Using end of life care pathways for the last hours or days of life

There is international consensus about the importance of achieving a “good death” that is comfortable, dignified, and person centred.1 But controversy persists about the benefits and hazards of using an integrated care pathway to support the care of people who are expected to die soon. National end of life care programmes, in the United Kingdom and internationally, endorse tools designed to improve standards of care for people dying in the community, care homes, and hospitals.2 Following more than a decade of development and implementation in many countries, the Liverpool Care Pathway is one of the most widely used of these tools.3 It has recently become a focus for wider societal, ethical, and professional debates about identification of patients who are dying and shared decision making at the end of life.

The Liverpool Care Pathway is a structured clinical record that aims to support clinical judgment and assist multidisciplinary teams in providing optimal treatment and care for patients who are dying. It encompasses evidence based control of pain and symptoms, holistic care for patients and families, and good communication. Consistent, high quality care is achieved through timed reviews of the patient’s comfort and documentation of any problems and the actions taken. Medication for the five commonest symptoms found in people in the last hours or days of life is prescribed in advance so that it will be immediately available if required.4

A 2007 Cochrane review found no data from randomised controlled trials about end of life care pathways, but it also found no studies reporting adverse effects from these pathways.5 Large scale baseline and post-implementation audits of the Liverpool Care Pathway care goals are ongoing in the United Kingdom.6 These audits provide good evidence that use of the pathway leads to better anticipatory prescribing of drugs and symptom control for dying patients in different healthcare settings. Recent literature reviews from the UK and Australia supported this evidence and identified benefits for staff in using a comprehensive, multidisciplinary record to document care. Improvements in communication with patients and families and among professionals were evident but more varied.7 8 A randomised controlled trial currently under way in Italy should provide further evidence.9

There is no evidence that the Liverpool Care Pathway itself is flawed, but its effective use depends on clinicians being able to identify people approaching the last hours and days of life. The pathway initially used signs from the trajectory of rapid decline typically associated with dying from cancer—reduced consciousness and poor oral intake and performance status.10 The current version advises that the process of dying is different for different patients, particularly in people with non-cancer illnesses.11 12 Patients who have multimorbidity or organ failure may show a gradual decline in health or experience a series of episodes of acute deterioration, which makes death harder to predict.13 A senior clinician, in consultation with other professionals caring for the patient, must ensure that the deterioration has no potentially reversible and treatable causes before considering the care pathway. Some patients improve after all disease modifying treatments have been withdrawn, and it may be appropriate to discontinue the pathway in such cases.11

Even experienced clinicians can find it difficult to decide when death is imminent. In this situation, the Liverpool Care Pathway can be used within a “deteriorating patient” model. Clear goals are established for any treatments being given, drugs are prescribed for symptom control in case the patient fails to recover and deteriorates further, and the treatment plan is reviewed regularly.14

Decisions about whether a patient will benefit from treatment with antibiotics or clinically assisted nutrition and hydration are made by the clinicians involved on the basis of the assessment of individual risks and benefits, in line with legal, ethical, and professional practice frameworks.11 12 Fluid overload and aspiration increase the risk of distressing respiratory secretions, so careful monitoring is essential if these treatments are continued.15 Patients and professionals may have very different perspectives about hydration, in particular.16

Regular discussions with patients and their families about goals of care and treatment options are an essential part of shared decision making. When a patient lacks capacity, those who know the person well are asked to provide insights about the person’s preferences and any views they may have expressed in advance. Decisions about administering or withdrawing treatment must be made by the clinical team in the patient’s best interest.12

Clinicians must ensure that the patient and family are aware that the patient’s condition is deteriorating. Sensitive explanations about what happens when someone is dying and discussion about the reasons for changes being made to the patient’s treatment plan are important. This will include talking about why the team uses a structured care plan to support excellent comfort care in the last hours and days of life (which is called the Liverpool Care Pathway) and responding to any questions or concerns.

Safe and effective use of end of life care pathways requires considerable investment in implementation and staff training to maintain competencies.7 Quality monitoring needs to go beyond measuring compliance with care goals and should evaluate communication within teams and with patients and families. After a patient’s death, review meetings provide a forum for peer review and scrutiny of decision making by clinicians caring for people approaching the end of life. More public dialogue and awareness about the process of dying, end of life choices, the risks and benefits of various treatments in people who are dying are needed. National campaigns to promote a public discourse about death and dying have a vital role.17 18