Discussion
The media critique of the Liverpool Care Pathway: some implications for nursing education Tessa Watts
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nhancing end-of-life care (EoLC)—the component of palliative care that is focussed on the final days or hours of life, when it is evident that a person is progressively declining (Watts, 2013)—is a global concern that is enshrined within governments’ health policies (Department of Health (DH), 2008a; Welsh Assembly Government, 2008; Australian Government, 2009). In the UK, the strategic drive to use EoLC pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) (Ellershaw et al, 1997) and the All Wales Integrated Care Priorities for the Last Days of Life (AWICP) (NHS Wales, 2012) reflects genuine commitment to enhancing compassionate, dignified care in the final days or hours of a person’s life across all care settings. EoLC pathways are promoted as best practice templates in the UK (National Institute for Health and Care Excellence, 2004; DH, 2008a; Welsh Assembly Government, 2008). Moreover, they have been enthusiastically adopted, adapted, and translated for use worldwide and for different conditions (Watts, 2012a; 2012b). Findings from several qualitative studies have revealed a perception among UK nurses and doctors that EoLC pathways contribute to care quality enhancement at this immensely difficult point in the life-course (Watts, 2012b; Chinthapalli, 2013). Moreover, large-scale LCP audits in the UK (Marie Curie Palliative Care Institute Liverpool, 2007; 2009) and a recent smaller European study (Costantini et al, 2013) have indicated that EoLC is enhanced when the LCP is used. Nonetheless, following a report in the Daily Mail (Doughty, 2012), of comments made about the LCP by Professor Patrick Pullicino, a media storm ignited. Since this time the LCP tool, and in particular its implementation, has been the subject of sensational headlines (see Box 1 for examples) and escalating, trenchant criticism in both the tabloid (e.g. the Daily Mail) and the serious (e.g. the Daily Telegraph) British press.
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Abstract
End-of-life care pathways are championed around the globe as tools that might be used to enhance the quality of care at the very end of a person’s life. This paper examines recent negative media discourse in the UK about the Liverpool Care Pathway for the Dying Patient (LCP). This media coverage may have had damaging effects, but it has also served to highlight inappropriate and even suboptimal end-of-life care. While recognising the pervading influence of organisational structures and cultures, some implications for initial and ongoing education of nurses are identified. Key words: Liverpool Care Pathway l LCP l Media l Nurse education l End-of-life care
In that they relate to clinical decision making, communication breakdown, and care processes, the concerns reported are serious and require the urgent attention of all professionals and managers involved in EoLC. When juxtaposed against the dearth of positive reporting and thus balance, it is of little surprise that this negative media discourse has left a profound sense of uncertainty and disquiet about the LCP and care at the very end of life in the minds of the public and professionals alike (Chinthapalli, 2013). Yet, at the same time, the concerns reported are disturbing, not least because they raise serious questions about aspects of some nurses’ and doctors’ practices, particularly in terms of engaging in communication about application of the LCP with dying people and their families. Curiously, in the ongoing LCP debate there has been negligible discourse about EoLC education (i.e. education focusing on the profoundly challenging and simultaneously symbolic task of recognising a person’s impending death), communication with and care of the imminently dying and their families, and LCP training. Yet these are major determinants of high quality, sensitive EoLC and, as Ellershaw and Murphy (2011) emphasised, they underpin safe, effective use of the LCP. In order that EoLC practices and
Tessa Watts is Associate Professor, College of Human and Health Sciences, Swansea University, SA2 8PP, Wales Email: [email protected]
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Discussion
Care pathway used to ‘cut costs’ claim doctors (Harris, 2012) Elderly patients are being ‘deprived of food and drink so they die quicker and free up bed space’, claim doctors (Allen, 2012) A pathway to euthanasia? Family revive father doctors ruled wasn’t worth saving (Stevens, 2012) Care path? It’s a licence to kill (Malone, 2013)
pathway use might be further enhanced, this paper considers some implications of the LCP controversy for nurses’ education specifically. However, first it presents a brief overview of EoLC pathways and the recent media critique.
EoLC pathways Care pathways focusing exclusively on a clearly defined phase of the dying trajectory, namely the last days or hours of life and the immediate bereavement period, are increasingly used worldwide. A form of ‘structured care methodology’ (Vanhaecht et al, 2010), these pathways are invariably based on the seminal work of Ellershaw and his colleagues—who, in the wake of reports of suboptimal hospital care of people dying from cancer (e.g. Mills et al, 1994), sought to enhance EoLC quality through the development and implementation of an evidence-based framework (Ellershaw et al, 1997). This framework translated best practice in hospice care for the acute care setting. Today it is commonly known as the LCP. In that they are highly structured and evidencebased, the LCP and its variants are much more than documents. The ultimate aim is for them to enable people to die well, i.e. peacefully and with dignity through optimally coordinated and regularly reviewed person-centred holistic comfort care set within a supportive, participatory milieu. Indeed, pathways incorporate ongoing engagement and shared decision making with dying people and their families, privileging their priorities and preferences where possible (Allen and Watts, 2012). However, it is imperative to recognise and understand that EoLC pathways are only guides to support a ‘change in gear’ and promote sensitive, compassionate comfort care as a person’s life draws to its natural close. They ‘must not replace clinical judgement or compromise individualised care’ (Watts, 2012a, p2366). EoLC pathways should be used only when there is consensus that the person has entered the dying phase, i.e. that death is imminent. Yet this is a complex, difficult decision that is shrouded in ambiguity and bounded in context (Watts,
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2012a). It is hardly surprising that health professionals find diagnosing dying difficult (Murtagh et al, 2004), particularly those working in acute care where the prevalent culture is biomedicine and cure. Indeed, this culture is richly encapsulated in the following words of a Foundation Year doctor who participated in Gibbins et al’s (2011) study: ‘I guess it’s the whole concept that if someone dies it’s a failure. And that’s still there; it just permeates the whole thing.’ (p394)
Moreover, in hospital settings, professionals’ experiences of working with dying people and their families may be considerably less than those working in hospice and specialist palliative care. The decision to invoke an EoLC pathway should be the outcome of complex, careful, and inclusive diagnostic decision making. Given that pathway initiation symbolically marks the transition to the final phase of life (Watts, 2012a), it is essential to engage patients (where possible) and families in the decision-making process with open, honest, clear, and sensitive communication about the dying person’s situation and the pathway’s aims. This is challenging, time-consuming, and skilled work. The recent negative media reporting about the LCP illuminates the adverse effects when inclusion, engagement, and sensitive, open communication do not take place (Watts, 2012a).
