Liverpool Care Pathway – Intrusion By Stealth

The Catholic Medical Quarterly -

At the CMA Conference in London last March, Dr Philip Howard suggested that palliative care has been transformed by the secular world around us in the last few years. On the wards there has been a change in attitudes with the introduction of terminal care pathways, the most familiar of which is the Liverpool Care Pathway (LCP).

We know that prognosis is not accurate and we often get our predictions of prognosis wrong. A tool based upon prognosis is therefore dangerous as it may become a decision that a person will die. Often on such pathways triple therapy is used (with morphine, midazolam a sedative and a hyoscine which is a drug to dry secretions). This means that the patient, who may or may not be dying, is given drugs that may hasten or even cause death. This is particularly true if hydration is also withdrawn. On such a regime the patient cannot survive. 

Nothing is ever a foregone conclusion. We are not Gods: we cannot tell with certainty, but must work with the situation and the individual. We cannot play God: we cannot act on assumptions.

Lady Jane Campbell said in a Lords debate:

“I want to guarantee that you are there supporting my continued life and its value. The last thing I want is for you to give up on me, especially when I need you most." 

It is better to cling to hope than to succumb to despair. Pilgrim is urged on across the Slough of Despond; these are the tests along the way he must overcome. If you fall at the hurdle, you pick yourself up and soldier on. It ain't over till it's over.

But a dark shadow is stalking our hospitals, our care homes, and intruding into every compartment of life. The LCP end-of-life protocols have even found their way into the unlikely setting of The St. Mungo Project for the homeless in London.

These are dark forces, indeed. This intruder has even gained entry to our homes, not foot-in-door like unwanted hawker, but welcomed in with district nurse and health visitor.

Like an amoral tidal wave that has swept the land, the right to death is become paramount over the right to life.

The Nursing Times has published a discussion document on Nursing Practice and District Nursing -

Quality indicators to measure end-of-life care

Author Ben Bowers is professional lead community nursing and Queen’s Nurse, Hertfordshire Community Trust. Abstract Bowers B (2012) Quality indicators to measure end-of-life care. Nursing Times; 108: 34/35, 21-22.This article gives examples of how to use quality indicators to demonstrate and improve effectiveness in supporting people with their end-of-life care needs. 

District nurses deliver a range of nursing care to adults in their own homes. However, practitioners have not effectively demonstrated the value of this care to primary care commissioners (Queen’s Nursing Institute, 2009). As a result, district nursing numbers continue to decline at a time when there is increasing demand from an ageing population for more care to be provided at home (Royal College of Nursing, 2012). If district nursing services are to receive the resources they need, practitioners must measure and communicate the impact of their care through “quality indicators” agreed with commissioners.

In other words, District Nursing, as a profession, must demonstrate that it is implementing the end-of-life care pathways (such as LCP) required by the DOH in order to take advantage of the CQUIN payment incentives which will pay for the resources district nursing services so desperately need.

Box 1. End-Of-Life Quality Indicators 

Outcome indicator
● The percentage of patients on an end-of-life care pathway who die in their preferred place of care 

Process indicators
● Patients are identified and placed on a recognised pathway (Gold Standards Framework or Liverpool Care Pathway)
● District nurses discuss and record the needs of those approaching the end of life at dedicated multidisciplinary team meetings, preferably monthly but quarterly at a minimum
● The team has a register of all patients for whom they are providing end-of-life care, which includes key information such as preferred place of care
● Symptoms are as well controlled as possible
● Newly requested syringe pumps should be set up within four hours after the decision has been made
● When a syringe pump is set up, out-of-hours services are notified by the end of the shift
● Carers have been offered information and advice on practical issues
● Carers felt supported

Source: Davies et al (2011); Department of Health (2011; 2009b); Bowers et al (2010) 

“Patients are identified and placed on a recognised pathway (Gold Standards Framework or Liverpool Care Pathway)”

This is MAX PEMBERTON in The Telegraph:

No pill or potion is a

match for compassion

I have often seen this happen; patients you are convinced will follow a clear, definable illness-trajectory prove you wrong. It's this unpredictability that makes medicine so fascinating; the fact that the body has a remarkable capacity to confound expectations. Even for those with a terminal illness, there can be no certainties. It's for this reason that I despair of the Government's new treatment pattern for palliative care. The "Liverpool Care Pathway" involves a series of tick-box assessments, which aim to assess the likelihood of death in patients deemed to be terminally ill in hospitals, nursing and residential homes.

“District nurses discuss and record the needs of those approaching the end of life at dedicated multidisciplinary team meetings, preferably monthly but quarterly at a minimum”

It is a statistical certainty that every person in their elder years is 'approaching the end of life'. Old age is a 'terminal condition'. If a person of elder years falls seriously ill, however, that does not mean that they are terminally ill; it means only that they require that much more care and attention to improve or to maintain their condition.

“The team has a register of all patients for whom they are providing end-of-life care, which includes key information such as preferred place of care”

 They have your card marked.

"Symptoms are as well controlled as possible 

"Newly requested syringe pumps should be set up within four hours after the decision has been made

"When a syringe pump is set up, out-of-hours services are notified by the end of the shift " 

Pre-emptive care and acting on the assumptions of LCP guidelines-
If the symptom is present, prescribe.
If the symptom is not present, prescribe in any case -

"..ensuring anticipatory drugs are available at home (Bowers et al, 2010)."

"Carers have been offered information and advice on practical issues 

Carers felt supported"

 Carers have been advised that their loved one has been 'diagnosed' as dying and that the protocols of the end-of-life pathway are being adhered to. In practice, this policy is paid only lip-service and patient and carer are kept in ignorance.

Measuring quality
Community services have started to demonstrate quality to commissioners through agreed patient safety indicators and patient satisfaction questionnaires.

Two examples are reducing the percentage of people who develop a pressure ulcer or a catheter-associated infection. By focusing on these issues, practitioners have become aware of how to apply good practice to prevent adverse incidents. However, reducing the frequency of adverse events does not directly measure whether patients received the right care to achieve optimum outcomes (Jull and Griffiths, 2010).  

Patient satisfaction is a vital measure of quality. Current questionnaires tend to ask patients whether they are happy with practitioners’ mannerisms and care. These are important in identifying whether people have been treated with respect, dignity and felt involved in decisions. However, generic questionnaires often do not identify whether nurses have supported what matters most to patients receiving care at home.

There is certainly more work to be done in agreeing quality indicators that have value to commissioners, patients and practitioners. There are common features that help when looking for indicators.

The QNI (2011) found the public want district nurses to be caring, kind and skilled to coordinate and meet their care needs. Commissioners want care to be clinically effective and measurable, cost-effective and meaningful for patients.

While practitioners understand the need for greater efficiency, they want to deliver effective care focused on meeting patients’ holistic needs (Davies et al, 2011). Quality indicators can encompass these shared values when they are jointly devised by clinicians, patient representatives and commissioners (Raleigh and Foot, 2010).

In regard to end-of-life care pathways, the patient is no longer around to complete the patient satisfaction questionnaire. The only measure, therefore, may be: Did the patient depart this world in their preferred place of care?

"While carer questionnaires can be used after patients have died, research shows that feedback can be influenced by feelings of grief, regrets and past experiences unrelated to end-of-life care support"

The predictable certainty of the care pathway, evidenced to have been religiously adhered to, ensures that - whatever the perception may be or may have been - guidelines are demonstrated to have been followed and boxes have been ticked.

The Commissioners, the Commissioners, the Commissioners...