End-of-life care pathways for the dying

Background

End-of-life care pathways are used for people who are in the last days of their life, to guide effective care and aid decision making. Due to substantial concerns regarding safety and quality of care associated with the pathway implementation, the most used end-of-life care pathway (Liverpool Care Pathway) is no longer used in the United Kingdom (UK). This review examined whether using end-of-life care pathways in caring for the dying was effective.

Study characteristics

In July 2015, we searched scientific databases for clinical trials in which the effect of the end-of-life care pathway was compared with a control group that received usual care, or with trials comparing one end-of-life care pathway with another end-of-life care pathway. Participants were patients, carers and families who received care guided by an end-of-life care pathway. There were no restrictions on age of the patient, diagnosis or setting (hospital, home, nursing home).

Key results

In the current review we found one Italian study, in which information about 232 patients who were dying was provided by their informal carers (friends or family). Only 34% of the participants were cared for in accordance with the pathway. Breathlessness was better controlled for patients on the Liverpool Care Pathway compared to patients not on the pathway, but this is based on evidence from one small trial. The study did not report on important outcomes such as the severity of other physical or psychological symptoms or quality of life, or if there were any side effects associated with using the end-of-life care pathway. Nor were there questions about satisfaction with care, costs of the intervention, or quality of communication between carers and healthcare providers.

Quality of evidence

We judged the included study to be of very low quality due to potential biases, including: not being able to prevent participants from knowing which group they were in (usual care or the care pathway group); the large number of carers who were initially enrolled, but who did not respond to follow-up questionnaires (this was particularly true for carers of patients in the wards where the care pathway was not used (control wards)); the low proportion of patients who actually received the care pathway (intervention) as planned; and that the study only included cancer patients in Italian hospitals; therefore, results might not apply to patients with other diseases.

Authors' conclusions: 

There is limited available evidence concerning the clinical, physical, psychological or emotional effectiveness of end-of-life care pathways.

Read the full abstract...
Background: 

This is an updated version of a Cochrane review published in Issue 11, 2013 in the Cochrane Library. In many clinical areas, integrated care pathways are utilised as structured multidisciplinary care plans that detail essential steps in caring for patients with specific clinical problems. In particular, care pathways for the dying have been developed as a model to improve care of patients who are in the last days of life. The care pathways were designed with an aim of ensuring that the most appropriate management occurs at the most appropriate time, and that it is provided by the most appropriate health professional. Since the last update, there have been sustained concerns about the safety of implementing end-of-life care pathways, particularly in the United Kingdom (UK). Therefore, there is a significant need for clinicians and policy makers to be informed about the effects of end-of-life care pathways via a systematic review.

Objectives: 

To assess the effects of end-of-life care pathways, compared with usual care (no pathway) or with care guided by another end-of-life care pathway across all healthcare settings (e.g. hospitals, residential aged care facilities, community).

In particular, we aimed to assess the effects on symptom severity and quality of life of people who are dying, or those related to the care, such as families, carers and health professionals, or a combination of these.

Search strategy: 

We searched the Cochrane Central Register of Controlled Trials (CENTRAL; Cochrane Library; 2015, Issue 6), MEDLINE, EMBASE, PsycINFO, CINAHL, review articles, trial registries and reference lists of relevant articles. We conducted the original search in September 2009, and the second updated search in July 2015.

Selection criteria: 

All randomised controlled trials (RCTs), quasi-randomised trials or high quality controlled before-and-after studies comparing use versus non-use of an end-of-life care pathway in caring for the dying.

Data collection and analysis: 

Two review authors independently assessed the results of the searches against the predetermined criteria for inclusion, assessed risk of bias, and extracted data. We used standard methodological procedures expected by Cochrane.

Main results: 

We screened 3028 titles, and included one Italian cluster RCT with 16 general medicine wards (inpatient units in hospitals) and 232 carers of cancer patients in this updated review. We judged the study to be at a high risk of bias overall, mainly due to a lack of blinding and rates of attrition. Only 34% of the participants (range 14% to 75% on individual wards) were cared for in accordance with the care pathway as planned. However, these issues were to be expected due to the nature of the intervention and condition. The study population was all cancer patients in their last days of life. Participants were allocated to care using the Liverpool Care Pathway (LCP-I, Italian version of a continuous quality improvement programme of end-of-life care) or to standard care. The primary outcomes of this review were physical symptom severity, psychological symptom severity, quality of life, and any adverse effects. Physical symptom severity was assessed as overall control of pain, breathlessness, and nausea and vomiting. There was very low quality evidence of a difference in overall control of breathlessness that favoured the Liverpool Care Pathway group compared to usual care: the study reported an odds ratio (OR) of 2.0 with 95% confidence intervals (CIs) 1.1 to 3.8. Very low quality evidence of no difference was found for pain (OR 1.3, 95% CI 0.7 to 2.6, P = 0.461) and nausea and vomiting (OR 1.5, 95% CI 0.7 to 3.2, P = 0.252). None of the other primary outcomes were assessed by the study. Limited data on advance care planning were collected by the study authors, making results for this secondary outcome unreliable. None of our other secondary outcomes were assessed by the study.