End-of-life education in the acute setting
ABSTRACT
End-of-life care (EoLC) should be seen as everyone’s business in acute hospital settings; a focus on targeted education and training in EoLC has the potential to improve the delivery of care for, and experiences of, patients and their families. We discuss the challenges associated with providing EoLC education in acute settings, and make recommendations around what should be delivered, to whom, when and how, including the measurement of impact of educational interventions. To deliver excellent education, content and delivery needs to be multifaceted, tailored to the needs of staff, and, importantly, led by the voices of patients and their families. We call on senior trust executives to resource and support the development and delivery of an EoLC education strategy to improve competencies of all staff, fostering an organisational culture of person-centred EoLC throughout any acute setting.
Introduction
‘I never asked, “Is he dying?”…maybe I should have?’ – Relative of a patient who died in hospital.
Nearly half of all deaths in England occur in hospital, and by 2040 there will be over 100,000 additional deaths annually.1,2 It should therefore be core business for hospitals to deliver high quality, person-centred care to patients in the last days of their lives, and to their families. Despite this, numerous government and charity reports over the past 5 years have highlighted instances of inadequate care experienced by patients towards the end of their lives, and by their family members who also need support at this challenging time.3–5 Of all places of death, quality of care in hospitals is most likely to be rated by bereaved relatives as poor, and least likely to be rated outstanding or excellent.6
For some of these deaths, a key component of care will be the input of specialist palliative care services. However, most end-of-life care (EoLC) is, and will increasingly be, the responsibility of staff without specialist palliative care qualifications.7 Moreover, the context of an aging population means this care will present increasing levels of complexity due to increased frailty and multimorbidity. Education and training in care of the dying is urgently needed to ensure that all staff are ‘prepared to care’, and to achieve the ‘Ambitions for end-of-life care’ set by the National Palliative and End of Life Care Partnership (Fig 1).5 We discuss the multiple challenges to achieving these ambitions, and make recommendations for providing appropriate education in EoLC in terms of content, timing and delivery, as well as methods to test effectiveness. In this article we consider EoLC within the definition of the National Institute for Health and Care Excellence (NICE) quality standard, which looks at care for people who are likely to die within 12 months.
Who to educate and when?
Educating the right people in EoLC, in the right way and about the right things, is a challenge. The aspiration that high quality EoLC should be everyone’s business means that the target audience for learning in acute trusts is everyone, from the frontline clinicians to the ward receptionists, the housekeepers, porters and the patients and their carers. This means that a number of teaching and educational strategies are needed to suit these varying roles with different requirements of knowledge and practical competency, which is a huge task. Even if learners are limited to clinical staff, high turnover across professional groups requires frequent repetition of any training programme, making it labour and time intensive. It is therefore crucial that EoLC education is kept high on all agendas – strategic and financial – in order to maintain continuing professional development and maintenance of competency for all staff at all levels.
Senior support for the prioritisation of EoLC education is especially important as hospital staff have many demands placed on their training, time and resources. End-of-life care education may seem less urgent a priority than learning about many other clinical topics such as sepsis or infection control. In the acute sector, as in other settings, it may be difficult to release staff from clinical duties for education. Consultants and registrars can be particularly difficult to engage in training outside their field of speciality. Leaders within acute trusts can provide support by prioritising EoLC education, and setting and monitoring expectations across all staff groups as part of the annual appraisal process.
End-of-life care education should start at undergraduate level for all clinical hospital staff groups and continue on a regular basis throughout their careers.8 Some hospital trusts provide mandatory EoLC training at induction and annual updates, which captures a large number of staff. This can be useful for ‘bite-size’ learning, but may be less effective for learning outcomes that require attitudinal and behavioural change.9
Sustaining the effectiveness of EoLC education is difficult. Many EoLC change programmes, with education at their core, have had short-lived success, only to fail as skills fade over time or staff move on and the learning is lost. Although there is no definitive evidence to guide the frequency of updates, EoLC education can be linked to revalidation cycles.8 For clinical staff, education in EoLC should be reviewed regularly against competencies to assess the need for further learning beyond that provided during induction or annual updates.9
What should be included in EoLC education?
