What do you think? Government pledge for end-of-life care welcomed by Norfolk families

Hospitals which fail to consult patients and their families over end-of-life care decisions could face legal action under new rules unveiled by North Norfolk MP Norman Lamb yesterday.

The care services minister said a new legal obligation in the NHS constitution would make 'clear and explicit' the right of patients and their families to be informed over end-of-life treatment decisions, including the Liverpool Care Pathway (LCP).

The announcement was last night welcomed by two West Norfolk families who claim their partners were put on the controversial care plan without being consulted or agreeing to it.

It also came as Denise Charlesworth-Smith, who lives in Brookville, near Methwold, yesterday met Conservative peer Baroness Knight who is calling for an independent inquiry to the care plan.

Mrs Charlesworth-Smith has been calling for the government to take action since, she claims, her father was placed on the LCP without any consultation with her family.

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Mr Lamb said: 'I'm deeply concerned when I hear that patients or families are not being involved because it's part of the Liverpool Care Pathway that you should be involved in the decision making process and properly consulted.

'If you as a patient can't been involved, then your loved ones absolutely should be.

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'I have called a round table for later this month that brings patients and doctors together to look at people's experiences and how we can improve it because this should be about guaranteeing dignity at the end of someone's life.'

He added: 'It's about appropriate treatment for them to meet their needs. Sometimes in the final hours of someone's life, their system shuts down and to keep pumping liquid into them when the body can't cope with it can cause unnecessary and inappropriate pain.'

Tens of thousands of people are placed every year on the pathway, which aims to ensure that the 'right type of care is available for people in the last days or hours of life when all of the possible reversible causes for their condition have been considered'.

Roy Cooper's wife Mary died on August 13, after spending eight weeks at the Queen Elizabeth Hospital, in King's Lynn.

Mrs Cooper, from Clenchwarton, was taken to the Lynn-based hospital on June 19 after collapsing with low blood sugar levels and Mr Cooper claims no-one at the hospital explained the care plan to him. The family have complained to the hospital.

Responding the Mr Lamb's announcement, the Clenchwarton resident said: 'It's great news. I think everybody should be briefed properly and it's about time the government took action.

'I also don't think it can't be just one doctor to make the decision about putting someone on the pathway. If you go to court you've got lots of people on the jury - it's not just down to one person to decide someone's fate.'

Terrington St Clement resident Janet Davies also welcomed the announcement by the health minister but added it was already a requirement of the care plan to consult the family.

Her 83-year-old husband, Colin, died from septicaemia on November 8, 2010 after being in the Queen Elizabeth Hospital for a month.

He had been put on the care plan for two days before being removed and dying two weeks later. Mrs Davies believes two days without food and drink played a crucial part in her husband's death.

Meanwhile Denise Charlesworth-Smith has said she hopes the government will make consultation with patients and families about the LCP a legal requirement soon to stop 'legalised euthanasia'.

Mrs Charlesworth-Smith said her 82-year-old father, Phil, was admitted to King's Mill hospital in Nottinghamshire in January with breathing problems and died five days later after being put on the LCP.

She added: 'This whole saga also begs the question, if it is illegal to assist suicide, then why can the NHS play God and do this especially as a family we were not aware of this?'

Marie Curie Cancer Care has also welcomed the proposed new legal right for patients to be consulted on end-of-life care decisions.

But the charity said the government should go further and called for the next independent national audit of the Liverpool Care Pathway to be brought forward.

Dr Geoff Hunnam, medical director and lead for patient safety at the Queen Elizabeth Hospital, said: 'The trust would be perfectly comfortable with the introduction of a legal requirement to consult with a patient's next-of-kin about their end of life care. It is already hospital policy.

'In all circumstances we follow best practice and, where it is in line with a patient's wishes, talk to the next-of-kin before following the Liverpool Care Pathway.

'It is particularly important to do this, as the care is tailored to the person's individual needs and includes consideration of their physical, social, spiritual and psychological needs.'

Last year a report by the Royal College of Physicians found that in 4pc of cases, family members were not told a loved-one had been put on the pathway.

At the beginning of October, 20 medical bodies including the Royal College of Physicians and Royal College of Nursing, released a 'consensus statement' that no single doctor should make the decision to place a patient on the pathway.

The most senior doctor available should make the decision with input from at least one other member of medical staff, they said, because it was 'not always easy to tell whether someone is close to death'.

A spokesman from the Norwich and Norfolk University Hospital said last night: 'It is very important that family members are involved in discussions about the care of their loved one at all times.

'When a patient is dying these conversations can be very difficult and it takes skill and patience to communicate well with families and help them to understand what is happening.'

Meanwhile Andy Burnham MP, Labour's shadow health secretary, said he welcommed the move to strengthen families' rights in end-of-life care.

He continued: 'I support the Liverpool Care Pathway, but it is absolutely essential that it is properly explained to people. Families must be fully involved and consulted at every stage.

'But, while these changes are good as far as they go, I would like to see much more ambition from the Government on end-of-life care.

'Far too many families in England find themselves spending their final hours with a loved-one in a hospital. Many would much rather be together at home or in a hospice. This more personal approach can also cost much less.

'I am disappointed that the Coalition has not proceeded with the proposal of the last Government to amend the NHS Constitution to give people the right to choose to die at home or in a hospice.'

Dr Vivienne Nathanson, director of professional activities at the British Medical Association, added: 'It is already established good medical practice that doctors involve those close to the dying patient about end of life decisions. However, where patients are capable of making decisions, their views about who should be involved in their care must take priority.

'If patients are not competent, decisions should be made by the clinical team in partnership with close relatives. The best interests of the dying patient must be the focus of care.'

Dignity in Dying welcomed the plans to ensure that patients, families and carers, are consulted on end-of-life care decisions.

Sarah Wootton, chief executive of the campaign group, said: 'Respecting a dying patient's wishes is central to ensuring dignity at the end of life.

'Some people may wish to prolong life as long as is feasibly possible, whilst others will not want the dying process to be protracted. A clearer framework for identifying patients' wishes and ensuring that their loved ones are updated will help to alleviate people's concerns and ensure that good practice becomes universal across all care settings.'

Heather Richardson, national clinical lead for Help the Hospices, the UK charity for hospice care, added: 'Having open conversations with patients and their families is a fundamental principle of good care at the end of life.

'Sadly these conversations don't always take place, often leading to unnecessary distress at one of the most vulnerable times in people's lives. This urgently needs to change.'

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