Key messages
We did not find enough good quality evidence to be able to say which ways of communicating about end of life (EoL) are best for the people involved. One study of a family conference intervention found that communication interventions might increase the length of EoL discussions between families and health professionals in some situations, and one other found that an intervention which used a structured conversation guide might lead to earlier discussions between patients, carers, and health professionals about EoL and EoL care. We did not find any evidence of harmful or negative effects of communication interventions, and we are uncertain about effects on outcomes like knowledge or quality of EoL care.
Why is communication at the end of life important?
When people are in the last year of their life, it is important that they receive high-quality care (refer to ACSQHC 2015 and 2015b references for more on care at end of life). Communication about EoL is a critical part of such care. It helps patients and their families and carers to understand what is happening, to know what to expect and what their options are, to ask questions and receive support, and to be involved in decisions and planning as much as they would like to be. Communication about EoL is not always done well and this can have negative effects. Understanding how to improve such communication between the different people involved in care at EoL (patients, family members, carers, health professionals) is important to help ensure that people receive the best possible care in the time leading up to death.
What did we want to find out?
We wanted to find out which ways of communicating with patients and carers might be best for improving people’s knowledge about the EoL (e.g. what to expect, treatment options).
What people thought about the communication (e.g. satisfaction, communication quality, how involved they were and wanted to be in consultations). Discussions about end of life (e.g. how often these happened, and when).
We also wanted to find out if communication interventions might increase unwanted or harmful effects, like fear or distress.
What did we do?
We searched for studies that looked at communication interventions compared with usual care (care that is provided routinely or as the standard way of treating people), or comparing one type of communication (e.g. providing information) with another (e.g. providing information together with support), in people of all ages from birth onwards and who were expected to die within 12 months. We summarised the results of the included studies and rated our confidence in the evidence based on factors such as study size, study methods, and the people studied by the trials.
To ensure this review's focus was maintained on interpersonal communication in the last 12 months of life, we excluded studies that addressed specific decisions, shared or otherwise, and the tools involved in such decision-making. We also excluded studies focused on advance care planning (ACP) reporting ACP uptake or completion as the primary outcome. Finally, we excluded studies of communication skills training for health professionals unless patient outcomes were reported as primary outcomes.
What did we find?
We found eight studies that compared the effects of communication interventions for people at EoL with usual care. Interventions were varied and ranged from simple approaches like a list to help patients and carers ask questions in consultations, through to complex structured conversation interventions to engage patients and carers in discussions about EoL and the care they wished to receive.
We found that a family conference intervention may increase the length of EoL discussions in some situations, and a structured serious illness conversation guide might lead to earlier discussions between patients, carers and health professionals about EoL and EoL care.
We also found there may be little effect of communication interventions on knowledge, on what people thought about the communication (e.g. quality of communication, how involved in the discussion they would like to be) or on outcomes like numbers of questions asked by patients in consultations with their doctors. We did not find any evidence of harmful or negative effects of the interventions, but the studies were mostly small and not designed primarily to identify these.
There may also be little effect on the other outcomes we looked for, like quality of life, quality of EoL care, or numbers of care goals met. In other cases, we are unsure because there was little or no evidence available (e.g. health professional outcomes like knowledge or confidence to communicate, or health service use e.g. hospital admissions).
What are the limitations of the evidence?
We have very little confidence in the evidence: included studies only looked at communication for older adults in high-income countries, whereas the review looked for evidence across the whole lifespan and irrespective of country and setting. Additionally, included studies often studied small numbers of people.
How up to date is this evidence?
The evidence is up to date to July 2018.
Findings of this review are inconclusive for practice. Future research might contribute meaningfully by seeking to fill gaps for populations not yet studied in trials; and to develop responsive outcome measures with which to better assess the effects of communication on the range of people involved in EoL communication episodes. Mixed methods and/or qualitative research may contribute usefully to better understand the complex interplay between different parties involved in communication, and to inform development of more effective interventions and appropriate outcome measures. Co-design of such interventions and outcomes, involving the full range of people affected by EoL communication and care, should be a key underpinning principle for future research in this area.
Communication about end of life (EoL) and EoL care is critically important for providing quality care as people approach death. Such communication is often complex and involves many people (patients, family members, carers, health professionals). How best to communicate with people in the period approaching death is not known, but is an important question for quality of care at EoL worldwide. This review fills a gap in the evidence on interpersonal communication (between people and health professionals) in the last year of life, focusing on interventions to improve interpersonal communication and patient, family member and carer outcomes.
