MANY OLDER people have no control over how they die. They are never given an opportunity to express their wishes about their own death and when the final curtain comes down they are often on stage alone, in unfamiliar surroundings, without comfort or dignity.
Some also suffer a “social death” for years before their physical death when their needs are ignored and they experience isolation and loss of control. Such a scenario is particularly true of people who die in care homes and hospitals.
This bleak picture of the passing of the light is revealed in a report, End of Life Care, compiled by Jane Seymour, a senior lecturer in palliative care at Sheffield University, for Help the Aged. The research, published tomorrow, which the charity describes as “groundbreaking”, makes 23 recommendations.
Among them are proposals that end-of-life care for older adults should be seen as an urgent public health issue, that older people must be partners in their own care at the end of their lives, and that inequalities in access to palliative care must be eliminated.
“The care system routinely and unwittingly discriminates against older people, a situation made worse by our taboos around talking openly about death and dying,” says Tom Owen, policy research manager at Help the Aged. “A number of older people questioned why we wanted them to dwell on dying when there is so much to live for. Talking about dying is considered somehow incompatible with their main priority of living well right until the end of life. But we need a debate about the experience of dying among older people to shape services and support for them.”
The report highlights age discrimination in the NHS resulting in huge inequalities in the way that care and support are made available to older people. For instance, only 8.5 per cent of those dying of cancer aged over 85 die in a hospice, compared with 20 per cent of all cancer deaths. In the UK 1.3 million older people need care and support in their daily lives; half of all over-75s report that their lifestyle is limited as a result of illness.
The “disadvantaged dying” spend the last months or years of life “living on thin ice”, according to the report. Because they often suffer from multiple coexisting chronic conditions, old people are sent from one hospital to another and become part of the “revolving door” syndrome, parcels rather than human beings as “cost shunting” goes on between health departments and social services. They are uncharitably labelled “bed blockers”, as if being ill and not getting proper treatment were their own fault.
Dame Cicely Saunders, the 87-year-old founder of the St Christopher’s Hospice movement, which runs hospices where the dying are treated with dignity and patients’ families are encouraged to share in a peaceful death experience, thinks that the forlorn picture of old people dying alone and uncared for is an indictment of GPs. “No one goes to hospital unless they are referred by a doctor,” she says. “Unfortunately, when the health service came in, dying was not part of the vision and doctors don’t seem to discuss death with their patients.
“When John Bowlby was writing his attachment theory (in the 1940s), he noticed that during an air raid a child in his mother’s arms feels secure compared with a child not in his mother’s arms. If you feel safe you can face death. The young old should look out for the old old so they are not left to die a lonely death in awful surroundings, frightened, and shunned by nurses who are too busy. All you have to do is be a good neighbour.”
One man quoted in the report illustrates the callousness with which some doctors treat older people. He recalls being admitted to his local coronary care unit: “I was a very ill man and was immediately asked if, on falling unconscious, I would like to be resuscitated or not. This was a question that had never been put to me in the past. Why was a doctor asking me if I wanted to be brought back to life again if I died, as if he was asking if I wanted milk in my tea? Why was it never mentioned that this was something I might have to consider in the future?”
People write their wills or plan their funerals but few give much thought to the care they might want to have at the end of their lives. Composing a living will to record their views about medical treatment covering “what if” scenarios is one suggestion made by Help the Aged, but this is not common practice and such wills are controversial.
Although Leslie Burke, the former postman suffering from cerebellar ataxia, a degenerative disease, won his case not to have ANH (withdrawal of artificial nutrition and hydration), the General Medical Council is appealing against that decision. Dame Cicely, on the other hand, who has a disease which she says is spreading slowly, has made it known that she does not want a Peg (a percutaneous endoscopic gastrostomy tube to help with eating).
Counselling the dying is part of the job for Father Eddie Higgins, a Roman Catholic priest at St Thomas the Apostle Church in Nunhead, southeast London. He says: “I see a lot of patients in hospital who are not Catholic, are not even religious, but when they see me they ask if we can talk. At King’s College Hospital, for instance, there are only three chaplains and it is a 1,500-bed hospital.
“Older people tend to say ‘I don’t want to make a fuss, I don’t want to be a burden’. They belong to the war generation who were taught to ‘pull yourself together and get on with it’. An awful lot of the time the person dying daren’t talk for fear of upsetting their family, and the family don’t want to talk about it for the same reason, so you get a stand-off. They are relieved to have someone like me, who is neutral. I don ’t find discussing their death depressing; it is very humbling because although there is a fear of the unknown, there is also great thankfulness for their life.”
David Gaynor, 71, one of Father Higgins’s parishioners, lost his wife suddenly a year ago while they were on holiday in Torquay. They were married for 45 years and have four children and nine grandchildren. “She had diabetes, problems with her heart and pneumonia and she died in hospital,” he says. “We never had time to talk about death or dying.” Now he has had cancer diagnosed, and other things including diabetes. But his doctors at King’s have arranged for home care from Macmillan nurses as well as day care in a hospice.
“I have been told I have only months to live, but the Knights of St Columba are insisting on taking me to Lourdes with my carer,” Gaynor says. “I am lucky that I have time to plan things. I’ve had a body massage for the first time in my life; it doesn’t ease the pain but it is very relaxing.
“I am not frightened of dying. I get so much support from my faith, my family and my friends, I am OK. My daughter comes in every day and I go to the cemetery, then to Mass.
“My wife’s sister arrived from Dublin to support me and she said ‘I’m here till you die’, which sounds terrible but she means well. I told her I don’t intend dying yet.”
