Jump to comment:

• EPaCCS and the need for research
  Matthew J Allsop
  Published on: 20 November 2018
• Warning - EPaCCS may NOT facilitate home deaths
  Lesley Wye
  Published on: 20 November 2018
• Evidence based policy in palliative care - time to learn from our mistakes
  Katherine E. Sleeman
  Published on: 20 November 2018

• Published on: 20 November 2018

  EPaCCS and the need for research

  • Matthew J Allsop, Research Fellow in Applied Health
  • Other Contributors:
    • Michael I Bennett

  We agree with Sleeman and Higginson [1] who emphasised the need to gather evidence of effectiveness of EPaCCS before widespread and uncritical adoption by the NHS. An EPaCCS evaluation framework was recently developed by our team on behalf of end of life commissioners in Leeds [2]. There was, and remains, a scarcity of guidance on approaches to gathering evidence for EPaCCS but we identified factors that highlight the c...

  Show More

  We agree with Sleeman and Higginson [1] who emphasised the need to gather evidence of effectiveness of EPaCCS before widespread and uncritical adoption by the NHS. An EPaCCS evaluation framework was recently developed by our team on behalf of end of life commissioners in Leeds [2]. There was, and remains, a scarcity of guidance on approaches to gathering evidence for EPaCCS but we identified factors that highlight the complexity of EPaCCS evaluation:

  1) Most EPaCCS will differ

  The principle of EPaCCS, as pointed out by Petrova et al [3] is a robust one; its aim is to support sharing of up-to-date key information about patients believed to be in the last year of their life. This feels like an intuitive approach that could improve care for patients at end of life. However, as Petrova et al [3] report, fewer than half of England's clinical commissioning groups have a functioning EPaCCS. Implementation of EPaCCS systems have led to disparate local approaches to adapting and embedding EPaCCS templates in electronic medical record systems, across wide-ranging and diverse multidisciplinary teams. Before conducting our evaluation in Leeds, we undertook fifteen interviews with health professionals delivering community care. While intended to inform how EPaCCS is used in Leeds, it highlighted the diverse approaches to EPaCCS use; a district nurse opened an EPaCCS for any new patient entering a care home, a GP created an EPaCCS in response to any referral from a palliative care team, and a GP opted out of using EPaCCS for an alternative template that collates similar items. Such diversity in the use of EPaCCS was occurring locally in one city, despite an intensive citywide training programme. Furthermore, general practices in Leeds use one of two separate electronic medical record systems, with slightly different EPaCCS templates. The EPaCCS templates have also been iteratively developed, with subsequent changes to the form used in practice. This level of complexity highlights the need to consider carefully how individual EPaCCS might be evaluated, in particular how regional or national comparisons and evaluations are framed.

  2) EPaCCS is not static

  Our evaluation sought to identify the number of days before death that items were added to a patient's EPaCCS record. Documented preferences for DNACPR wishes were recorded a median of 34 days before death, with EPaCCS records being created a median of 31 days before death. A range of initiatives for improving documentation of DNACPR wishes had taken place in Leeds before and during EPaCCS implementation. The crossover in clinical codes in an EPaCCS template with other items on a patient's medical record, and the occurrence of parallel service improvement initiatives limited the extent to which our evaluation could attribute improvements to EPaCCS.

  3) Qualitative work is crucial

  Our brief engagement with health professionals prior to the evaluation highlighted that qualitative work will be essential to understanding how EPaCCS is currently being used. A recent qualitative study by Wye et al [4] found that most users of EPaCCS were community health professionals, which may account for attributions to EPaCCS of increases in patient home deaths. Qualitative approaches can offer crucial insights into what is happening on the ground, away from broad claims of EPaCCS benefits. Engaging with health professionals may also help to identify why so few eligible patients are being registered on EPaCCS. Wye et al [4] reported low numbers of patients registered on EPaCCS (9% and 13% in two separate regions), aligned with reports of systems such as Coordinate My Care achieving 16.6%[3]. In Leeds, 26.8% of all eligible deaths were recorded. This was calculated using Public Health England data on the average number of deaths with underlying cause of cancer, circulatory and respiratory over two years as a denominator. Using these data may be a useful proxy for patients eligible for EPaCCS, rather than all patient deaths. However, even with this refined calculation, in-depth exploration of health professional perspectives is going to be essential to understand why low numbers of patients are being registered.

