Why hospices need care
7 Mar 2003
Looking after people with terminal illnesses is not only vital, it’s also a clear measure of society’s compassion. Yet hospices in the UK remain desperately underfunded. What’s to be done?
Hospice, or palliative care, aims to give people with incurable diseases the best possible quality of life in their last days, months and years, and also help patients, friends and family come to terms with their impending loss.
The organisation Hospice Information says the driving force behind hospice care is “the desire to transform the experience of dying”. This starts with affirming death as a natural part of life.
Each year, hospices strive to offer tens of thousands of people pain relief, dignity, peace and calm at the end of life. They aim to meet all needs – physical, emotional, social and spiritual – and help people live as actively as possible until death.
They do this by providing a range of services including pain control, symptom relief, skilled nursing care, counselling and complementary therapies. The facilities also offer spiritual care, art, music, physiotherapy, beauty treatments and bereavement support.
So how does hospice care work and how do we ensure it is supported?
Most of the time, people use these services periodically at difficult times in their illness. The director of policy and communication for charity Help the Hospices, Chris Shaw, explains, “Hospices are just one part of the care [patients] receive. You find they often come in for a short-ish while – the support can help control symptoms, and when they reach a better level, they go home.”
Dying people’s most common wish, says Chris, is to die at home. The flexible level of care enables more people each year to do so. Hospices can also create a vital breathing space for carers of patients, often family, for whom constant caring can be exhausting.
Development adviser for the National Council for Hospice and Specialist Palliative Care Services, Peter Tebbit, says caring for a dying patient is far from simple.
“There are often very complex problems of pain management and for that you need specialist doctors and nurses in palliative medicine. On top of that, there may be all sorts of social consequences. The patient may be young or may have young children for example,” he says.
It is this complex and specialised role that has seen palliative care become so vital to modern healthcare. Hospices have been around since medieval times, but St Christopher’s Hospice in London, founded in 1967, saw the birth of the modern hospice, combining research with care.
Since then, the modern hospice movement has grown to encompass 233 dedicated UK in-patient units (25 of them for children), with more offering day care and home care services.
What started off as a voluntary charity network has been recognised as having such a positive effect that, over the years, the government has been pressured into making it available on the NHS. To this end, just over a quarter of such care units are now run under the NHS.
The government is slowly increasing available funds. It also announced £50 million in ring-fenced extra funding at the end of last year and set aside £70 million of lottery money for palliative services. However, there are still many critics of the system.
Ms Shaw says the NHS has realised it should be paying for a greater proportion of palliative care in the UK but the present system of extra funding isn’t helping. “We need a more secure basis of funding in order to give hospices the opportunity to plan into the future,” she said.
Health spokesman for the Liberal Democrats, Dr Evan Harris MP, agrees. “All palliative care should be funded by the NHS to give a basic minimum level. It shouldn’t need to rely on charity.” He says the wide variation in quality and number of services across the country proves that some people are unfairly missing out on this vital service.
Peter Tebbit also points to the variation of care and argues that the only logical outcome is for more government funding to be made available. “Fifty million pounds is good, excellent, but it is not sufficient.” In the UK each year, £300 million is spent on adult palliative care alone.
Things are changing, however, and the government’s own Cancer Plan of 2000 highlighted palliative care as a vital resource. The extra funding is also helping the government meet the framework laid out by the National Institute for Clinical Excellence, due to be completed in February 2004.
The way forward
But while the situation improves, the majority of hospices still rely on public contributions. Each year, the facilities help 59,000 patients on site and 135,000 within their homes. The majority, and in particular those dedicated to helping children, remain mostly funded by voluntary contributions.
Mr Tebbit points out that there is still a large funding gap to be covered. And Ms Shaw reveals that the enormous value of palliative care means people are being offered it at a far earlier point – often soon after diagnosis – and so the cost of it is set to increase each year.
There is also the dilemma that the piecemeal introduction of money from the government will see independent voluntary bodies replicating statutory services and so find themselves breaking the rules of the Charity Commission.
But while officials debate the status of hospices, the problem remains that limited funds mean many people with terminal illnesses such as multiple sclerosis and motor neurone disease miss out on palliative care. Some hospices have even warned that they may have to remove beds and cut down on staff to keep their already over-prescribed services going.
The various organisations supporting and representing hospices are planning several campaigns for funds this year. Ms Shaw suggests if anyone wants to help, they contact their local hospice – a list of which can be found on the Hospice Information website.
“It’s not just money, either,” she adds. “If anyone has time, we are always looking for volunteers.
Help the Hospices
National Council for Hospice and Specialist Palliative Care Services