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Where You Die Does Matter

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How and where we want to be cared for at end of life still seems to be something of a taboo subject in our society, even between friends and family. But with calls for reform of the care system hitting the headlines and the government due to publish a white paper on social care soon, it's high time we all started being more open about death.

I believe that we should all have the right to choose where we spend our final weeks and months. We imagine most people die at home, or failing that in a hospice, but sadly the majority of people in this country still die on a hospital ward, often against their wishes.

Research by Macmillan Cancer Support shows that with the right support, 73% of people with cancer would prefer to die in their own home. Only 27% do.

This begs a question - why is it that so many people die in a hospital bed?

As ever, there is no simple answer. What is clear is that when 24/7 community nursing is not in place, people are unnecessarily and expensively admitted to hospital, often never to leave. Out of hours GPs are often inexperienced or do not know the patient or their condition. Either they or a carer are coping without support and often end up dialling 999 when, if the right support had been available, a crisis would have been dealt with and a 'bad' death avoided.

People caring for cancer patients at the end of their lives tell us that the strain of caring for them - helping them to sit up in bed, drink, deal with agonising pain, get washed or go to the toilet - can take a significant toll on them as individuals and as families. From my own experience caring for my wife as she died of cancer, it is exhausting physically, and emotionally.

This is where social care can play a vital role in care for the dying. It not only helps people to stay at home, but it can also provide that bit of much-needed help for the people looking after them.

Unlike NHS care, social care is not freely available to all. Today, patients approaching death have to be means-tested to determine whether they are eligible for help with the cost of social care support. This involves completing a series of complicated forms to declare their savings and assets. Not the easiest thing to do as you die. Patients and families often refuse care they desperately need when they learn that they will have to pay for it The system is broken.

So what is the solution? An independent review into the way that palliative care is funded in the UK was published in 2011. It recommended that the social care means-test be scrapped for those in the final months of life. This would be a significant step towards fully integrating the health and social care systems for people at the end of life, enabling more people to be discharged quickly from hospital and be cared for in their own homes. And because of this it could save money. Better for them. Cheaper for the NHS.

Macmillan's work shows that early referral to good specialist palliative care, such as the service we support in Midhurst, enables many more people to die in their preferred place of care, and many fewer to die in hospital, saving costly hospital care in the last year of life.

The government has the chance to demonstrate its commitment to giving people choice at the end of life in the upcoming Social Care White Paper. Together with Help The Hospices, Marie Curie Cancer Care, the National Council for Palliative Care and Sue Ryder, Macmillan Cancer Support is campaigning for the White Paper to support the principle of free social care for all patients who are on an end of life care register - which is the way a GP identifies care for a dying patient.

I realise that in this difficult economic climate, the NHS must improve care whilst also finding efficiency savings. The solution is not to limit access to support. It is more expensive to care for someone at the end of life in hospital than in the community. There needs to be better partnership working between policy-makers, the NHS, local authorities and social care providers to find more cost-effective ways of delivering high quality health and social care for people at the end of life.

How we treat people at the end of life is the mark of our society and we only get one chance to get it right. It is time to forget about taboos, to find out what people's end of life wishes are and to act now to improve the system so that these can be respected. If we don't, people will continue to die alone in hospital unnecessarily.

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