This research alert is for those working in healthcare. It summarises the case for interventions to engage clinicians in advance care planning with heart failure patients and sets out the latest findings from our research into what interventions work. See the two minute video about this topic on our YouTube channel and download this page as a PDF for printing.

Advance care planning (ACP) can improve the quality of life of people with heart failure. But only the minority of heart failure patients in the UK have the opportunity to engage with ACP, mainly because clinicians find it difficult.

Jump to sections

• Context

• What we know already

• New messages from our research

• Future interventions

• Priorities for health action

• Key references and resources

Author: Dr Markus Schichtel, GP and post-doctoral researcher, University of Cambridge, Palliative and End of Life Care Group

 

Key points

• Heart failure is the most common cause of hospital admissions in people over 65. As the population ages these figures are predicted to rise. Patients with end-stage heart failure merit optimal palliative care.

• Advance care planning can improve the quality of life of patients with heart failure. But only the minority get the opportunity to receive advance care planning mainly because clinicians find ACP difficult. As a result patient care is affected.

• Interventions targeting clinicians can be effective in improving clinical practice and patient care.

• Complex interventions, using patient-mediated components, shared decision-making tools, reminder systems, and training in communication skills, are needed to support clinicians and patients to improve quality of life and respect patient choice in heart failure.

ACP is a shared conversation between patients, their friends and family and clinicians to clarify personal values and goals of future care in order to ensure that patients receive treatment consistent with their preferences in case they become seriously ill.

 

Context: palliative care in heart failure is suboptimal

Regardless of therapeutic advances, heart failure remains unpredictable, progressive and ultimately fatal (1, 2). The prognosis associated with a diagnosis of heart failure is worse than for many cancers. 38% of patients die within one year of diagnosis; 60% die within five years (3).

Heart failure is the most common cause of hospital admissions in people over 65 and affects around 900,000 people in the UK (4). An ageing population, rising prevalence and new life-prolonging treatment approaches mean that over 5% of patients suffering from heart failure have developed symptoms that are resistant to treatment (5).

Patients with end-stage heart failure merit optimal palliative care. Advance care planning (ACP) is widely advocated to facilitate better care. But only the minority of patients get the opportunity to engage with ACP, mainly because clinicians find it difficult. As a result, patient care is affected and remains suboptimal.

Only 37% of patients with end-stage heart failure were aware of a poor prognosis, merely 8% of patients and 44% of family members were told by clinicians that time was short, and 36% of these patients died alone. (5)

 

What we know already: advance care planning can improve quality of life

Advance care planning (ACP) is a process that helps patients to understand and share their personal values and goals of future care, so that they may receive treatment consistent with their preferences if they become seriously ill. (6)

ACP can improve patients’ quality of life, potentially lower hospital admissions and re-admissions leading to lower healthcare costs, and lower rates of depression in surviving relatives in heart failure. (7)

Heart failure patients in particular often experience periods of sudden and unexpected deterioration in their health status, so that clear guidance on their treatment preferences may be urgently needed. But despite national and international recommendations to engage with ACP, clinicians rarely undertake ACP conversations. (8)

In the UK, less than 8% of all eligible heart failure patients are likely to have an advance care plan.(9)

 

New messages from our research: clinician-targeted interventions can improve practice

The best ways of supporting clinicians to initiate appropriate discussions about end-of-life care are not well understood. (10) Past reviews had not looked at interventions directed at clinicians and had not provided much detail on different approaches used.

Our research aimed to identify which methods carry the best potential to engage clinicians with advance care planning for their heart failure patients, by carrying out a review and meta-analysis of published literature on this topic. (11)

We found that the most effective interventions for engaging clinicians in advance care planning with heart failure patients were:

• Patient-mediated interventions. This is where patients were randomised to prompt their physician to talk about end-of-life care, and this increased the odds of clinician engagement five-fold

• Reminder systems – electronic or paper – more than tripled the odds of clinician engagement

• Educational meetings about advance care planning doubled the odds of clinician engagement

Methods that simultaneously helped clinicians and patients talk about advance care planning were found to have the greatest potential.

Interventions to improve clinicians’ behaviour are more likely to be effective when combined with a variety of techniques rather than using a stand-alone tool.

 

Future interventions

There is a lack of evidence about the optimal conditions under which to implement such a complex intervention. We need an evidence-based rationale for intervention choice and mechanism of action in heart failure with reference to patients and carers as well as clinicians.

