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Digital forms 'fail on end-of-life care'



MP highlights reports that requests of terminally ill patients are not being passed on to hospices

Data failings are denying terminally ill people their wish to spend their last days at home, an MP hs claimed.

Family doctors are ticking a box on an end-of-life form in line with NHS guidelines but the requests are not being passed on to hospices, Conservative Philip Hollobone (pictured) said.

Three years ago, the NHS introduced digital forms called electronic palliative care coordination systems (EPaCCS), to record and share patients’ choices.

Meanwhile, the NHS promises to provide end of life support to “help you to live as well as possible until you die, and to die with dignity”. The health service’s website reads: “The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care.

“You have the right to express your wishes about where you would like to receive care and where you want to die. You can receive end-of-life care at home or in care homeshospices or hospitals, depending on your needs and preference.”

Harrowing question

But Hollobone has told health ministers that this end-of-life information is not reaching hospices, which are forced to ask the patients themselves – often at a most harrowing time.

Speaking in the House of Commons, he said: “In Northamptonshire, 80% of end-of-life patients die in hospital, whereas 80% of end-of-life patients want to die at home, assisted by the hospice movement. I have discovered that GPs are ticking the end-of-life box on the quality outcomes framework form, but that that information is not being passed automatically to local hospices.”

In reply, health minister Ben Gummer said: “My honourable friend raises a terribly important matter. If that is what is happening in his clinical commissioning group area, it is unacceptable.

“I point him to the work that the government are doing on a paperless NHS to ensure that the kind of bureaucratic muddle he has identified no longer occurs.”

Low rate

Two-thirds of people questioned say they would prefer to end their life at home, but only about 20% do so – one of the lowest rates in Europe.

Leading charities say much more needs to be done, after the harrowing Dying Without Dignity report by the parliamentary and health service ombudsman laid bare the damage done by poor care at the end of life.

It is widely accepted that hospital wards are rarely the best place for a dying patient, but families wishing to move relatives must also battle a complex system of means tested financial help.

Picture from, Open Parliament Licence v3.0

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