  4) Enacting change or reporting practice?

  A key issue that our evaluation highlighted is the difficulties of interpreting EPaCCS data. Having separated association from causality, we considered whether EPaCCS acts to improve practice or whether it documents and reflects what is already taking place in practice. Where, in our evaluation, items from an EPaCCS record are entered ahead of the creation of an EPaCCS template, could health professionals already be capturing data that is clinically meaningful? Could EPaCCS just be collecting what is already good practice?

  While the principle of EPaCCS is a robust one, generating evidence around its use and evaluating its impact on information sharing is far more complex. Without understanding the health professional perspective, alongside their approaches, motivations and interaction with EPaCCS, it is difficult to evaluate the effectiveness of the approach. We look forward to seeing research develop in this area to enable untested assumptions about the role of EPaCCS to be challenged. It will also hopefully lead to a better understanding of the cause of low uptake, bringing us closer to understanding whether EPaCCS can improve the coordination of end of life care for patients and their caregivers.

  1. Sleeman KE and Higginson IJ. Evidence-based policy in palliative care: time to learn from our mistakes. BMJ Supportive & Palliative Care 2016 6(4):417. doi: 10.1136/bmjspcare-2016-001250

  2. Allsop MJ, Kite S, McDermott S et al. Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation. Palliative Medicine 2016. doi: 10.1177/0269216316663881

  3. Petrova M, Riley J, Abel J et al. Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from. BMJ Supportive & Palliative Care 2016. doi: 10.1136/bmjspcare-2015-001059

  4. Wye L, Lasseter G, Simmonds B et al. Electronic palliative care coordinating systems (EPaCCS) may not facilitate home deaths: A mixed methods evaluation of end of life care in two English counties. Journal of Research in Nursing 2016 21(2):96-107. doi: 10.1177/1744987116628922

  Conflict of Interest:

  None declared

  Show Less

  Conflict of Interest:
  None declared.

  • Back to top
• Published on: 20 November 2018

  Warning - EPaCCS may NOT facilitate home deaths

  • Lesley Wye, Senior Research Fellow

  As the lead of a Marie Curie funded study of EPaCCS, I welcome the attention that electronic palliative care systems are increasingly receiving. However unlike Petrova et al, I believe the "striking" EPaCCS results on facilitating home deaths mentioned by Petrova et al may largely be explained by selection bias.

  In our mixed methods study, we too found impressive results in that those with an electronic EPaCCS...

  Show More

  As the lead of a Marie Curie funded study of EPaCCS, I welcome the attention that electronic palliative care systems are increasingly receiving. However unlike Petrova et al, I believe the "striking" EPaCCS results on facilitating home deaths mentioned by Petrova et al may largely be explained by selection bias.

  In our mixed methods study, we too found impressive results in that those with an electronic EPaCCS record were 70-78% more likely to die in the community compared to those without. However, analysis of EPaCCS databases and qualitative interviews with over 100 hospital and community professionals revealed that EPaCCS was almost exclusively used by community professionals working with those who intended to die at home. So if only community professionals register only patients being cared for in the community, the "striking" result of patients dying in the community is unsurprising.

  This paper was dismissed by Petrova et al as suffering from methodological flaws, yet the nature of these flaws were not described in the Petrova paper nor were the authors able to provide us with these details. Readers wanting to make up their own mind should look up Electronic palliative care coordinating systems (EPaCCS) may not facilitate home deaths DOI: 10.1177/1744987116628922 (1).

  Our paper is not the only one to raise doubts about the impact of EPaCCS on home deaths. A recent independent national study using mixed methods also concluded that there was no conclusive evidence of impact on place of death between EPaCCS and non-EPaCCS sites (2). Thus two independent evaluations have raised queries about the heralded effect of EPaCCS on home deaths.

