NEW government proposals announced last week will mean that relatives of terminally-ill patients would have to be consulted before a decision to withdraw food or water is taken.

The instruction will be included in a number of proposed changes to the NHS constitution, the subject of a 12-week consultation period which has just started.

The move comes after some patients were placed on the Liverpool Care Pathway — designed to relieve suffering — without their relatives' knowledge.

The LCP was developed at the Royal Liverpool University Hospital and the city's Marie Curie hospice to relieve suffering in dying patients. The scheme sets out principles for their treatment in their final days and hours and acts as a guide to healthcare workers as to the appropriate time to remove tubes providing food and fluid, or when to stop medication.

The method is widely backed by doctors and supporters say it can make the end of a patient's life as comfortable as possible. But its critics have labelled the policy as inhumane.

One West Devon family approached the Times following their experience of LCP — a policy they feel calls for far greater public awareness.

Lorna Westington lost her much loved and respected mum, Phyllis Crudginton, aged 100, in April this year.

Phyllis had lived independently until she was 92. When she began to have problems coping alone, Phyllis came to live with Lorna and with the help and support of her close family, she lived happily at Lorna's house until this spring, despite advancing dementia and increasing frailty.

However, in April, she collapsed with pneumonia and was admitted to Derriford Hospital.

Lorna said: 'I didn't have any silly notions of her recovering. My brother came down from Hertfordshire that night, and the doctor who was dealing with us in A&E did talk to us about LCP, but said he felt she maybe could be given a bit more time.

'They managed to get a line in to re-hydrate her and put her on antibiotics for the pneumonia and by the next day she had recovered quite a bit.'

Within a couple of days, Phyllis had been admitted to a ward at Derriford. However, it soon became apparent that replacing the rehydration line in such a frail patient was not likely to be an option, and the doctors talked to Lorna, her daughter and grand-daughter, about LCP.

Lorna said: 'He portrayed it to us as an easy, quiet passage from life, that it would all happen quickly, like floating away on a cloud in a bed of roses.'

However, after agreeing that Phyllis should be on the LCP, Lorna and her family were distressed and anxious as it appeared that their Nanny was clinging to life, and not experiencing the peaceful, swift end they had expected.

She finally died four and a half days later.

Lorna said: 'We understood she would just slip away — I don't think they expected her to last as long as she did. I just think after all that time looking after her, she must have been thinking, "Why isn't anyone helping me?"

'I really do think she suffered. The fact she couldn't breathe was frightening her. I am not criticising the doctors or anyone else but at the end of the day I have serious reservations about what thoughts must have been in my mum's head as she was dying.

'The word inhumane has been used when people talk about LCP, and I do think that's what we all felt.

'We are not saying anything was done incorrectly, but it was so different to the way it was portrayed.

I am glad there is a consultation regarding LCP in progress and I hope that other families are given a wider picture — not just the rosy one — of what may happen to their loved one when water, nourishment and medication are withdrawn.'

Lorna's daughter Ingrid said: 'All we wanted was what was best for Nanny, but what happened will live with me for ever.

'For some people, LCP has been good, but for us, it wasn't. We were told she wouldn't suffer any anxiety or distress, fear of sickness or choking, but it wasn't like that at all.

'I think we just feel that people should know much more about LCP — I think we would have asked more questions if we had had more knowledge about it; it's not explained properly.'

Karen Grimshaw, associate director of Nursing for Plymouth Hospitals NHS Trust said: 'I would like to offer our sincere condolences to Mrs Crudginton's family for the distress and anxiety felt during a very difficult time.

'The Liverpool Care Pathway (LCP) used nationally, sets the standards for individualised care for a patient in the final days and hours of life.

'It enables the clinical team to provide high quality end of life care for patients and their relatives in order to manage the symptoms patients experience when dying, as far as possible.

 'Sadly, it seems that we were not able to achieve the peaceful death for Mrs Crudginton that the LCP is designed to achieve.

'I would urge Mrs Westington to contact our Patient Advice and Liaison Service so that her concerns and questions can be addressed thoroughly through the appropriate channels.'

According to the Department of Health, as of October 31, 22 organisations have signed a consensus statement supporting and providing clarity about the Liverpool Care Pathway for the Dying Patient, including the Royal College of General Practitioners.

Other organisations include the National End of Life Care Programme, professional bodies, third sector organisations, charities and organisations representing care homes, hospices, social care and palliative care specialists.