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NIHR Signal Advance care plans improve quality of life for heart failure patients

Published on 12 February 2020

doi: 10.3310/signal-000878

Advance care planning (ACP) can improve the quality of life of patients with heart failure, especially if it includes follow-up, involves family members and is carried out by trained clinicians working in multidisciplinary teams.

This review summarised the evidence about the effect of ACP on quality of life, compared with usual care, for 2,924 patients in 14 trials. All the participants were adults diagnosed with heart failure, in community, hospital or hospice care.

The study suggests that ACP needs to be carefully timed and take into account patients’ cultural preferences if it is to have a positive effect. Isolated interventions to complete care planning documents may not be enough to improve the quality of life.

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Why was this study needed?

Around 200,000 people are newly diagnosed with heart failure each year in the UK. The condition is progressive and eventually fatal, so end of life care is an important issue to address. Advance care planning is often recommended to help patients and their families think about the care they wish to receive at the end of life, before they are unable to express an opinion.

Questions might include their resuscitation preferences, where they would like to be cared for, and discussion about switching off implanted defibrillating pacemakers.

Most research has focused on how well interventions work to ensure people take part in ACP. There is less research about how ACP actually affects people with heart failure. This review aimed to measure the effect of ACP on the quality of life of people with heart failure.

What did this study do?

This systematic review and meta-analysis analysed 14 randomised controlled trials with 2,924 participants. Researchers looked at the effect of ACP on quality of life, patient satisfaction with care and quality of end-of-life communication. One study was UK based but most were from the US.

They defined ACP as interventions which provided a "co-ordinated and comprehensive approach" to future care and excluded interventions which only looked at decisions around resuscitation. They tried to identify what characterised interventions with larger or smaller effect sizes.

They carried out GRADE assessments of bias, which found the overall quality of evidence to be low or moderate, largely because of the difficulty in blinding patients to the intervention. This could have biased the findings in favour of the intervention.

What did it find?

  • ACP moderately improved the quality of life of patients (standardised mean difference [SMD] 0.38, 95% confidence interval [CI] 0.09 to 0.66; 7 studies, 724 participants).
  • ACP moderately improved patient satisfaction (SMD 0.39, 95% CI 0.14 to 0.64; 4 studies, 1,290 participants).
  • Quality of end of life communication was moderately improved by ACP (SMD 0.29, 95% CI 0.17 to 0.42; 4 studies, 995 patients).
  • The ACP interventions which had bigger effect sizes tended to be timed at a significant point in the patient’s journey (such as before hospital discharge), used trained clinicians working in multidisciplinary teams, involved education of patients about their options, included the patient’s family, and had planned follow-up.

What does current guidance say on this issue?

A NICE guideline from 2018 on management of heart failure mentions ACP only in the context of discussion around switching off implanted defibrillating pacemakers. The guideline says benefits and harms of the defibrillator remaining active should be discussed as part of ACP if it is thought the patient is nearing the end of life.

The guideline also says consideration should be given to people working in heart failure to have advanced communication skills training.

What are the implications?

The findings of the study suggest that ACP should be introduced into the care of people with heart failure:

  • at a significant milestone in their illness
  • with follow-up appointments over a period of time
  • with mindfulness about ACP preferences
  • with an offer to involve family members
  • within the context of a multidisciplinary team.

Advance care planning given as an isolated intervention, without due consideration of these issues, may not be effective. Introducing ACP effectively is likely to involve staff training and planning at a multidisciplinary level.

Citation and Funding

Schichtel M, Wee B, Perera R and Onakpoya I. The effect of advance care planning on heart failure: a systematic review and meta-analysis. J Gen Intern Med. 2019; November 12. doi: 10.1007/s11606-019-05482-w. [Epub ahead of print].

No funding information was provided for this study.

Bibliography

NICE. Chronic heart failure in adults: diagnosis and management. NG106. London: National Institute for Health and Care Excellence; 2018.

Why was this study needed?

Around 200,000 people are newly diagnosed with heart failure each year in the UK. The condition is progressive and eventually fatal, so end of life care is an important issue to address. Advance care planning is often recommended to help patients and their families think about the care they wish to receive at the end of life, before they are unable to express an opinion.

Questions might include their resuscitation preferences, where they would like to be cared for, and discussion about switching off implanted defibrillating pacemakers.

Most research has focused on how well interventions work to ensure people take part in ACP. There is less research about how ACP actually affects people with heart failure. This review aimed to measure the effect of ACP on the quality of life of people with heart failure.

What did this study do?

This systematic review and meta-analysis analysed 14 randomised controlled trials with 2,924 participants. Researchers looked at the effect of ACP on quality of life, patient satisfaction with care and quality of end-of-life communication. One study was UK based but most were from the US.

They defined ACP as interventions which provided a "co-ordinated and comprehensive approach" to future care and excluded interventions which only looked at decisions around resuscitation. They tried to identify what characterised interventions with larger or smaller effect sizes.

They carried out GRADE assessments of bias, which found the overall quality of evidence to be low or moderate, largely because of the difficulty in blinding patients to the intervention. This could have biased the findings in favour of the intervention.

What did it find?

  • ACP moderately improved the quality of life of patients (standardised mean difference [SMD] 0.38, 95% confidence interval [CI] 0.09 to 0.66; 7 studies, 724 participants).
  • ACP moderately improved patient satisfaction (SMD 0.39, 95% CI 0.14 to 0.64; 4 studies, 1,290 participants).
  • Quality of end of life communication was moderately improved by ACP (SMD 0.29, 95% CI 0.17 to 0.42; 4 studies, 995 patients).
  • The ACP interventions which had bigger effect sizes tended to be timed at a significant point in the patient’s journey (such as before hospital discharge), used trained clinicians working in multidisciplinary teams, involved education of patients about their options, included the patient’s family, and had planned follow-up.

