P

eople nearing the end of their lives are not being given the care they deserve, which includes effective pain management and being treated with dignity and respect, say MPs.

Moreover, due to a lack of National Health Service care and support, 60% of the 500,000 people in England who die each year do so in hospital, even when there is no clinical need for them to be there and the fact that most would prefer to die at home, according to members of the House of Commons Public Accounts Committee, in a new report.

The Department of Health has acknowledged that end-of-life care has not received the priority status that it should, and in July 2008 it published a new strategy committing £286 million in additional funding to the area over two years.

However, the MPs caution that this new money might not be used as intended, and they call on the Department to require Primary Care Trusts (PCTs) to account for how it is spent.

The MPs’ inquiry found a lack of training in basic end-of-life care among front-line staff and poor coordination of health and social care services for the dying, which means the wishes of people approaching death are often not known. And, even where the wish to die at home is clearly communicated, it frequently cannot be satisfied because of the lack of services for caring for people dying at home.

“It is appalling that people dying in hospital are not always being given the end-of-life care they deserve, including effective pain management and being treated with dignity and respect,” said the Committee’s chairman, Conservative MP Edward Leigh. “People approaching the end of life have as much right to quality of life as anyone else,” he added.

The report points to the increasing complexity of end-of-life care provision, with people living longer and the incidence of frailty and multiple conditions in older people rising. At this stage, people often require a mix of services provided in hospitals, care homes, hospices and their own home, delivered by many people, including families and friends, specialist palliative care staff and generalists such as doctors, nurses and social workers.

Millions on palliative care
In 2006-7, PCTs estimated they spent £245 million on specialist palliative care, delivered by around 5,500 staff with specific training in the management of pain and other symptoms. However, there are no estimates of the full financial cost of end-of-life care, largely because of difficulties in identifying the proportion of time generalist staff spend with such patients, although the cost to NHS and social care services of providing care to cancer patients alone in the 12 months prior to death (27% of deaths) is put at £1.8 billion.

The MPs say that, in improving the skills of health and social care staff, much can be learned from “the gold standard of service” provided by hospices. They also note that around 70% of independent hospices currently have only one-year contracts with the NHS and that for 97%, the funding they receive does not cover fully the costs of NHS services which they provide. The report calls on PCTs to put in place three-year rolling contracts - which should cover the costs of the NHS services provided - to enable hospices to better plan their use of resources and develop their contracts.

Moreover, more people could be supported to die in their own homes or in a care home if there was a more responsive system for providing the equipment and support services needed, says the report, which also urges PCTs to check that care home residents have the same access to GPs and other health professionals as they would if they were living in their own homes.