End-of-life care education needs to address the whole pathway from recognition that someone may be in their last year of life, through deterioration, to the dying phase and into bereavement for those left behind. There are several national EoLC education frameworks available as resources across the UK. Examples include Health Education England’s EoLC competency framework5,7,9 and asset-based learning guidance;10 the EoLC e-learning modules11 and the EoLC education framework from NHS Scotland.12 Competencies vary from knowledge-based topics such as pain control, to teaching a member of staff to sit quietly with someone who is suffering (Table 1). End-of-life care education competencies such as practical support, symptom management and care after death represent knowledge that can be acquired; others develop skills such as communication, while attitudinal changes such as dealing with uncertainty and allowing patients to make unwise or risky choices can also form part of an educational programme. A number of these subjects are challenging to teach and reflect the complex nature of caring for people at the end of life.
Most hospital trusts in the UK have an in-house EoLC education programme;8 however, it is not clear whether these programmes cover the breadth of competencies recommended in current national documents, if the programmes include all staff and whether any consideration of local training needs has been included.
Fundamental to all EoLC care competencies is person-centred practice that ‘recognises the circumstances, concerns, goals, beliefs and cultures of the person, their family and friends, and acknowledges the significance of spiritual, emotional and religious support.’11 This sounds self-evident in theory but perhaps does not always translate into practice. While some elements of more structured education can contribute to engendering this approach, it is important to see this as about more than just knowledge, skills, and attitudes – it’s a about a culture of person-centred practice. When considering what to include in EoLC education and training, we advocate the importance of not only developing the competencies of staff, but also thinking creatively about how to develop and foster a person-centred culture around EoLC care in the acute setting.
In the same way as healthcare needs to treat patients and their families as individuals, and tailor care to meet their needs, it is important to remember that staff also have unique and individual strengths and weaknesses. As such, we would suggest that a thorough training needs assessment should be made prior to instigating new educational interventions. Staff confidence measured by self-assessment does not always correlate with competence; in fact, those with less skills may overestimate their ability.13 We would suggest linking ‘local’ information – such as the results of audit or quality improvement work, patient and carer experience, and themes from complaints and mortality reviews – to the education provided in order target areas most in need of improvement.
How can EoLC be taught?
Planning and delivering EoLC education requires an approach that attends to the needs of the individual, the context of the learning environment as well as the learning objectives of each session. Education needs to be relevant and useful for learners, well delivered and accessible, and able to influence longer term care by developing and sustaining practitioners’ knowledge, skills, attitudes, behaviours and values. The National Palliative and End of Life Care Partnership remind us of the importance of ‘knowledge-based judgement’ in the delivery of EoLC.5 While this can be obtained to some extent through e-learning and/or classroom teaching, much of what we want to engender requires behavioural or cultural change, which is unlikely to be achieved through online or didactic teaching alone.
Education examples include recognising the transition from active to palliative care, improving communication skills and providing emotional support to patients and families will need other approaches such as role modelling, interactive roleplay or simulation, and practice-based learning. Moreover, creative teaching approaches such as plays, blogs, literature and narrative approaches, can also remind learners that patients and families live in social contexts, not just in the biomedical contexts that staff in acute settings encounter them in. A multimodal approach to EoLC education is optimal where possible delivered in multiprofessional groups, which allow participants to ‘modify negative attitudes and perceptions’ and ‘remedy failures in trust and communication’ between professions and disciplines.14 Finally, including patient, public and carer involvement in the design, delivery and evaluation of education can ensure the reality of our knowledge and actions is rooted in every day experiences. An example is the quote at the start of this article which expresses powerfully the impact of not communicating to their relatives that someone is dying.
How do we know if EoLC education is effective?
