End‐of‐life care pathways for improving outcomes in caring for the dying Stable (no update expected for reasons given in 'What's new')

Abstract

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 methods 

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.

Authors' conclusions 

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

Author(s)

Raymond J Chan, Joan Webster, Alison Bowers

Abstract

Plain language summary 

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.

Author(s)

Raymond J Chan, Joan Webster, Alison Bowers

Reviewer's Conclusions

Authors' conclusions 

Implications for practice 

For people receiving end‐of‐life care and families 

Although end‐of‐life care pathways are generally developed with best practice principles, the only randomised controlled trial (RCT) available did not demonstrate important benefits for patients and their families/caregivers.

For clinicians 

Although strong evidence supporting end‐of‐life care pathways is lacking, the principles underpinning such pathways remain relevant. Plans for end‐of‐life care should be developed in open consultation with the patient and significant others.

For policy makers and funders 

Without strong evidence supporting the effectiveness of the end‐of‐life care pathways, it is difficult to justify the implementation of an end‐of‐life care pathway given the resource intensive nature of the intervention. It would be prudent to invest resources into other evidence‐based strategies for improving the standards of end‐of‐life care. All health services using an end‐of‐life care pathway are encouraged to have their use of the pathway, to date, independently audited, with particular emphasis on the Neuberger's findings (Neuberger 2013). Any subsequent use should be based on carefully documented prospective evaluations.

Implications for research 

General 

Although high level evidence remains scarce, existing research may be used to inform the development of any future trials. The only available RCT failed to show any significant benefits.

Design 

There remains an urgent need for large RCTs or other well‐designed controlled studies for the evaluation of the use of end‐of‐life care pathways in caring for dying people in various settings. Such evaluations might be difficult in countries where end‐of‐life care pathways are embedded in practice or are being withdrawn. However, it remains important to test the effectiveness of end‐of‐life care pathways where possible. To ensure generalisability, such trials should stratify participants according to different care settings including general acute care setting, emergency department, cancer care units, residential aged care facilities and specialist palliative care units. Additionally, if such studies demonstrate positive effects, it is imperative that there is careful ongoing evaluation of the implementation of any revised pathway as it is made available more broadly.

Measurement (endpoints) 

In future studies, outcome measures should include the outcomes of interest in this review in relation to patients, families, carers and health professionals. These may include patients' symptom control, harms, communication between healthcare team and families, carers' well‐being, grief and bereavement, staff and carers' satisfaction, staff confidence, cost of intervention, cost of care and medication use.

Other 

Further, investigations of the effects of such pathways for specific populations are warranted. These specific populations may include, but are not limited to, children and patients with end‐stage organ failure or dementia.

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