I have commented often (for instance here, here and here) on the shameful way the Liverpool Care Pathway has been used in the NHS, and I reported (here) that the use of the pathway in the NHS was to be scrapped.
Finally perhaps a few comments from Dr Patrick Pullicino, a consultant neurologist and professor of clinical neuroscience at the University of Kent, one of the pathway's most serious (and much maligned) critics:
"The Liverpool Care Pathway was a genuine attempt to improve the management of patients who are thought to be at increased risk of dying. The fact that the Neuberger report found major problems with the LCP and recommended it is abandoned shows how difficult it is to treat this group of patients.
"Firstly, we have to abandon labelling any patient or patient group as 'dying.' The failure of the LCP has brought to light that the diagnosis of 'dying' cannot be made scientifically. To falsely label the patient as 'dying' is dangerous, as it leads to self-fulfilling prophecies. . .
"It is also important to initiate a lot more research in this area, as most of the research to date is on cancer patients in hospices and not applicable to general hospital patients."
Knowledge that a patient is in a poor prognostic group or at high risk of dying must immediately be shared with relatives, medical staff and the patient if he or she can understand it, says Dr Pullicino. Secondly, all possible ways of treating the patient to improve their clinical condition must be openly discussed and second opinions sought if necessary.
Thirdly, a decision has to be made whether to treat aggressively or not. The patient's consent should be sought on any change of care plan. A recurrence of the withholding of fluids or using sedatives as a "chemical cosh" must never be allowed to occur.
The failure of the LCP also reflected badly on using a multidisciplinary team to take a central clinical decision about a patient's care without their consent, says Dr Pullicino. This reflected the shortcomings of the Mental Capacity Act, on which the framework of multidisciplinary team decisions was based. Diagnosis by multidisciplinary team needed to be re-examined and the Mental Capacity Act needed to be reviewed.
"A fundamental issue on which the LCP fell down badly was the issue of 'dignity.' The LCP was 'sold' on the basis that it was the ultimate method of providing 'dignity' for the dying patient. . .
"I think we have to look carefully again at what 'dignity' means for the patient him- or herself. 'Dignity' is defined as 'the state of being worthy of honour or respect.' To be worthy of respect a person must be able to make decisions for themselves as long as possible, particularly with regard to treatment.
"When my wife was very ill and dying of cancer, she repeatedly refused opiate infusions, despite the fact that she was in pain, as this clouded her ability to talk to her children for as long as possible. That to me showed much bravery, and more than anything else, allowed her to show her dignity."