Liverpool Care Pathway (LCP)

This was developed by the Marie Curie Cancer Care charity at its hospice in Liverpool during the late 1990s. It was originally developed to support practitioners on acute wards at the local hospital, however it was recognised as a best practice tool in the NHS Beacon programme in 2001. Following this, it was included in the NHS End of Life Care programme in 2004. It is often referred to as the ‘LCP’.

Initial assessment is by doctor and nursing teams and involves the patient and family taking a full and active part in communication. Information is given to relatives regarding facilities and support available, with consideration being made of faith, culture, values and beliefs. Symptoms are managed and unnecessary medication is stopped.

Ongoing assessment is then started and can be undertaken by any member of the team as appropriate. There are core goals of care to be achieved:

This pathway offers guidance on achieving high-quality care in the last days of life as well as facilitating documentation of care that has been achieved. It is completed by all members of the care team and replaces medical, nursing and other uniprofessional notes, and becomes the central document of care for both the patient and the family.

The pathway is started when a patient is diagnosed as dying and focuses on goals to be achieved for high-quality last days of life care.

Four-hourly assessment of the patient and family will establish if a goal is achieved (A) or, if it is not achieved, this is referred to as a variance (V).

Looking at Mr Smith’s written record in Table 16.1, we see he was pain free and not agitated at 08.00 since it is indicated that these two goals had been achieved (A). However, at 12.00, we see there were signs of a variance (V) away from goals (a) patient does not have pain and (b) patient is not agitated. This means Mr Smith was in some way displaying signs of both pain and agitation.

Any variance must be documented more fully on the ‘variance analysis sheet’, so we would expect to see something like the following written at 12.00:

Whenever a patient is recorded as having a variance (V), it is important to return soon afterwards to see if the care intervention has helped. So, for example, we might expect the next variance box to look something like this:

Gold Standards Framework

The Gold Standards Framework (GSF) was developed by Dr Kerri Thomas who, at the time, was a General Practitioner (GP) facilitator with Macmillan Cancer Relief. It was originally developed to assist GPs to work with the dying and their families, ensuring good symptom management was achieved. The framework includes the core themes of communication, coordination, recognising dying and symptom management. Key parts of the framework are three triggers for supportive and palliative care:

The GSF has now been introduced into care homes nationally and is currently being adapted for use in the acute hospital setting.

Preferred Priorities of Care

Understanding what a patient wants is very important when providing holistic care. The Preferred Priorities of Care (PPC) document was originally developed by Marie Curie Cancer Care to help focus attention on what is a priority for the patient; what it is they want and hope for. It is now kept up to date by the Preferred Priorities of Care Review Team (2011) and this latest version is available from the National End of Life Care Programme Website. Very often you will see families speaking out for a patient. They mean well and may say ‘He won’t want to go into hospital’ or ‘He wouldn’t want us upset by him dying in the house’. But how can we be sure this is what the patient wants? Instead, we need to be clear about what the patient wants, as well as understanding what is important to the family. Sometimes families can express their own fears and not the patient’s wishes. So what they may be saying to you is ‘I will feel so guilty if he goes into hospital’ or ‘How will we live in this house if he dies here’. The PPC contains various sections and supports patients in thinking though difficult issues and talking about the future.

Advance care planning

Planning ahead can help to avoid decisions being made in a crisis when a patient or family may be very distressed. An advance care plan (ACP) includes anything that helps towards having a plan that is clear to all those involved in the care of patients. It can include a PPC document, written notes about discussions with patients and families, a ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) order and an ‘advance decision to refuse treatment’ (ADRT) order. Even a GP letter may contain details of what has been discussed with a patient and may include their future wishes.

Remember that it may be difficult to have some of these conversations with patients about refusing care, not being resuscitated and what they want their funeral to be like. But it can be far more distressing for the professional care team to work with families who are angry and distressed, where difficult conversations have not taken place or when a family is feeling they do not have any choices. Many of the conversations professionals can have with patients and family members will not require filling in a form. They are very important since they start to encourage individuals to think about their wishes and how they might communicate their choices, and are often referred to as general care planning.