  All four authors of the Petrova et al paper rightly declare that every one of them is partly funded by EPaCCS projects. I do not believe that this conflict of interest meant that they intentionally ignored more negative studies. In fact they inform us that the inclusion of our paper provoked extensive debate. But, as we point out in our paper, by only focusing on quantitative data in evaluating EPaCCS and not collecting qualitative data, misleading conclusions can easily drawn.

  1. Wye L, Lasseter G, Simmonds B, Duncan L, Percival J, Purdy S. Electronic palliative care coordinating systems (EPaCCS) may not facilitate home deaths: A mixed methods evaluation of end of life care in two English counties. Journal of Research in Nursing 2016; 21(2): 96-107. 2. Whole Systems Partnership. Independent evaluation of Electronic Palliative Care Coordination Systems (EPaCCS) in England FINAL REPORT, 2016.

  Conflict of Interest:

  None declared

  Show Less

  Conflict of Interest:
  None declared.

  • Back to top
• Published on: 20 November 2018

  Evidence based policy in palliative care - time to learn from our mistakes

  • Katherine E. Sleeman, NIHR Clinician Scientist in Palliative Medicine
  • Other Contributors:
    • Irene J. Higginson

  The article by Petrova et al is timely and thought provoking.1 EPaCCS (Electronic Palliative Care Coordination Systems) have good face value: they appear so obviously a good idea. But scratch beneath the surface, as Petrova and colleagues have done, and important challenges in public perceptions, funding, information governance, context and health care IT become apparent.

  EPaCCS are electronic information system...

  Show More

  The article by Petrova et al is timely and thought provoking.1 EPaCCS (Electronic Palliative Care Coordination Systems) have good face value: they appear so obviously a good idea. But scratch beneath the surface, as Petrova and colleagues have done, and important challenges in public perceptions, funding, information governance, context and health care IT become apparent.

  EPaCCS are electronic information systems that aim to improve coordination and communication through the recording and sharing of important information about patients' clinical condition and treatment decisions. All interventions may have benefits and harms, some of which are predictable, others less so.2 As noted by Petrova and colleagues, there is currently very little published evidence on the benefits, or the harms, of EPaCCS. This evidence is needed to tell us what the key components of any EPaCCS system are, and the contextual factors important for their successful implementation. It should include comparative data to determine effectiveness according to patient-centred outcomes, as well as qualitative data to provide information on how the intervention is working, which should be sought from patients, carers, and health care professionals.

  It is essential that we gather this evidence now, before EPaCCS are rolled out more widely. If we miss this opportunity we may find ourselves in a familiar Catch 22 situation whereby it is then impossible to test the effectiveness in a comparative trial.3 In addition, without a better understanding of the effects and key components of EPaCCS in the different contexts in which they operate, roll out could miss key ingredients, without which patients and families are not maximally benefitted. In light of the Government's recent commitment to roll out EPaCCS to the majority of the UK by 2018,4 acquisition of this evidence must be a funding priority.

  There is no doubt that EPaCCS have the potential to improve care for the dying. Research is urgently needed to determine whether or not this is the case, and what needs to be in place to maximise benefit and avoid harm, before wider roll out makes acquisition of the necessary evidence impossible. It is inconceivable that a novel chemotherapy would gain regulatory approval just because Phase I studies looked promising. We have an opportunity now to gather the evidence we need to determine the benefits and potential harms of EPaCCS. We must not waste it.

  1. Petrova M, Riley J, Abel J, et al. Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from. BMJ Support Palliat Care 2016.

  2. Currow DC, Higginson I. Time for a prospective study to evaluate the Amber Care Bundle. BMJ Support Palliat Care 2013;3(4):376-7.

  3. Sleeman KE. The Liverpool Care Pathway: benefit or harm? J R Coll Physicians Edinb 2014;44(3):214-5.

  4. Department of Health. Our Commitment to you for end of life care. The Government Response to the Review of Choice in End of Life Care. London: DH; 2016.

  Conflict of Interest:

  None declared

  Show Less

  Conflict of Interest:
  None declared.

  • Back to top