No way to die in pain. No way to die in vain. In rain while straining the gasp of fear, the death, oncoming absolute certainty, stokes imagination, of the ultimate terror, of pain and fear of absolute non-existence, or perhaps anger filled "god's" reddened face like scripted conflagration in supposed hell, nastier than the hellish world, where devilish "angels" whip their devilish lashes......shooop, shooop, shooop......punishment for being born.........punishment for not obeying thousands and millennial old scriptures, clear and contradictory, as if, being born is a curse, as if, "nirvana" or "heavens" cannot be achieved without adopting secluded monastery or ancient rituals.
No way to Die
We all hope to pass away peacefully, but despite the best efforts of 21st-century medicine, too many of us end our lives in agonising pain and distress. Why are we seemingly incapable of managing death effectively? Sarah Boseley reports, while Alan Rusbridger describes his father's final days 'clouded by his growing pain and sense of betrayal' - and asks, must it be this way?
Death can be a shocking experience. Not because we didn't expect mum or granny to die, but because we had no idea that her last hours or days would be so distressing. There is, I am sure, such a thing as "a good death" - a peaceful, emotional but pain-free interlude in which to say farewell - but start to talk about the way we die and you find that when it comes to their own loved ones, a lot of people have experienced something very different.
In my case, I remember my ferociously independent, professional spinster cousin, 50 years older than me. I went to see her in a nursing home, having been told she might not have long to live, but still expecting a political lecture or some sharp comments on my lifestyle. She was raving, didn't appear to recognise me and called constantly for help from a nurse who didn't come. She appeared to be in pain, and we begged medical staff for drugs. She died a few days later. When I related the story to a colleague, he immediately said the same thing happened with his mother. Everybody I have mentioned it to has a similar story.
Part of the problem is our problem - we the living don't know anything about death. It's hidden from us; we don't know what to expect, what to do and how to behave. But that's not all. In spite of the scanners, the drugs and the humming technological advances of 21st-century medicine, some people still suffer a death that is medieval in its pain and distress. And ironically, as the importance of palliative medicine - the alleviating of pain rather than attempting to cure a condition - becomes better recognised, there is growing evidence that many doctors are now reluctant to give large doses of painkilling drugs, even to people who are manifestly in extreme distress.
Frustrated by this situation, more and more of us are asking why it is illegal to hasten death or ask somebody to do it for us. In April, a House of Lords select committee recommended further examination of the assisted dying for the terminally ill bill, which would have allowed a person who is suffering unbearably to ask for and receive assistance to die, within strict safeguards (the bill fell, but will almost certainly be presented again). Yesterday, the British Medical Association, which has for so long said the duty of a doctor is to preserve life as long as possible, dropped its opposition to physician-assisted suicide and to euthanasia. It is now a matter for society and for the law, it said. The BMA will only seek to safeguard the right of those doctors and patients who do not want to be involved.
In spite of the best intentions, 60% of us end up dying in hospital. Yet hospitals are usually not the place we find most comforting, and oddly, when death is inevitable, it does not necessary follow that the best care should come from doctors and nurses whose job is to make us better, not to help us die. Treating the living and treating the dying are two quite different types of medical care and, says Ged Corcoran, Macmillan consultant in palliative medicine at University Hospital, Aintree, Liverpool. It is not easy to take the crucial decision that a patient is not going to recover, so that their care can switch from an attempt to cure to the relief of symptoms and pain. (There is, however, such a thing as an identifiable "dying phase", he says, lasting two to three days, where the person has clearly changed. In many cases there is "an element of clouding of the consciousness" before death shortly follows.)
Alleviating pain requires an understanding of what it actually is. Pain is an alarm system - a warning that the body is in danger. It is caused by the stimulation of certain sensory nerve endings by chemicals that have been released by the damaged cells. But pain is not only a physical discomfort, relievable by a drug. Dame Cicely Saunders, credited as founder of the hospice movement in the UK, talked of "total pain" - physical pain mingled with and even partly caused by emotional and spiritual pain.
At the North London hospice in Finchley, a place of peace and beauty with rooms full of natural light opening on to gardens and a central courtyard full of plants, medical director and palliative care consultant Christopher Baxter says that everybody has an identifiable pain threshold - a point at which a sensation becomes pain - and that this can be altered with appropriate care. "When somebody comes into the hospice, unless they are in agony, I will change nothing for 24 or 48 hours. With quite a lot of people, the pain will disappear. They are in a warm environment, they are comfortable and they are safe."
Because of the large local Jewish community, the hospice has taken quite a number of Holocaust survivors. "Some of them will have buried it in their psyche, but when they are faced with their own death, they are reliving it. Some of their pain may be reliving the camps."
