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Feature: Dying wish

More than half of deaths still take place in hospital, despite most people wishing for a peaceful death at home. Why aren't more people dying the way they would choose?

The figures are telling. According to the latest mortality numbers from the Office for National Statistics (ONS), more than half of all deaths still take place in hospital. This is despite the fact that when asked nearly two thirds of the general population say they would like to die at home and nearly a third would like to die in a hospice. Perhaps even more shocking is the fact that in some areas 69% of people die in hospital. 

The Government's end-of-life care strategy published in 2008 stresses that, wherever possible, people should be able to “spend their last days in the place of their choosing.”

There is also no question that someone dying in hospital is more expensive to the NHS than the same person dying in a community setting.

Hospital care for those in their last year of life costs the health service around £3.7 billion, with each patient using around 30 bed days.

The numbers say it all. A recent study by think tank The King's Fund highlights that using hospital beds more efficiently could save the NHS at least £1 billion a year and deliver benefits to patients. 

And a 2007 National Audit Office analysis of patient records in one primary care trust (PCT) found that 40% of patients who died in hospital did not have a medical need to be there. Nearly a quarter had been in hospital for over a month.

Last month, Macmillan Cancer Support highlighted figures which suggest almost three-quarters of cancer patients in England who die in hospital beds would prefer to die at home.

This is the equivalent of 36,000 cancer patients every year, the estimated data showed.

It comes as the charity launched a new report setting out recommendations for improving choice at the end of life.

It is also calling on the government to make social care free for everyone in their last weeks.

Gus Baldwin, head of public affairs at Macmillan, says that it is “absolutely appalling and cannot be right that such a large group of people who express a wish to die at home are still dying in hospital.”

The 2012 VOICES National Bereavement Survey from the ONS showed relatives and carers of cancer patients who died thought care in hospitals was often sub-par to care received at home.

Some 63% of those whose loved one died at home rated the overall quality of care received as excellent or outstanding, compared to only 37% of those whose loved one died in hospital.

So why can't the NHS manage to move more dying people out of hospital and back home or into a community setting before they die, or indeed keep them out of hospital in the first place?

As with many things in the NHS, the issues are numerous, yet the main sticking points are often the same across local systems. Firstly, frequently there are not the staff in place to facilitate a co-ordinated and swift approach to hospital discharge and to getting a patient back home, and secondly the fear is that if a patient is discharged to primary and community care services will not in any case be able to adequately meet their needs.

The ONS VOICES survey also shockingly showed that in over 80% of cases people who died at home did not have continuous access to pain relief.

Simon Chapman, director of public and parliamentary engagement at the National Council of Palliative Care, says that there is still a “huge need to co-ordinate services and a huge need for free social care at the end of life so that territorial disputes [between various NHS and social care organisations] are avoided.”

“It is really important to get people the services they need so they can die at home,” he adds.

Mr Chapman believes that doctors and nurses also need much better training and education in end-of-life care.

“There is a danger that the trepidation of healthcare staff in talking about end-of-life care is preventing conversations with people when they themselves are ready for that conversation.”

The National Council for Palliative Care is campaigning for compulsory training on end of life care to be introduced for both nurses and doctors pre and post registration.

Last month Marie Curie Cancer Care teamed up with the Royal College of General Practitioners (RCGP) to create new guidelines for primary care teams looking after patients at the end of their lives.

The partnership is aimed at improving end-of-life care, including for vulnerable patients such as those with dementia and learning disabilities, and will focus on advanced care planning, pain management, health inequalities and commissioning issues, alongside patient choice on place of death.

So is it possible to have a good death?

Marie Curie's director of nursing Dee Sissons explains that a good death will mean different things to different people.

“The principle of having the right care at the right time, having access to the services and the symptom control that are needed, and delivering choice to patients will mean that each individual can have a good death,” she says. The government recently launched a new coalition on end-of-life care after it axed the Liverpool Care Pathway (LCP) sparked by increasing criticism of the pathway and how it was being used.

The Leadership Alliance for the Care of Dying People brings together health and social care groups with the aim of improving care for people at the end of their lives.

The alliance is set to provide guidance on what needs to occur in place of the LCP and is set to work with end-of-life healthcare professionals, patients and families on what good care means.

It will also consider how to implement recommendations around the accountability and responsibility of individual clinicians, out-of-hours decisions, nutrition and hydration and communication with the patient and their relatives or carers.

Mr Baldwin questions why in an era of supposed patient choice, A&E and then admission to hospital is still, in the majority of cases, the only recourse for people at the end of their lives, when they have expressed a wish to die at home. 

He sums up what a good death means. “There are cost savings to be made in enabling more people to die at home, but principally this should be about allowing people to have a good death, eating what they want when they want, going to the toilet when they want, seeing family and friends and even their pets when they want. 

“All these things make the difference between a good and bad death.”