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.

Terminal agitation

Restlessness, confusion and delirium are also terms associated with agitation in the last days and hours of life. We refer to terminal agitation, but the words and terms can be used interchangeably. It is important to understand why agitation occurs since 85% of patients with cancer will experience some degree of agitation, restlessness, delirium or confusion in the last weeks of their life (Macleod 1997). Biochemical changes that occur in the body as end of life approaches can affect the body’s normal ability to filter and process stimulation and information received from the external environment, from within the body and from unconscious memories (Stedeford 1994). This means sensations and stimulation are not processed in the usual way and can become all muddled up, making it difficult for a patient to work out where the stimulation is coming from. For example, a simple noise may become frightening or a nurse call bell ringing may be interpreted as an alarm and may lead to a patient to try to get out of bed in fear. A full bladder might be interpreted as a memory from childhood leading the patient to call out for a deceased parent. A patient may be seen doing repetitive movements. To the patient these are purposeful, but for the family they can appear that the patient is distressed. Knowing about a person’s life, work and hobbies can help to interpret these movements; a patient swinging both arms when lying flat may be playing golf, or circling the arms round each other may be winding wool.

Agitation may start as forgetfulness or changes in behaviour, mood or ability to speak words. It can often be a quick onset over just a few hours and sometimes more acute at night time with a complete reversal of sleep/wake patterns. You may see this if you work nights within your practice placement.

Accurate assessment of these changes is important by the whole care team and it is important to consider if there is anything that is reversible that might be causing the agitation. For example, a patient may be in withdrawal of nicotine if they have not been able to smoke a cigarette as they have deteriorated. Actions to reverse causes include replacing nicotine using patches, emptying the bladder, managing constipation or lowering a raised blood calcium level (Fig. 16.2). Once these have been tried, if the patient is still agitated it will probably mean that they are dying. It is always important to try to reduce anything that may be causing the agitation, even if this is the terminal phase, to reduce distress for the family. When caring for a patient with terminal agitation, it is important to keep stimulation in the environment to a minimum; encourage family members to read quietly at the bedside or bring in some favourite calming music to play softly.

Fig 16.2 Checklist for terminal agitation.

Medication is also important and at this stage of a patient’s life would be given subcutaneously. Particular care must be taken to managing the subcuataneous site since an agitated patient can easily dislodge a butterfly. Sometimes a subcutaneous site can become sore and this can be a source of distress, especially if it is in the upper arm and the patient is nursed on their side.

Terminal secretions

Noisy secretions occur in approximately 80% of patients at the end of life (Hughes et al 2000) and are often referred to as the ‘death rattle’. This is more distressing for the relatives than the patient who, apart from having noisy breathing, can often be very settled and appear pain free. The secretions occur due to pooling of fluid in the pharynx which the patient does not have the energy to remove. This fluid can be saliva, produced as a result of an infection, pulmonary oedema or gastric reflux (Twycross et al 2009).

Nursing care is primarily to explain to the family why the secretions have occurred. Repositioning the patient’s head or lying them on their side with a pillow supporting their head can help to drain secretions. Occasionally, oropharyngeal suctioning can remove the secretions. Medication given subcutaneously needs to be started as soon as the secretions are noticed for it to be really effective. Hyoscine butylbromide or hysocine hydrobromide are the drugs of choice since they work as smooth muscle relaxants and have antisecretion effects. With good care, secretions can be reduced in half to one-third of patients in the last days of life. The choice of which of these drugs to use is reliant on local prescribing guidelines.