To assess the effects of interventions designed to improve verbal interpersonal communication about EoL care between health practitioners and people affected by EoL.
We searched CENTRAL, MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018, without language or date restrictions. We contacted authors of included studies and experts and searched reference lists to identify relevant papers. We searched grey literature sources, conference proceedings, and clinical trials registries in September 2019. Database searches were re-run in June 2021 and potentially relevant studies listed as awaiting classification or ongoing.
This review assessed the effects of interventions, evaluated in randomised and quasi-randomised trials, intended to enhance interpersonal communication about EoL care between patients expected to die within 12 months, their family members and carers, and health practitioners involved in their care. Patients of any age from birth, in any setting or care context (e.g. acute catastrophic injury, chronic illness), and all health professionals involved in their care were eligible. All communication interventions were eligible, as long as they included interpersonal interaction(s) between patients and family members or carers and health professionals. Interventions could be simple or complex, with one or more communication aims (e.g. to inform, skill, engage, support). Effects were sought on outcomes for patients, family and carers, health professionals and health systems, including adverse (unintended) effects.
To ensure this review's focus was maintained on interpersonal communication in the last 12 months of life, we excluded studies that addressed specific decisions, shared or otherwise, and the tools involved in such decision-making. We also excluded studies focused on advance care planning (ACP) reporting ACP uptake or completion as the primary outcome. Finally, we excluded studies of communication skills training for health professionals unless patient outcomes were reported as primary outcomes.
Standard Cochrane methods were used, including dual review author study selection, data extraction and quality assessment of the included studies.
Eight trials were included. All assessed intervention effects compared with usual care. Certainty of the evidence was low or very low. All outcomes were downgraded for indirectness based on the review’s purpose, and many were downgraded for imprecision and/or inconsistency. Certainty was not commonly downgraded for methodological limitations.
A summary of the review's findings is as follows.
Knowledge and understanding (four studies, low-certainty evidence; one study without usable data): interventions to improve communication (e.g. question prompt list, with or without patient and physician training) may have little or no effect on knowledge of illness and prognosis, or information needs and preferences, although studies were small and measures used varied across trials.
Evaluation of the communication (six studies measuring several constructs (communication quality, patient-centredness, involvement preferences, doctor-patient relationship, satisfaction with consultation), most low-certainty evidence): across constructs there may be minimal or no effects of interventions to improve EoL communication, and there is uncertainty about effects of interventions such as a patient-specific feedback sheet on quality of communication.
Discussions of EoL or EoL care (six studies measuring selected outcomes, low- or very low-certainty evidence): a family conference intervention may increase duration of EoL discussions in an intensive care unit (ICU) setting, while use of a structured serious illness conversation guide may lead to earlier discussions of EoL and EoL care (each assessed by one study). We are uncertain about effects on occurrence of discussions and question asking in consultations, and there may be little or no effect on content of communication in consultations.
Adverse outcomes or unintended effects (limited evidence): there is insufficient evidence to determine whether there are adverse outcomes associated with communication interventions (e.g. question prompt list, family conference, structured discussions) for EoL and EoL care. Patient and/or carer anxiety was reported by three studies, but judged as confounded. No other unintended consequences, or worsening of desired outcomes, were reported.
Patient/carer quality of life (four studies, low-certainty evidence; two without useable data): interventions to improve communication may have little or no effect on quality of life.
Health practitioner outcomes (three studies, low-certainty evidence; two without usable data): interventions to improve communication may have little or no effect on health practitioner outcomes (satisfaction with communication during consultation; one study); effects on other outcomes (knowledge, preparedness to communicate) are unknown.
Health systems impacts: communication interventions (e.g. structured EoL conversations) may have little or no effect on carer or clinician ratings of quality of EoL care (satisfaction with care, symptom management, comfort assessment, quality of care) (three studies, low-certainty evidence), or on patients' self-rated care and illness, or numbers of care goals met (one study, low-certainty evidence). Communication interventions (e.g. question prompt list alone or with nurse-led communication skills training) may slightly increase mean consultation length (two studies), but other health service impacts (e.g. hospital admissions) are unclear.