Families 'kept in the dark' as doctors make life-or-death decisions
One in four families are not informed when doctors decide that a patient in hospital is dying under a widely used NHS scheme for palliative care, a national audit has found.
Less than half of terminally ill patients and their relatives are offered religious or spiritual support in their final days and hours, while a quarter of doctors are not being trained within hospitals to deal with dying patients.
The audit, seen by The Times, comes after the NHS was accused of having a “tick-box culture” of care that defines patients as dying without questioning whether they might recover.
The criticism relates to the Liverpool Care Pathway (LCP), which is endorsed by the Government and many healthcare professionals as the best way to improve treatment for dying patients with cancer or other illnesses. About 20,000 people are estimated to die each year while being cared for under the guidelines.
Under the scheme, doctors and nurses collectively agree that there is no possibility of recovery. They then remove beneficial medicines and invasive medication, such as intravenous drips. They may also sedate the patients and withhold food and drink.
However, a group of leading doctors has warned that the LCP may lead clinicians to focus too much “on the outcome of death”, when some patients might recover.
Peter Millard, Emeritus Professor of Geriatrics at St George’s Hospital Medical School, University of London, among a group of doctors who have publicly criticised the LCP, said: “The risk as this is rolled out across the country is that elderly people with chronic conditions like Parkinson’s or respiratory disorders may be dismissed as ‘dying’ when they could still live for some time. If patients tell their doctors that they wish to die at home, that shouldn’t be taken as an excuse not to treat them in hospital if their condition deteriorates but they still might recover with proper care.”
The National Care of the Dying Audit found that in hospitals where the pathway was used, nearly nine out of ten patients were made comfortable in the 24 hours before death, and checked at least every four hours to make sure that they were not having medication or fluids that could do more harm than good.
But the guidance is to be updated this year to remind healthcare staff to improve communication with patients and relatives and to reassess regularly the complex decisions made at the end of life so that people can achieve a dignified and painless death.
The audit, by the Marie Curie Palliative Care Institute in Liverpool and the Royal College of Physicians, obtained details from 155 hospitals in England of the deaths of almost 4,000 patients treated on the pathway last year. Of these, 39 per cent had cancer and 61 per cent had other conditions, including pneumonia, stroke, organ failure or dementia. The average age of patients was 81, and they were cared for on the LCP for an average of 33 hours before death.
The audit found that 88 per cent were prescribed drugs in anticipation of the symptoms or pain that they may develop as they neared death.
A total of 83 per cent of patients either did not need intravenous medication or fluids or had them withdrawn because they were judged to be doing more harm than good, while 37 per cent were given sedatives. Mostly these were given in low doses, but the trusts prescribing relatively high doses regularly “need to review their practice”, the audit adds.
At least 40 per cent of patients were reported as being aware that they were dying, but details were not available for another 39 per cent.
Although relatives or carers were informed of the plan of care in 72 per cent of cases, and told “that the patient had entered the dying phase” in 76 per cent of cases, “there is still room for improvement”. Professor John Ellershaw, director of the Marie Curie institute, said that the pathway was used when a clinical team led by a senior doctor felt they could no longer cure a patient, but could make them more comfortable. However, the guidelines were never intended as a “one-way street” towards death and did not recommend continuous deep sedation or the withdrawal of fluids or medication. Patients should be reassessed every four hours.
Before the LCP, palliative care specialists were often called when a patient was dying, only to find relatives “confused, angry and distressed”, he added. “That three quarters of relatives and carers are now told what’s going on is encouraging, but we don’t know what’s happening in the remaining cases.”
He added that patients and their carers should be offered spiritual or psychological support, for example from a priest or counsellor, if they wanted it. The audit found that a patient’s spiritual needs were reported as being assessed in only 30 per cent of cases.
End-of-life care was the cause of more than half of NHS complaints about acute hospital care between 2004 and 2006. The Marie Curie Cancer Care charity welcomed the findings but called for patients and carers to be better informed and consulted on decisions made by doctors and nurses, and said that extra funding promised by the Government for palliative care needed to be properly ring-fenced.
Jonathan Potter, director of clinical standards at the Royal College of Physicians, who was also involved in the audit, said: “Much improvement is required within busy hospital schedules for communication with and support for relatives. If we can get this right, it would make a huge difference to patients and their families.”
Joyce Robins, of the campaign group Patient Concern, said she was reassured by a new version of the pathway. “We were very concerned that the LCP had been oversimplistic, a tick-box list of symptoms to say people were dying,” she said. “But the new version is transformed and is so much better. If it is rolled out and applied properly across the NHS, there would be nowhere to hide for healthcare staff who didn’t follow it.”
The Liverpool Care Pathway
•The pathway was designed in the late Nineties to help to improve the care of patients in their dying hours and to ensure that they were not being “overmedicalised”
•Originally developed by the Marie Curie hospice in Liverpool and a team from the Royal Liverpool and Broadgreen University Hospitals Trust, the pathway is now used in more than 220 hospitals, 320 care homes and 100 hospices in Britain
•It was recommended for use in the NHS by the National Institute for Health and Clinical Excellence in 2004, and it was endorsed as best practice by the Department of Health’s end-of-life care strategy last year
•It offers health professionals guidelines on caring for the dying, including removing unnecessary medication and treatments that no longer benefit patients to make them more comfortable in their final hours
•The pathway recommends that a patient’s condition is regularly assessed, at least every four hours, and that medical and nursing staff should “stop, think and change” the level and type of care according to the needs of the individual
•It also recommends that the situation should be discussed with relatives and if possible with patients themselves
•Patients should be removed from the pathway if the healthcare team treating them considers that they are no longer close to death
•Originally developed as a way to care for cancer patients towards the end of their life, the pathway has been adapted to apply to all patients who are close to death, no matter their illness
