Systematic scoping review and meta analysis of end-of-life decision making tools and strategies

This project was a systematic review of the evidence about the effectiveness of tools and strategies for advanced care planning (ACP) and end-of-life (EOL) decision-making.

About the Project

With the advances in medical care over past decades, EOL decision-making has become an integral part of quality health care, as a way to ensure that treatment at the EOL is aligned with patients’ values and preferences. Given that patients at the end of life may not be able to state their treatment preferences due to either acute or chronic illness, and because many substitute-decision makers (SDMs) are unable to accurately predict patients’ wishes at the end of life, ACP has been used to elicit and record EOL preferences. However, it is still uncertain what tools, strategies or interventions to facilitate EOL decisions are most effective and acceptable to patients and their SDMs.

We conducted a systematic review of the efficacy of these tools by assessing the impact of published ACP or EOL decision-making tools or strategies on outcomes such as creation of advance care plans and documentation of goals of care or resuscitation status.

Project Team

Principal Investigator:

John You, MD, MSc, FRCPC — McMaster University

Knowledge Users and Partners:

Louise Hanvey — Canadian Hospice Palliative Care Association (CHPCA)

Project Contact: John You — John.You@thp.ca

KS 2014-06

Key words: advance care planning; advance directive; end-of-life; communication tool; palliative care

Key Findings for Families

Key Findings for Families

Tools can improve EOL communication and quality of care. However, because of important flaws in the existing research, we have low confidence in how well these tools work.

The findings of this study could improve the care people get at the EOL.

  • By showing that communication tools may improve care, this study may encourage medical staff to use communication tools during EOL care
  • This can help patients get the care they want

Why This Matters

Many tools to improve EOL communication exist, and even more are being created, but it is not known if they actually help patients, families and medical staff.

About This Study

  • This study used systematic review methods. A systematic review is a way to find all research on the use of communication tools for EOL care
  • Studies were included in this review if they studied adult patients at the EOL, and if the study compared communication tools with usual care
  • The results of all of the studies were combined to determine how well communication tools work in improving EOL care
Key Findings for Policy

Key Findings for Policy

The results of this study can inform policy around the use of communication tools for EOL care.

  • Tools can improve EOL communication and consequently can improve alignment between EOL care desired by patients and care received
  • This may lead to a reduction in unnecessary or unwanted use of medical interventions
  • However, the quality of the evidence for the efficacy of EOL communication tools is low and any implementation efforts need to be tailored to the local setting and monitored/evaluated to ensure the expected/anticipated benefits are being realized

Why This Study was Needed

Many communication tools exist, and even more are being created, to help patients, families and healthcare providers discuss and make decisions about EOL care. However, their effectiveness; the degree to which they help patients receive the care they want at the EOL, is unknown.

Study Summary

  • This study used systematic review methods to find and synthesize all medical research on the use of communication tools for EOL care that exists
  • Studies included in this review were studies of adult patients at the EOL that compare the use of communication tools with usual care
  • A systematic search of the medical literature identified 5,785 references and 120 articles were included in the review. Of those included, 67 were in an outpatient setting, 19 were in the intensive care unit, 18 were in a hospital setting and 19 were educational interventions
Key Findings for Researchers

Key Findings for Researchers

The results of this study should promote tailored and monitored implementation of EOL communication tools, which has the potential to better align care with patients’ values and preferences during this crucial time.

  • This study found evidence to suggest the implementation of EOL communication tools has the potential to improve the quality of care
  • This study also identified a gap in the evidence for the effectiveness of EOL communication tools – current evidence is low quality, lowering our confidence in the effectiveness of these tools (on patient-important outcomes, such as the concordance between care desired by patients and care received)

Why This Study was Needed

Many communication tools exist, and even more are being created, to help patients, families and healthcare providers discuss and make decisions about EOL care. However, their effectiveness; their ability to help patients receive the care they want at the EOL, is unknown.

How This Study Addresses the Gap

A systematic review was undertaken to examine the efficacy of structured communication tools for EOL decision-making compared to usual care on the completion of advanced care planning, concordance between advanced directives and medical orders for care, concordance between care desired by patients and care actually received at EOL, and other outcomes. Five medical databases were searched (MEDLINE, Embase, CINAHL, Cochrane Database of Clinical Controlled Trials and ERIC) using search terms related to communication, decision-making, end-of-life and cardiopulmonary resuscitation. 5,785 references were identified and 120 articles were included in the review. Of those included 67 were in an outpatient setting, 19 were in the intensive care unit, 18 were in a hospital setting and 19 were educational interventions. Overall, the quality of evidence was low.

Future Research

  • Greater focus on improving implementation, i.e., by tailoring efforts to the local setting and monitoring/evaluation implementation efforts, may show further improvements in the quality of care during this crucial time
  • The current evidence is heterogeneous and of poor quality – a need for higher quality studies in this area is needed

Publications

Publications

Oczkowski, S.J., Chung, H., Hanvey, L., Mbuagbaw, L., You, J.J. Communication tools for end-of-life decision-making in the intensive care unit: systematic review and meta-analysis. Critical Care 2016;20:97.

Chung, H., Oczkowski, S.J., Hanvey, L., Mbuagbaw, L., You, J.J. Educational interventions to train healthcare professionals in end-of-life communication: a systematic review and meta-analysis. BMC Med Ed 2016;16:131.

Oczkowski, S.J., Chung, H., Hanvey, L., Mbuagbaw, L., You, J.J. Communication tools for end-of-life decision-making in ambulatory care settings: a systematic review and meta-analysis. PLoS ONE 11(4): e0150671. doi:10.1371/journal.pone.0150671.