As a possible approach, feasibility trials to further investigate this complex behavioural intervention should demonstrate the acceptability of the intervention to clinicians and patients. The intervention components need careful evaluation for timing, frequency, intensity and context, focusing on their capacity to improve clinical outcomes.

 

Priorities for health action: what services can do now

Our findings are endorsed by the National Institute for Health Research (NIHR) (12) who recommend that every service which sees patients with heart failure should:

• Provide patient-mediated tools like a question prompt list for patients with heart failure, with appropriate support and explanation

• Use ‘Choices of Care’ tables or advance care plans for patients with heart failure

• Consider how to remind clinicians to ensure this is routinely done and reviewed

• Facilitate educational meetings for clinicians, to support their engagement of these interventions.

 

Key references and resources

Health resources for the public

• Pumping marvellous: https://pumpingmarvellous.org/
• Healthtalkonline: http://www.healthtalk.org/peoples-experiences/heart-disease/heart-failure/impact-diagnosis-heart-failure
• British Heart Foundation: https://www.bhf.org.uk/
• Heart Failure Matters: https://www.heartfailurematters.org/en_GB
• Advance care planning: https://www.dyingmatters.org/page/planning-your-future-care

Datasets and reports

• National Cardiac Audit Programme. National heart failure audit 2016/17 summary report. London: British Society for Heart Failure; undated.
• NHS Improving Quality. End-of-life care in heart failure: a framework for implementation. London: NHS Improving Quality; 2014.
• Chronic heart failure in adults: diagnosis and management. NG106. London: National Institute for Health and Care Excellence; 2018.
• Chronic heart failure in adults. QS9. London: National Institute for Health and Care Excellence; 2011.
• Management of chronic heart failure. SIGN 147. Edinburgh: Scottish Intercollegiate Guidelines Network, Healthcare Improvement Scotland; 2016.

Research papers

1. LeMond L, Camacho SA, Goodlin SJ. Palliative care and decision making in advanced heart failure. Curr Treat Options Cardiovasc Med. 2015;17(2):359.
2. Taylor CJ, Ryan R, Nichols L, Gale N, Hobbs FDR, Marshall T. Survival following a diagnosis of heart failure in primary care. Family Practice. 2017;34(2):161-8.
3. Barclay S, Momen N, Case-Upton S, Kuhn I, Smith E. End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis. The British Journal of General Practice. 2011;61(582):e49-e62.
4. Taylor CJ, Moore J, O’Flynn N. Diagnosis and management of chronic heart failure: NICE guideline update 2018. Br J Gen Pract. 2019;69(682):265-6.
5. Adler ED, Goldfinger JZ, Kalman J, Park ME, Meier DE. Palliative care in the treatment of advanced heart failure. Circulation. 2009;120(25):2597-606.
6. Murray SA, Sheikh A, Thomas K. Advance care planning in primary care. BMJ. 2006;333(7574):868-9.
7. Sobanski PZ, Alt-Epping B, Currow DC, Goodlin SJ, Grodzicki T, Hogg K, et al. Palliative Care for people living with heart failure – European Association for Palliative Care Task Force expert position statement. Cardiovasc Res. 2019.
8. Connolly M, Beattie J, Walker D, M. D. End-of-life care in heart failure: A framework for implementation; National End-of-life Care Programme. 2010.
9. Aw D, Hayhoe B, Smajdor A, Bowker LK, Conroy SP, Myint PK. Advance care planning and the older patient. QJM: An International Journal of Medicine. 2012;105(3):225-30.
10. Schichtel M, Wee B, MacArtney JI, Collins S. Clinician barriers and facilitators to heart failure advance care plans: a systematic literature review and qualitative evidence synthesis. BMJ Supportive & Palliative Care. 2019:bmjspcare-2018-001747.
11. Schichtel M, Wee B, Perera R, Onakpoya I, Albury C, Barber S. Clinician-targeted interventions to improve advance care planning in heart failure: a systematic review and meta-analysis. Heart. 2019:heartjnl-2019-314758.
12. National Institute for Health Research. Routine engagement in end of life planning can improve health outcomes for people with heart failure. NIHR Signal. July 2019; doi: 10.3310/signal-000801.

Published by the Primary Care Unit, University of Cambridge, with NHS Cambridgeshire and Peterborough Clinical Commissioning Group.
Contact: Viv Shaw at the CCG or Lucy Lloyd at the Primary Care Unit