The hospice movement has made major advances in end-of-life care but more change is needed. With a government advisory group due to report, Mark Gould looks at the issues
Prime minister Gordon Brown believes Dame Cicely Saunders stands with Martin Luther King and Nelson Mandela as a genuine modern-day hero. In his book Courage: eight portraits Mr Brown pays tribute to Dame Cicely for creating the hospice movement as we know it, where innovative palliative care and pioneering use of morphine has given many millions of people a death free of pain and discomfort.
The movement's philosophy 'to help the dying to live until they die and their families to live on' has allowed many to pack a lot of life into their last weeks or months, while also comforting and supporting grieving loved ones.
It probably sums up the repressed British view of death that Dame Cicely, who died in 2005, is almost unknown to most people in the UK. She founded St Christopher's Hospice in Sydenham, south London, in 1967.
It is now a world leader in the care of the dying, focusing on integrated care, teaching and research that has led to profound changes in medical and nursing attitudes to death and the dying.
In the movement's 40th year, its approach could become the cornerstone of a new national end-of-life strategy that could ensure a better way of death for us all.
Last year the Department of Health assembled an advisory group under national cancer director Professor Mike Richards to formulate the first national end-of-life care strategy.
Their report to ministers is due this month. And not before time, as Western countries approach a crunch moment in terms of how we care for the elderly that some rate as significant as climate change or obesity. In 30 years, almost one in four people will be over 65, compared with one in 10 in 1950.
At the same time, demands on health and social services are rising. The Alzheimer's Society says of the 700,000 people in the UK affected by dementia, over half actually have the disease. In less than 20 years nearly a million people will be living with dementia. By 2051, this will soar to 1.7 million.
And while we become more dependent with age, fewer of us will have family to turn to. Some 500,000 adults die in England every year and surveys show 80 per cent want to die at home among family and friends - but just 20 per cent get their wish and only 4 per cent of adults pass away in hospices; the rest die in hospitals or care homes.
Recognising the voluntary sector
St Christopher's chief executive Barbara Monroe wants the UK's 190-odd hospices to become local centres of excellence; sharing knowledge with the NHS and others on providing services such as palliative care and pain control at home. 'Hospices are sometimes criticised for delivering "deluxe dying for the privileged few", but we serve a complex mixed community in south London. We can't all die in hospices so it's about providing this sort of care in other places,' she says.
Hospices are charitable organisations relying on varied sources of revenue. For more of us to benefit from their services as inpatients or at home, Ms Monroe says the end-of-life strategy should guarantee consistent and fair funding.
'I would like to see recognition of the role and expertise of the voluntary sector in end-of-life care and commitment to three-year contracts and full payment for agreed elements of care delivered on behalf of the NHS.'
Ms Monroe also wants guarantees that in an emergency, any patient can be visited at home by an appropriate professional 24 hours a day. To ensure services meet needs, she says each primary care trust and local authority should have a named lead for commissioning with responsibility for service integration.
Ms Monroe's thoughts are echoed by charity Help the Hospices, which in August issued a report that revealed patients and families have little or no choice in where they die, because of major flaws in planning and commissioning.
Help the Hospices director of policy Jonathan Ellis wants the end-of-life care strategy to offer everyone a named contact to support them and help co-ordinate care. 'This will ensure that individual needs and preferences are central to the care that they receive, just as we have come to expect in other parts of healthcare such as maternity services,' he says.
There is a long way to go to ensure we get the death we want. In the West Midlands 75 per cent of renal patients die in hospital, 60 per cent of dementia patients die in care homes and 55 per cent of cancer and chronic bronchitis patients die in hospital.
NHS West Midlands chief executive and member of the Department of Health's end-of-life care strategy team Cynthia Bower says one of the big changes necessary is professionals becoming more honest with patients. 'If you are 80 and have a chronic illness, professionals have to be a bit more up front with you about where you want to end your life,' she says.
But she feels that patients must also get a grip on the issues. 'I always tell my son where I want to die. We need to have services in place that support the dying and their carers, especially those with dementia, which is a huge issue.'
While institutional death is now the norm, standards vary from good to horrific. In August MPs and peers on the joint committee on human rights highlighted the fact that 21 per cent of care homes and hospitals for the elderly failed to meet even minimum standards on dignity and privacy.
It uncovered evidence of neglect, abuse, discrimination and unfair treatment of frail older people. It concluded that an 'entire culture change' is needed that must extend to the attitudes of care homes and GPs who, critics say, are only too eager to push elderly people into hospital when, with a little thought and planning, admissions could be avoided.
In the West Midlands alone in 2005-06 over£84m was spent on admissions into hospitals that ended in death from a range of long-term conditions. Areas with the highest levels of deprivation have the highest levels of hospital deaths.
The forthcoming strategy is expected to guarantee rights such as being able to choose where to die, consistent high-quality care, equity of access and better support and respite for carers. This will mean new responsibilities for health, social care, voluntary bodies and private care homes.
Director of policy at Help the Aged and advisory board member Paul Cann feels we need an explicit end-of-life bill of rights.
'The strategy shouldn't just be some best practice guidance. It needs to set out explicitly that we have a right to be pain-free; to have a choice in where we are, to have support, to have a life and to be able to go on living while we are dying - that is where social care has to do its job properly,' he says.
He feels we have a great opportunity to redress a lot of the discrimination older people face in dying. 'Older people are left out of decision-making, even over the most minuscule things like what time they get up; whether they can have the window open to hear birdsong in their last days; letting their cat sit on the bed - so many tiny things that are important.'