The effectiveness of educational initiatives can be measured at multiple levels, each with their own benefits and challenges. Kirkpatrick’s model of training evaluations is helpful (Fig 2);15 effects are considered in four progressing levels: reaction (eg satisfaction), learning (eg confidence, knowledge and attitudes), behaviour (eg in simulated or real interactions), and results (eg patient/family experiences or outcomes).
Most evaluations focus on reaction and learning of participants as these are simple to capture using self-reported questionnaires.16 However, these are subject to reporting biases and cannot measure the true intended outcome of EoLC education – improved patient care. Assessing staff behaviours is a better way of demonstrating changes in clinical practice, yet can be challenging to achieve as measures of staff behaviour can themselves be problematic. Although behavioural assessment tools can be useful for ‘ticking off’ objective clinical tasks, they may not be so reliable at capturing person-centred care. In some studies, participants were found to score higher on behavioural measures of communication skills in simulated interactions than real interactions; does this mean staff are performing ‘worse’ in the real consultation, or are they individualising their communication in ways that these measures cannot capture?17 As such, obtaining patient and carer feedback (particularly when this can include maximising use of routinely collected patient-level data) must be prioritised as the gold standard measure for person-centred EoLC.
Crucial to measuring the effects of staff education initiatives for impact on patients and/or families is thinking carefully and realistically about the intended effects an initiative may have, and then choosing how to measure effectiveness accordingly. This needs to include a clear route from impact (of learning) on staff to impact on service users. Capturing basic elements of learner satisfaction and testing confidence and objective knowledge before and after are good starting points. However, venturing beyond these standard learning outcomes to the patient and family level requires a more innovative approach, which can include measuring experience (eg quality of care) and/or outcomes (eg symptoms). Most importantly, measures must match the aims of the training. For example, effectiveness of training in pain management at the end of life could be measured by comparing a trained and untrained group of staff on their knowledge of pain management techniques, and comparing their patients’ reports of pain. For interventions aimed more at cultural change than discrete events this link can be particularly difficult to pinpoint, and may require inclusion of qualitative evaluation components. We recommend the funding of educational initiatives, prioritising programmes that have been shown to demonstrate change at the behaviour and/or patient care level. Current unevaluated initiatives and novel proposals should be supported to link with academic partners to help undertake a high-quality evaluation. Fundamentally, unless an educational programme achieves improved EoLC for patients and their families, the organisation providing the training should question the purpose of delivering it.
Conclusion
Delivery of EoLC education in the acute sector is not easy, but it is important. The support of senior trust executives can be key to ensuring that acute care organisations resource and promote the development and delivery of a specific EoLC education strategy. These programmes should identify the staff members who may benefit from targeted EoLC education and look at what point competencies should be achieved, and then updated. Use of national guidance and competencies blended with local themes from audit and quality improvement, complaints and mortality reviews and, importantly, patient and carer experience, can help tailor content. An ideal programme should make use of up-to-date educational tools and methods that have been demonstrated to impact patient care and critically evaluate the impact of the delivered intervention. Advancing the field of EoLC education can be achieved by acute trusts engaging in research with their academic partners in order to review and refine programmes across developing care networks.
- © Royal College of Physicians 2018. All rights reserved.
References
- ↵
- Ruth K
- ↵
- ↵
- Neuberger J
- The End of Life Care Coalition
- ↵
- National Partnership for Palliative and End of Life Care
- ↵
- Office of National Statistics
- ↵
- Shipman C
- ↵
- Royal College of Physicians, Association for Palliative Medicine, National End of Life Care Pragramme
- ↵
- Health Education England, Skills for Health, Skills for Care
- ↵
- Health Education England
- ↵
- Health Education England
- ↵
- NHS Education for Scotland and the Scottish Social Services Council
- ↵
- ↵
- Barr H
- ↵
- Kirkpatrick D.
- ↵
- Brighton LJ
- ↵
- Selman L
Article Tools
Citation Manager Formats
Related Articles
- No related articles found.
Cited By...
- No citing articles found.