Lady Neuberger to investigate claims on care for dying patients: Care services minister, Norman Lamb, appoints peer to carry out review of Liverpool Care Pathway after months of denunciations.
The Liverpool Care Pathway for the dying must survive the current controversy because doctors need guidelines to help their patients at the end of life, but possibly stripped of its tainted name, said care services minister Norman Lamb.
Lamb was speaking ahead of his announcement that he has appointed Lady Julia Neuberger, the crossbench peer, rabbi and former chief executive of the health thinktank the King's Fund, to carry out an independent review of the Pathway after months of denunciations and anguished accounts from the relatives of the dying.
Neuberger will sit with a panel of experts, including family members, to oversee investigations into a litany of complaints by bereaved relatives. Some say they were not told their relative was on the Pathway, which is intended to ease a terminally-ill patient's last days by avoiding unnecessary treatment while giving them every palliative care. Others allege that their relative suffered by being denied food and water.
There have also been claims that hospitals were making money from incentive payments to get more people on the Pathway.
Lamb said he had been horrified by accounts of people being denied water. "This is a great distortion of the way it should happen," he said. He wants the review, which will report by the summer, to investigate the practicalities of what was happening in hospitals, but said that the Pathway – or something like it – should not be scrapped.
"I think what everybody signs up to wherever they are in this debate is the need for clinicians to have good guidelines about ensuring a dignified death and doing the right thing at the end of life," he said.
"I think we can get to a point where we can restore confidence not in an artificial, named thing, but in the care of people at the end of life in hospital and that's the critical thing I need to focus on."
The name of the Liverpool Care Pathway, which has become tainted by the allegations, may go, not least because patients and relatives do not understand it.
"I certainly don't want this seen as a re-badging exercise – that's not what it's about – but I do not want patients to be told you're on the Liverpool Care Pathway, or a relative to be told that, because it's an utterly meaningless thing to say to someone at a very traumatic moment," said Lamb.
"This is not a major element of it but it is critical we use language that people – patients and families – understand."
Eve Richardson, chief executive of the National Council for Palliative Care – an umbrella charity for those involved in palliative, end of life and hospice care, which set up the Dying Matters Coalition in 2009 – welcomed Neuberger's appointment. The council is working on aspects of the review.
"There is a real need to ensure everyone receives excellent care at the end of life and to take people's fear away from dying and from the care they may receive in their final days, including through far more open communication about end of life issues," said Richardson.
"There also needs to be a much greater openness throughout society about talking about dying and death, with core end of life training for all staff working in health and social care and the care homes sector, genuine and sensitive discussions with people who are dying or their families about their end of life care and improved information available about dying and how to make your wishes known for all members of the public. There are real dangers of leaving it too late to talk about end of life issues, which is why all of us need to set out our wishes whilst we are able to." The Guardian
The Liverpool Care Pathway for the dying must survive the current controversy because doctors need guidelines to help their patients at the end of life, but possibly stripped of its tainted name, said care services minister Norman Lamb.
Lamb was speaking ahead of his announcement that he has appointed Lady Julia Neuberger, the crossbench peer, rabbi and former chief executive of the health thinktank the King's Fund, to carry out an independent review of the Pathway after months of denunciations and anguished accounts from the relatives of the dying.
Neuberger will sit with a panel of experts, including family members, to oversee investigations into a litany of complaints by bereaved relatives. Some say they were not told their relative was on the Pathway, which is intended to ease a terminally-ill patient's last days by avoiding unnecessary treatment while giving them every palliative care. Others allege that their relative suffered by being denied food and water.
There have also been claims that hospitals were making money from incentive payments to get more people on the Pathway.
Lamb said he had been horrified by accounts of people being denied water. "This is a great distortion of the way it should happen," he said. He wants the review, which will report by the summer, to investigate the practicalities of what was happening in hospitals, but said that the Pathway – or something like it – should not be scrapped.
"I think what everybody signs up to wherever they are in this debate is the need for clinicians to have good guidelines about ensuring a dignified death and doing the right thing at the end of life," he said.
"I think we can get to a point where we can restore confidence not in an artificial, named thing, but in the care of people at the end of life in hospital and that's the critical thing I need to focus on."
The name of the Liverpool Care Pathway, which has become tainted by the allegations, may go, not least because patients and relatives do not understand it.
"I certainly don't want this seen as a re-badging exercise – that's not what it's about – but I do not want patients to be told you're on the Liverpool Care Pathway, or a relative to be told that, because it's an utterly meaningless thing to say to someone at a very traumatic moment," said Lamb.
"This is not a major element of it but it is critical we use language that people – patients and families – understand."
Eve Richardson, chief executive of the National Council for Palliative Care – an umbrella charity for those involved in palliative, end of life and hospice care, which set up the Dying Matters Coalition in 2009 – welcomed Neuberger's appointment. The council is working on aspects of the review.
"There is a real need to ensure everyone receives excellent care at the end of life and to take people's fear away from dying and from the care they may receive in their final days, including through far more open communication about end of life issues," said Richardson.
"There also needs to be a much greater openness throughout society about talking about dying and death, with core end of life training for all staff working in health and social care and the care homes sector, genuine and sensitive discussions with people who are dying or their families about their end of life care and improved information available about dying and how to make your wishes known for all members of the public. There are real dangers of leaving it too late to talk about end of life issues, which is why all of us need to set out our wishes whilst we are able to." The Guardian
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