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Irene Higginson, Professor of Palliative Care at King’s College London, believes that elderly people miss out because they often have several diseases rather than just one, they may not be mobile, they often live in nursing homes where palliative care is not available, and they are undemanding.
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“They fall through all the nets and miss out on a lot of healthcare. The most frequent place of death for a woman in old age is a care home, for men it’s hospitals. Once you’re over 80 the chances of dying in a hospice are very low.”
A key reason for these failures is that care of the elderly — and death from chronic disease and in old age — is a relatively new phenomenon. A hundred years ago the highest proportion of those who died were aged 0-4, by 2004 65 per cent were 75 or older. Yet today, unless an old person who is terminally ill has cancer, the only support available to him or her in their homes is likely to come from district nurses, and then only if their needs are seen to be acute.
This relates to a reluctance to discuss death and to plan for it, which the survey confirms. Yet paradoxically it also suggests that there is widespread support for assisted dying to become legal. Doctors are uncomfortable discussing this and tend to sidestep the issue; it’s not something their patients ask about, though they do ask for pain relief. “I wouldn’t be comfortable having the power to actively take someone’s life,” says Dr Knapton. “What we need is better quality primary and community care to allow people to die with dignity in their homes if that is what they wish.”
John Ellershaw, Professor of Palliative Medicine at the University of Liverpool and director of the city’s Marie Curie Palliative Care Institute, suggests that the responses of well people answering a survey do not necessarily represent those who are facing death. “If we put more energy into using the medical and nursing expertise that we have we could provide very good quality care for the majority of patients, which for me would negate much of the discussion we have about assisted dying and euthanasia.”
This raises the question of what should be done, and how? There is widespread recognition that palliative care should be based in the community and available 24 hours a day. The Government’s White Paper highlights the need for more co-ordination between health and social services and voluntary agents. “You need urgent care as well as planned care,” Professor Ellershaw points out.
But much of palliative care is funded not by the NHS but by charities. Hospices are two-thirds funded by charities, and research on palliative care is scarce — only 0.18 per cent of cancer research is spent on it.
Professor Ellershaw talks about the need for palliative care skills to be transferred from existing specialists to other disciplines, and says that this is starting to happen with the training of nurses in cardiac failure. University of Liverpool medical students spend a month in hospices, which is valuable because it introduces them to death, he adds.
“Some of the difficulties around the end of life go back to the roots of how doctors are trained,” says Professor Higginson. “Sometimes staff waste time feeling embarrassed that they have to say things to patients rather than listening to what the person has to say to them. They need to have the opportunity and time to sit down with people at the end of their life and say, ‘Do you have things you want to talk about?’
“If we are to develop palliative care we need to find out what works. We could have teams that help people stay at home, but we know patients want continuity of care and the GP’s contracts means that they can hand over care to somebody else at night.”
In Canada the Government supports a compassionate leave benefit system which operates like maternity leave to enable carers to look after relatives who are ill. Britain, regarded as a world leader in palliative care, has not considered this, says Professor Higginson.
“There’s a lot of evidence that if you support the family you can help the quality of care for somebody who’s ill, and there’s a chance the person will be at home where they want to be. I would spend on having home-care services, supporting families, educating the public, and some on training healthcare professionals.
“The best definition of a good death is what a person says it is for them. For a lot of people it would be being free of symptoms, having dignity, being in the place where you want to be; for people who are religious it means being at peace with God; for people who live in chaos it means dying in chaos. It’s very individual.”
How To Have A Good Death, BBC Two, 9pm, Thursday, March 30
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What the survey on death found
Help and advice
The Iain Rennie Hospice at Home: www.irhh.org 01442 890222
Information about cancer: www.cancerhelp.org.uk
British Heart Foundation Information Line: 08450 708070, www.bhf.org.uk
Kings College London, Dept of Palliative Care: www.kcl.ac.uk/palliative
www.cicelysaundersfoundation.org
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