The Liverpool Care Pathway (LCP) attracted a great deal of publicity following publication of an Independent Review in July 2013. With the Government response due this autumn, this article explores:
- the key recommendations from the Independent Review
- a reminder of the interim measures that should be implemented in hospitals and in the community
- the areas the Government response will be tasked with addressing
- the interaction with "serious medical treatment"
The Independent Review Recommendations
MP Norman Lamb, Minster of State for Care Support, asked Baroness Julia Neuberger to chair a Panel tasked with conducting an independent review in relation to the use and experience of the LCP in England. This followed alarming stories in the press and broadcast media about the use of the LCP; stories which had much in common with the complaints leading to the Mid Staffordshire Public Inquiry.
Key issues identified in the review included – specific gaps in the evidence on the LCP; lack of consistency in documentation; the difficulty in diagnosing when a patient is actually going to die; concern about clinical decision making and accountability (particularly 'out of hours'); patient consent and best interests; communication and lack of relatives/carers involvement; hydration and nutrition; sedation and pain management; CPR & DNAR orders; perceived lack of care with compassion; and staff availability.
The Independent Review detailed 44 recommendations. The key recommendations include:
- the use of the LCP should be replaced within the next 6-12 months by an 'end of life care plan' for each patient
- a general principle that a patient should only be placed on the LCP (or a similar approach) by a senior responsible clinician in consultation with the healthcare team
- unless there is very good reason, a decision to withdraw or not to start a life-prolonging treatment should not be taken during any 'out of hours period'
- an urgent call for the Nursing and Midwifery Council to issue guidance on end of life care
- a new system-wide approach to improving the quality of care for the dying.
Whilst the use of the LCP is being phased out, it is imperative that people who are dying continue to receive good end of life care. Norman Lamb, MP, wrote to all NHS Trusts and NHS Foundation Trusts outlining the action to be taken following the Independent Review. He asked all Trusts to:
- undertake a clinical review by a senior clinician of each patient who is current being cared for under the LCP or similar pathway to ensure that they are receiving appropriate care and, where possible, that their family is involved in the decisions about end of life care
- to assure themselves that a senior clinician is assigned as the responsible clinician to be accountable for every patient in the dying phase now and in the future
- to ensure that they provide the option of an independent assessor to review complaints about the LCP or similar pathways (to support this the Department of Health will publish a list of independent experts who will be available to patients, families and Trusts)
- to appoint a Board member with responsibility for overseeing any complaints about end of life care and for reviewing how end of life care is provided.
In addition, NHS England has issued interim guidance for doctors and nurses
- For all end of life patients:
- All end of life patients should be assessed regularly and frequently so an end of life plan can be made or adjusted, taking into account the patient's wishes (where known) and the family's views.
- Communicate with the patient and family/carers about any concerns about the LCP or end of life care plan.
- Continue to pay attention to, and assess symptom control and comfort measures (including oral fluids and good mouth care), communication with family/carers, provision of psychological, social and spiritual care, alongside any other treatment.
- For patients currently on the LCP or other end of life pathway:
- Ensure a consultant review of the decision to remain on the LCP/end of life pathway (ideally by a consultant who best knows the patient).
- Ensure the patient's family is aware the patient is on the LCP/end of life pathway.
- If the patient remains on the LPC/end of life pathway – continue with regular assessments.
- For patients not on the LCP or other end of life pathway, but
who are likely to die in the next few hours/days
- Where possible ensure that the family are warned so that they have time to prepare themselves.
- Ensure that any decision to put any patient on the LCP/end of life pathway is made only by a consultant who best knows the patient following face to face assessment, in consultation with the patient (wherever possible) and family/carers and other members of the MDT.
- For patients in the community, including care homes:
- Ensure that the family are warned if the patient is likely to die in the next few hours/days so that they have time to prepare themselves
- The patient must be assessed and the decision for the patient to remain on, or be put on the LCP/end of life pathway must be reviewed by the responsible GP in consultation with the patient (wherever possible), family and specialist palliative care / community nursing team.
The guidance is focused on the LCP however it is recognised that many Trusts have their own integrated end of life pathway. It is important to note that neither the Independent Review nor the guidance from NHS England has statutory force. However, it is best/good practice guidance, based upon a comprehensive review of the current frameworks. Therefore, whilst it would be open to Trusts to divert from the guidance they should have good reason for doing so. One example may be where the Trust is satisfied that the concerns raised in the Independent Review are being addressed by the Trust's own procedures, but just in a different manner to that envisaged within the guidance.
The Government Response
On 30 August 2013 NHS England announced that 'A Leadership Alliance for the Care of Dying People' (LACDP) is being set up under the chairmanship of Dr Wee, National Clinical Director for End of Life Care at NHS England. The LACDP will be tasked with creating and delivering the knowledge base, the education, training and skills and the long-term commitment needed to make high quality care for dying patients a reality, not just an ambition.
NHS England, the Care Quality Commission , Department of Health, General Medical Council, Health Education England , NHS Improving Quality, the Nursing and Midwifery Council and the National Institute for Health and Care Excellence have already signed up to join the alliance to:
- support everyone involved in the care of people who are dying to respond to the findings of the review
- be the focal point for the system’s response to the findings and recommendations of the LCP review
- provide guidance on what needs to occur in place of the LCP
- consider how best the health and social sector can address the recommendations in the review about the accountability and responsibility of individual clinicians, out of hours decisions, nutrition and hydration and communication with the patient and their relatives or carers
- map existing guidance, training and development, as a prelude to considering how this impacts on the care of dying people and the circumstantial factors that might affect the adoption of good practice.
The LACDP will engage extensively with both professionals involved in caring for dying people as well as individuals themselves and their families and other carers to gather views and ideas on good practice in caring for someone in the last days and hours of life.
The outcome of the response should provide NHS bodies with clear guidance on implementing sensitive and robust end of life care that will provide clarity for clinicians and gain the confidence of the public.
What about serious medical treatment?
The interaction between end of life care pathways and serious medical treatment is a complex one. The Court of Protection has produced a Practice Direction (9E) regarding court proceedings linked with serious medical treatment which is defined as:
"treatment which involves providing, withdrawing or withholding treatment in circumstances where…the treatment, procedure or investigation proposed would be likely to involve serious consequences for the patient… Serious consequences are those which could have a serious impact on the patient.”
Interpretation of PD 9E is a hotly debated topic; on a strict reading, it suggests that all decisions regarding serious medical treatment (i.e. those which have serious consequences for the patient) have to be determined by the Court (notwithstanding the fact that the family and healthcare professionals may be in agreement).
It is recognised that this has the potential to have a huge impact on modern healthcare practice, where it is acknowledged that many decisions regarding serious medical treatment (as defined by PD 9E), including those involving the withdrawal of life-sustaining treatment, are taken on a daily basis by healthcare professionals involved with patients who lack capacity, without the involvement of the Court.
However, at the moment, there has not been any definitive case law which assists in interpreting the Practice Direction and it remains a “grey” area. Therefore, it is not possible to set out any general principle which will determine which cases need to be referred to court and which do not.
What is clear is that any decisions involving serious medical treatment should trigger a consideration as to whether, in all the relevant circumstances, that matter should be referred to the Court. A number of factors have to be weighed in the balance, including (but not limited to), the patient’s overall prognosis, whether it is anticipated that the patient will die imminently notwithstanding the proposed treatment, views of the family, futility of the treatment, burden and intolerability of the treatment, patient’s awareness of their situation and how the decision will impact them.