But the NHS is listening and changing. Kim Wrigley is a training mental health nurse who specialises in care of elderly patients with dementia. She is end-of-life care lead for NHS North West and is overseeing a scheme to implement cutting-edge care policies - the Liverpool care pathway and the Gold Standard framework for end-of-life care - in five care homes looking after people with dementia.
While communication is key to ensuring patients can exercise choice, there are problems. She says care homes have to look after people with complex mental and physical conditions and complex treatment regimes.
'In general, care home staff don't have the levels of skill to ensure residents have a good end of life.'
She feels care homes also suffer from isolation from NHS and social services; exacerbated by high staff turnover and, among overseas trained staff, possible gaps in the grasp of nuances and subtleties important to elderly English patients.
'We are looking at a communications skills training strategy for everyone involved, not just the breaking bad news stuff but knowing about a person's beliefs, spirituality; what is important to them and makes them a person.
'We also need to develop skills around knowing when a dementia patient is in pain,' she says. To overcome this sense of isolation, the care homes pilots work with voluntary and social services, plus their local community mental health team, district nurses and Macmillan cancer nurses.
Ms Wrigley says consistent continued funding is vital. 'We have rolled out the Liverpool Care Pathway in all these homes but many people involved have been seconded to the pilots or are on short-term contracts. That must not happen under national strategy; you need full-time champions to lead on end-of-life care.'
While increasing numbers of people are living in care homes for many years and can regard them as home, some of the shortcomings Ms Wrigley describes manifest all too painfully when residents become very ill and are simply shipped off to hospital.
'Traditionally management has been reluctant to encourage death on the premises as it is wrongly perceived to give the place a bad name,' she says. This is compounded by GPs and primary care out-of-hours services that are sometimes too keen to blue-light very poorly residents to hospital.
Marie Curie Cancer Care runs 10 hospices and employs 2,700 doctors and nurses caring for around 25,000 people and their families every year. It is running a number of pilot schemes to keep people out of hospital.
Head of policy Emily Sampson says: 'It doesn't cost a lot of money to ensure people can die at home. There is an initial cost but you are freeing up very expensive hospital beds.'
Marie Curie is working with the NHS, local authorities and the voluntary sector in Lincolnshire, Tayside, Leeds and Barnet on projects to allow patients to die at home as part of the Delivering Choice agenda. It says its solutions are simple and could be tailored to any situation.
Running for almost three years, the Lincolnshire project team found that where people are in hospital with a cancer but also other terminal lung and heart conditions, the main barriers to being discharged are a lack of 24-hour support and the need for a complex package of health and social care. But there is also a simple lack of awareness that patients and carers can say 'I want to go home'.
Marie Curie's palliative care co-ordination centre sets up the home care package in liaison with nurses, doctors, patients and family.
It also employs two nurse palliative care specialists working at the Pilgrim Hospital in Boston and Lincoln County Hospital, who trawl the hospitals looking for people who could be looked after at home. For added support there is a rapid-response team in rural areas where there is no 24-hour district nurse cover.
'They provide a service that offers psychological support but also perhaps providing additional drugs as needed and going out in emergencies. When carers call describing new symptoms over the phone they can get reassurance that this is normal or advice on what to do,' says Ms Sampson.
Ms Sampson echoes many other patient groups in feeling that the 'medicalisation of death' is a factor in keeping dying people in hospital.
'To an extent doctors don't seem to want to give up on dying people. It is part of the training not to give up and see it as a failure when in fact death and a good death is part of life.'
Founder vision: Dame Cicely's legacy
Born in 1918, Dame Cicely Saunders trained as a nurse and worked as a lady almoner (medical social worker) at St Thomas' Hospital in London, where she met David Tasma, a Polish refugee dying of cancer.
They formed a strong relationship, talking of making his peace with God and realising there must be a better place to do this than a hospital ward. When he died Mr Tasma left Dame Cicely£500, which became her inspiration for retraining as a doctor.
Hospices run by nuns had existed for many years to provide comfort for the dying. But Dame Cicely, who died in 2005 at St Christopher's hospice (see overleaf), pioneered the use of pain relief and symptom control inside hospices.
'Living until you die': St Christopher's hospice
There is a rather well-stocked drinks trolley in the day room of St Christopher's Hospice. Beer, wine, gin, in fact anything you fancy is available as an aperitif or even after lunch. Chief executive Barbara Monroe says the focus at the hospice is on 'living until you die'.
Inclusion is key. Local schools are regular guests in art classes and some of their work, a series of colourful masks, decorate the corridors. They also write poems about death, based on their conversations with residents. The London College of Fashion has been involved in a project with residents to design their own clothes; results would not have looked out of place in the pages of Vogue.
Last year the hospice looked after 955 inpatients and 1,880 people dying in their own homes, including 10,000 home visits. A year's running costs are£2.28m. It also runs a bereavement service that has seen 250 children and their families referred last year. Some of their relatives have died of illness; others as the result of gun crime.
St Christopher's has also given the government support and advice for services offered to victims of the 2004 tsunami.
In 2001 St Christopher's received the world's largest humanitarian award, the $1m Conrad N Hilton Humanitarian Prize, in recognition of founder Dame Cicely's work.
St Christopher's Hospice chief executive Barbara Monroe says prime minister Gordon Brown has been invited to see the legacy of Dame Cicely after writing about her in his book Courage: eight portraits.
'I think Mr Brown recognised her tenacity. She saw serious problems and kept on trying to do something about them. She did it in a way that broke the mould and that could be what he saw as courageous.'
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