The training, the training, the training...
This is from 'The Liverpool care pathway: what students should know' published in Student BMJ –
No matter where you are in your medical training, you will most likely have heard of the Liverpool care pathway (LCP), the protocol used in the United Kingdom to facilitate end of life care. After months of bad press the government ordered its review earlier this year. “More Care, Less Pathway,” the review presented by Baroness Neuberger in July, wasn’t entirely negative, accepting that the LCP could “provide a model of good practice for the last days or hours of life for many patients,” and that, “before the widespread introduction of the LCP into hospitals, the care that patients received was variable and there were many examples of poor care.” However, Neuberger said that the application of “generic protocols” such as the LCP to the care of all dying patients is inappropriate, and in the review’s damning conclusion, “it is clear that in the wrong hands, the LCP has been used as an excuse for poor quality care.”It is clear that it is not accepted that it is the case that people were inducted onto the LKP who were NOT dying and perished on it.
The aim of the pathway was to provide dying patients with a better death wherever they were being cared for. However, no randomised controlled trials were performed to determine what the pathway should consist of, and there was no research carried out after its development to see how it compared with care without the pathway.
Once implemented, doctors and nurses used the LCP for patients who were expected to die within hours or days. First, dying must be diagnosed by a senior doctor—this can be difficult because it is impossible to predict exactly when someone will die.
Being put on the LCP meant a switch in emphasis of care to focus on alleviating bothersome symptoms, which are often similar at the end of life irrespective of the condition from which the patient is dying.
It is confirmed that no randomised clinical trials were performed in a controlled environment with subjects who have provided consent to participate in them. It is accepted, then, that the whole LCP experience has, in effect, been a clinical trial with subjects who have NOT provided consent to participate in them. Many or most were inducted onto it without prior knowledge and ALL without knowledge of participating in what was, effectively, a clinical trial.
Human clinical experiments are covered by the Nuremburg Code. Permission must be sought. It is not a matter of acting in 'best interests'.
This is Research governance in health and social care: NHS permission for research and development involving NHS patients (second edition) –
Information for patients involved in a clinical trial
It is the responsibility of the ethics committee to review the information given to patients recruited into research. This is to ensure that informed consent can be obtained. The NHS does not normally need to consider requiring additional information to the patient.
“[The LCP’s] fate serves to warn us of the dangers of implementing tools that are not properly evidence based,” write Katherine Sleeman and Emily Collis in a recent BMJ editorial. It is a “cautionary tale” they say— if used appropriately, “the LCP can provide a model of good practice for the care of dying patients.” And although the pathway has improved the deaths of some patients, it has also been “the focus of profound grief and regret for others.”It is clear that it is still not accepted that the cases which have been reported and, therefore, the countless others not reported contain any reliability of substance and evidence: they are 'anecdotal' just as Earl Howe always claimed them to be!
So where does this leave doctors, nurses, and patients? It is not yet clear whether scrapping the pathway will do more harm to patient care than good. “Ultimately, the decision to phase out the LCP was made on the basis of little more than an accumulation of anecdotal evidence,” they continue. “The recommendation by the panel to phase in condition specific guidance over the next six to 12 months should therefore be approached with caution. It is imperative that we do not repeat the same mistakes, and introduce new guidance without first testing it properly.
|- Nursing Times|
The Nursing Times says PRN prescriptions for the four main symptoms are:
Pain - Diamorphine
Nausea and vomiting - Cyclizine
Agitation - Midazolam
Respiratory tract secretions - Hyoscine hydrobromide
Speciality Training Curriculum for Palliative Medicine actually advises that valid consent
is a process that may culminate in, but is not limited to, the completion of a consent form.and to
Where appropriate, safely prescribe drugs beyond their product licence, or without a product licence, ensuring correct procedures are followed including gaining appropriate patient consent.
Of course, after a shot of midazolam, the patient will pretty much agree to anything...
But that is not permission to participate in a clinical trial.
Further reading -