm, unafraid of dying but determined to avoid lingering beyond what she thought bearable. She went to her solicitor and signed a living will. But all the same, linger she did, many weeks beyond what she found either dignified or bearable: it was no way to end a good life.

The NHS couldn’t have given her better or kinder care. District nurses came twice a day to check the pump that was pouring morphine into her bloodstream. Carers were on offer, with every kind of equipment delivered. An excellent palliative care team was on call 24 hours a day, with her own designated nurse, sensitive and thoughtful, who visited regularly. She had long home visits from the hospital’s palliative care consultant. All of them did all they could to keep her comfortable, pain-free, undepressed. But it was not enough. She wanted the one thing they could not and would not give her, however often she asked them — an easy death.

But because palliative care can now be so good, the myth has grown up that death is vanquished: just take the well-prescribed morphine and you can drift away on cloud nine to a contented oblivion.

Palliative care as a specialism has transformed the treatment of terminal patients, dedicated as it is to pain relief. Before, doctors, interested only in cure and success, often ignored the pain of terminal cases past help. But because palliative care can now be so good, the myth has grown up that death is vanquished: just take the well-prescribed morphine and you can drift away on cloud nine to a contented oblivion. The truth about dying has been sanitised by comforting notions that no one now need exit life through the torture chamber. But for many patients that just is not so, however good their treatment.

Yet the medical profession keeps pumping out the myth that it can guarantee a good death. They were at it again yesterday, the mighty heads of the British Medical Association and the Royal College of Nursing in their letter to the Guardian. They were opposing the assisted dying for the terminally ill bill proposed by human rights lawyer Lord Joffe, now being debated in a Lords committee.

They wrote: “We know that some of the most distressing situations arise from individuals’ anxiety about maintaining their dignity at the end of life, combined with concern about the availability of effective palliative care. The RCN and the BMA believe that with proper pain control, good communication and psychological support, far fewer people would consider asking for clinical help to die.” They seem to suggest that good management can produce the good death: alas, even the best care can’t promise that.

The truth is that old-fashioned morphine in its various forms is not a good drug, but that’s all there is. It more or less conquers severe pain at very high doses, but not all the time. Forget dreamy psychedelia — it fogs the mind in unpleasant ways sometimes with unsettling hallucinations and, the doctors admitted, contrary to myth, it is a depressant. My mother did not want to live through her last weeks, despite plentiful visitors and a large family close at hand. Long, sleepless, painful nights seemed to her interminable, and dependency for all personal care insufferable.

“If I was a cat, you’d take me to the vet and put me down,” she would say. Or: “Where’s Harold Shipman when you want him?” Once she lost her independence, she never wavered in her wish to be gone. She had always said firmly that it should never happen to her — and she looked balefully at us for allowing it. Doctors and nurses were sympathetic but after Shipman the rules have tightened considerably: many whose GPs used to grant requests for a kindly injection to help see them off quietly are now kept alive unwillingly.

My mother had enough morphine pills in the house to kill her. But by then she had trouble swallowing the few she needed for pain control, let alone the 50 it might have taken. She said she wanted that instant annihilation that anaesthetists give before an operation: the injection that knocks you out before you can count to five. But no doctor could. The law denies the dying that escape.

She asked us to put her on a stretcher and take her to the Netherlands or Switzerland. But we blenched at the idea of a terrible journey of death. She begged for enough pills, but I found I couldn’t contemplate grinding up scores of them and helping her force them down. It is one thing to support her wish but quite another to live with the memory of killing your own mother. I was cowardly; she was disappointed in me.

It doesn’t altogether surprise me that a Home Office study found that 30% of mercy killers end up killing themselves in later life, haunted by it. It is more than families should be expected to do — though an NOP poll found 47% said they would help a relative in terminal pain to die. (I wonder if they really would, when it came to it.) The same poll showed 80% in favour of allowing people to choose assisted dying by a doctor: that is an overwhelming vote for the right to escape insupportable terminal pain and loss of dignity.

The medical profession is deeply divided on this, and the BMA conference only narrowly voted against changing its stance. The Royal College of Physicians has dropped its opposition, in favour of “studied neutrality.” The Lords committee is this week in Oregon, studying its “death with dignity” laws, and next week it will be taking evidence from a host of organisations, with the Voluntary Euthanasia Society mounting a vigorous campaign.

On the other side, the Daily Mail is fighting furiously against, with the Archbishop of Canterbury and the Roman Catholic cardinal together claiming “the respect for human life in all its stages is the foundation of a civilised society”. That is a religious view humans must endure, whatever their creator ordains. But 80% of the population don’t think the dying should suffer beyond what they can bear. The government? The betting is that they’ll go with the Christians and the Daily Mail, not with the great majority.

reprinted with permission from the Guardian Unlimited, December 10, 2004