Tom Hughes-Hallet 

At home, with cat, kids and morphine

Tom Hughes-Hallet: The NHS must provide better care for those with incurable illnesses.
  
  


One of our Marie Curie nurses recently cared for a woman in her early 60s who had advanced lung cancer. She was very ill, and short of breath. But her pain was controlled, and she wanted to remain in her bungalow, with her family, until the end. Our nurse helped make that possible.

At home, the patient was able to relax. Her children and grandchildren were in and out all the time, and her cat was curled up on her pillow. The woman faded away painlessly over a 12-hour period, dropping first into the semi-comatose state that is common as death approaches. In her last hours, along with the Marie Curie nurse, there were 13 people in the room, talking, joking and remembering the patient.

Properly managed, death can be peaceful and dignified - a meaningful end to life.

Around 410 people will die of cancer in the UK today. Unlike the woman described above, most will have no choice over their place of death.

Today the House of Lords will be debating how our society cares for the dying, an area recently highlighted by this newspaper. Studies show that most people, if terminally ill, would wish to be cared for and to die in their own homes. But just one patient in five ends their life there: the majority die where they would least wish to - in a hospital.

Only a small fraction experience the kind of death they would choose. Many lose control over the final stages of their lives, causing additional distress and trauma. As a society, we are failing them. But it doesn't have to be this way.

Last October Marie Curie Cancer Care launched a project in Lincolnshire, as part of our Delivering Choice programme, with the objective of doubling the number of people who can choose to die at home. We are working in partnership with the NHS, the voluntary sector including the British Heart Foundation, and other health and social care professionals to develop the best of existing services and to pioneer new ways of providing care. The project aims to ensure that choice in place of care and death is available and known to all.

The government is committed to giving more people the choice of dying at home. But we are yet to see the promise turn into investment. Every day that passes means more people dying without the dignity they deserve. It's time to give every person the choice they should have over where they die.

Marie Curie nurses work with thousands of patients at the end of their lives. They care for almost half of all cancer patients who die at home. Their presence enables families and carers to get a proper rest - and also a sympathetic ear. We aim to ensure that people facing death are able to experience the best possible quality of life. We give people a choice.

There is now growing recognition that something must be done to rectify the inequity in the provision of palliative care - care for patients whose disease is not responsive to curative treatment - available through our health system. In 2003 Sir Nigel Crisp, chief executive of the NHS, said that "better care for the dying should become a touchstone for success in the modern NHS". And today the House of Lords will be debating a motion tabled by Baroness Finlay on the availability of palliative care.

At Marie Curie Cancer Care we welcomed the government's general-election pledge to double the investment going into palliative care services, giving more people the choice to be treated at home. We want to offer Marie Curie Cancer Care's experience and help to meet this challenge. Now is the time for action.

Of course, the answer lies in additional resources, but I believe that in practical terms most will be achieved through a strong partnership between the voluntary sector and government. As the National Audit Office highlighted in its recent report Working with the Third Sector, a collaborative approach between the government and the voluntary sector is central to releasing public funding to best effect - so as to harness the expertise of local specialists in order to deliver positive change for patients.

We have asked the government to work with us on a further 11 projects around the UK. Each will mirror the work in Lincolnshire - helping make sure everyone can experience high-quality care and support, and have more choice over where they die.

Surely it is society's responsibility to ensure that everyone can die with dignity. That means they should receive the proper care and support they deserve. Our Marie Curie nurses understand what it takes and can provide for the needs of the terminally ill. I believe passionately that failing the dying must become a thing of the past.

· Tom Hughes-Hallett is chief executive of Marie Curie Cancer Care

info@mariecurie.org.uk

 

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