But if pain is more complex than we sometimes understand it to be, drugs remain the principal mechanism by which to manage it. Morphine, still the most useful pain management medication, is a safe drug when used properly with gradual increases in the dose; the biggest problem is the drowsiness it causes. Benzodiazepines and barbiturates may be needed for the symptoms of dying, which can include suspicion, paranoia and hostility (caused by toxins in the body). "Some patients are in such distress that you can virtually only treat them by sedating them," says Baxter.
However, doctors admit that even where they have the required drugs to alleviate a patient's suffering, they are frequently holding back from doing so. This they attribute to the Shipman effect - the fact that the worst ever serial killer in Britain was a doctor who ended the lives of patients with lethal injections of diamorphine, a controlled drug used legitimately to dull pain at the end of life.
"The Shipman case is having and will continue to have enormous impact on everything we do," says Laurence Gerlis, a central London GP. "It has certainly affected me. I'm very uncomfortable about prescribing controlled drugs at all ... If a well-meaning doctor just gives slightly too much and the morphine appears to have ended life, you could be held as the next Shipman. I certainly worry terribly about that."
Post-Shipman reforms include proposals to train coroners to "think dirty" and not assume that what a doctor tells them of the cause of death is always accurate and truthful. A survey of 1,000 doctors by Medix UK found that 74% thought this would make them more nervous of prescribing pain relief to the dying. "I tend to commence lower, and often return to see the patient - still in pain - and hate myself and curse Dr Shipman for my not having the guts to prescribe a decent dose of analgesia," says one. "There is no doubt that many years of the hospice and palliative care world building up confidence to use opiates well has been set back by Shipman," says John Wiles, consultant in palliative medicine in Bromley and medical director of a hospice.
Good quality palliative care is, of course, about more than drugs. The intention is that those who enter hospices feel loved, supported and listened to. "It was like coming into paradise," says Myra Hersh, a 69-year-old former ITV production manager, whose cancer has spread from breast to lungs to bone. She had never realised, she says, that there could be two different forms of nursing - treatment and care. "An extraordinary calmness has descended on me. When I first got here, I was so nervous, thinking to myself, I'm never going to get out of here. I wasn't walking, I had no appetite and no energy. I was in pain. Now the pain is completely under control."
But with only 220 hospices in the country - the vast majority independent charities dependent on donations and volunteers - only a small minority of the dying can expect to receive this kind of treatment. Most hospitals are trying to get closer to the hospice model of care, but it is hard. There are significant shortages of palliative care consultants and specialist nurses in the UK, points out Helen Clayson, medical director of St Mary's Hospice, Ulverston, in Cumbria. "You have junior doctors being the first line of contact and they don't have the experience or the knowledge of the complexities involved in end-of-life issues."
Guidelines for palliative care developed by the Royal Liverpool University Hospitals and the Marie Curie Centre are being rolled out across the UK. They are intended to help all doctors and nurses who come into contact with the dying to change tack and ask the right questions. Do the family know the person is seriously ill? Have any unnecessary drugs, given to try to improve their condition, been stopped? Have all the right drug treatments been started?
But Irene Higginson, professor of palliative care and policy at Guy's, King's and St Thomas' in London, says doctors and nursing staff do not volunteer for the training. "The big problem for palliative care teams is having enough clout in hospitals," she says. There are also too few of them. The House of Commons health select committee last July applauded the "ambitious goal" of the government to double the number of consultants by 2015 and put an extra £50m into palliative care. There is little doubt, meanwhile, that the pressure on doctors and nurses in a big hospital, the focus on getting patients into beds and out of them again to meet targets, the sheer urgency of the place, are unconducive to a pain-free death, even if copious morphine is available.
"I don't think it is about blaming or condemning those who aren't doing well," says David Clark, director of the international observatory on end of life care at Lancaster University. "It is about looking at how we change the culture of dying in a hospital. Are people being routinely screened for their pain? Is it being monitored carefully?"
Families tend to be happier with hospice care, but this is not the answer, because the best care ought to be where most people die - in hospital. And it can be very good. "I say to people, I promise you, when you feel desperate, we will make it so that you are not frightened," says Corcoran, who deals directly with 110 deaths a year in his unit and advises on 350 more. "When the person dies, it is a very gentle thing."
But the suffering that some experience, and the fear of others approaching death that they will experience pain, is distressing for them and swells the ranks of the euthanasia movement. Corcoran is disturbed by the assisted dying bill, which he feels is "almost a counsel of despair". There are a few, he agrees, who cannot be relieved of their pain, "but the vast majority reach a point where they can be cared for satisfactorily".That, clearly, is how it should be, but not yet how it is for too many people nearing the end of their lives. There is much to do until we can all walk away from the hospital for the last time feeling, through the sadness, that at least mum or granny had a good death.