What does current guidance say on this issue?

A NICE guideline from 2018 on management of heart failure mentions ACP only in the context of discussion around switching off implanted defibrillating pacemakers. The guideline says benefits and harms of the defibrillator remaining active should be discussed as part of ACP if it is thought the patient is nearing the end of life.

The guideline also says consideration should be given to people working in heart failure to have advanced communication skills training.

What are the implications?

The findings of the study suggest that ACP should be introduced into the care of people with heart failure:

  • at a significant milestone in their illness
  • with follow-up appointments over a period of time
  • with mindfulness about ACP preferences
  • with an offer to involve family members
  • within the context of a multidisciplinary team.

Advance care planning given as an isolated intervention, without due consideration of these issues, may not be effective. Introducing ACP effectively is likely to involve staff training and planning at a multidisciplinary level.

Citation and Funding

Schichtel M, Wee B, Perera R and Onakpoya I. The effect of advance care planning on heart failure: a systematic review and meta-analysis. J Gen Intern Med. 2019; November 12. doi: 10.1007/s11606-019-05482-w. [Epub ahead of print].

No funding information was provided for this study.

Bibliography

NICE. Chronic heart failure in adults: diagnosis and management. NG106. London: National Institute for Health and Care Excellence; 2018.

The Effect of Advance Care Planning on Heart Failure: a Systematic Review and Meta-analysis

Published on 14 November 2019

Schichtel, M.,Wee, B.,Perera, R.,Onakpoya, I.

J Gen Intern Med , 2019

BACKGROUND: Advance care planning is widely advocated to improve outcomes in end-of-life care for patients suffering from heart failure. But until now, there has been no systematic evaluation of the impact of advance care planning (ACP) on clinical outcomes. Our aim was to determine the effect of ACP in heart failure through a meta-analysis of randomized controlled trials (RCTs). METHODS: We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index and PsycINFO (inception to July 2018). We selected RCTs including adult patients with heart failure treated in a hospital, hospice or community setting. Three reviewers independently screened studies, extracted data, assessed the risk of bias (Cochrane risk of bias tool) and evaluated the quality of evidence (GRADE tool) and analysed interventions according to the Template for Intervention Description and Replication (TIDieR). We calculated standardized mean differences (SMD) in random effects models for pooled effects using the generic inverse variance method. RESULTS: Fourteen RCTs including 2924 participants met all of the inclusion criteria. There was a moderate effect in favour of ACP for quality of life (SMD, 0.38; 95% CI [0.09 to 0.68]), patients' satisfaction with end-of-life care (SMD, 0.39; 95% CI [0.14 to 0.64]) and the quality of end-of-life communication (SMD, 0.29; 95% CI [0.17 to 0.42]) for patients suffering from heart failure. ACP seemed most effective if it was introduced at significant milestones in a patient's disease trajectory, included family members, involved follow-up appointments and considered ethnic preferences. Several sensitivity analyses confirmed the statistically significant direction of effect. Heterogeneity was mainly due to different study settings, length of follow-up periods and compositions of ACP. CONCLUSIONS: ACP improved quality of life, patient satisfaction with end-of-life care and the quality of end-of-life communication for patients suffering from heart failure and could be most effective when the right timing, follow-up and involvement of important others was considered.

Expert commentary

Advance care planning represents a widely advocated process to realise patients’ preferences and wishes about future treatment and care and may be relevant to people with heart failure. 

This systematic review identified only moderate ACP benefits with quality of life, satisfaction with end-of-life care, and end-of-life communication.

As with other studies, researchers and clinicians need to be mindful of the intended benefits of ACP that must be matched with appropriate outcome measures. Moreover, understanding the context and mechanisms of action of this complex intervention is required.

Dr Jonathan Koffman, Reader in Palliative Care, Cicely Saunders Institute, King’s College London   

The commentator declares no conflicting interests

Expert commentary

What we know about ACP and its effect on clinical outcomes is primarily drawn from the cancer literature. We know little about ACP outcomes in non-cancer conditions such as heart failure, leading to gaps in knowledge and perpetuation of the diagnosis-related inequity that pervades palliative care.

This meta-analysis revealed that ACP in heart failure is associated with significant increases in quality of life, patient satisfaction and end of life communication. This is a welcome finding, and the wide range of different ACP intervention types that were included implies that ACP in any form is better than no ACP.

The study suggests that including family members, considering ethnic and cultural preferences, broader determinants of health and wellbeing and offering follow-up can increase the potential effectiveness of ACP.

Dr Clare Gardiner, Senior Research Fellow, Health Sciences School, Division of Nursing and Midwifery, University of Sheffield

The commentator declares no conflicting interests

Expert commentary

Advance care planning is widely advocated; it underpins national initiatives like the UK Resuscitation Council’s ReSPECT work. However, ACP research is challenging. It is hard to clearly describe and faithfully replicate the ACP intervention – not just in terms of the components, but also in terms of their quality. How well ACP is conducted is as important as what is done. In addition, the research outcomes studied have often been process measures, captured over relatively short time periods.

In this systematic review of ACP for heart failure patients, the authors found evidence on important clinical outcomes over the subsequent two to three months; quality-of-life, patient satisfaction, and quality of end-of-life communication.

This work helps clinicians understand and quantify the positive impact of ACP. However, achieving high-quality ACP remains the biggest challenge in practice.

Fliss Murtagh, Professor of Palliative Care, Hull York Medical School, University of Hull

The commentator declares no conflicting interests