The media critique of the LCP The recent media critique has generated considerable distress and unease about both EoLC and the LCP tool among the public and many health professionals. A recent survey of UK hospital doctors (n=647) revealed that just over half of the respondents felt that negative media coverage had reduced LCP use. Moreover, 60% of respondents reporting reduced LCP use (n=194) had received requests from patients and families not to use the LCP (Chinthapalli, 2013). The survey’s response rate was very low (21%) and thus focussed on a small proportion of UK doctors who were also all based in hospitals. However, the findings do illuminate the possible effect of negative media reporting and the potential impact on the quality of care and support for those at the very end of life and their families. A search of the Nexis database of English language newspapers conducted in February 2013 for coverage of the LCP between June 2012 and January 2013 revealed the extent of the media criticism. Following the removal of duplicate reports (n=2) and international publications (n=2), 64 newspaper articles covering the LCP
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Box 1. Headlines of newspaper stories on the Liverpool Care Pathway for the Dying Patient (LCP)
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Discussion
were identified. Close reading found that only one positive account of the LCP was offered. Analysis of the news media critique of the LCP revealed four core concerns of bereaved families and some senior doctors (Box 2). Bereaved relatives’ allegations regarding EoLC decision making, communication failure, and care processes are deeply concerning. They represent deep violations of nurses’ (Nursing and Midwifery Council (NMC), 2008) and doctors’ (General Medical Council, 2006) professional codes of practice and the underpinning philosophy of palliative care, namely that it neither hastens nor postpones death and that it recognises and endorses families’ roles and shared decision making (World Health Organization, 2013). Thus, the consultation on the NHS constitution in respect of shared decision making, which extends to EoLC, as well as the ongoing independent review of the LCP, chaired by Baroness Neuberger, are welcome. However, given that the concerns reported relate to the LCP tool and EoLC practices, the current state of initial and continuing professional education and training in EoLC and LCP implementation should be examined.
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EoLC education and training EoLC is immensely challenging work that demands confidence, preparation, and expertise. Yet in hospital settings for example it may be delegated to those with the least experience (Mirando et al, 2005) and possibly the least educational preparation. The media critique of the LCP vividly illuminates how important it is that health professionals be prepared to offer compassionate, safe, and effective care; communicate confidently and sensitively with dying people, their families, and professional colleagues; and make appropriate and effective use of EoLC pathways. This is particularly pressing as the population is ageing and mortality rates are predicted to rise (Gomes and Higginson, 2008). In addition, chronic illnesses with their associated co-morbidities and complex dying trajectories are increasingly prevalent (Watts, 2012a). When combined with inequitable access to hospice care, the continued and projected predominance of hospital as the place of death juxtaposed against complex organisational and professional cultures, and people’s changing expectations, the sheer complexity of EoLC becomes apparent. Nurses have significant roles and responsibilities in EoLC provision across care settings (Costello, 2001; Dickinson et al, 2008). Therefore it is heartening that in recent years attention to and investment in developing palliative care education, particularly at pre-registration level, has
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Box 2.The media critique of the Liverpool Care Pathway for the Dying Patient (LCP): core concerns ● The ●
possibility of premature, even inappropriate pathway initiation
Relatives’ exclusion from end-of-life care (EoLC) pathway decision-making processes, particularly with regard to pathway initiation
● What
may be described as inappropriate care, specifically that relating to food, fluids, and sedation
● The
exposure of target-related financial incentives for placing patients on EoLC pathways in some parts of England as part of the Commissioning for Quality and Innovation initiative (Department of Health, 2008b)
taken place globally (Kurz and Hayes, 2006; Jacono et al, 2011; Bush, 2012). Reporting findings from their survey of UK palliative and EoLC curricula in pre-registration undergraduate nursing programmes (n=52), Dickinson et al (2008) noted that ‘palliative and end of life care are “alive and well” today in pre-registration undergraduate education’ (p167). Indeed, they found that on average 44.71 teaching hours were allocated and a range of EoLC topics were addressed, including attitudes to death and dying, communication with dying people and their families, pain and symptom control, and bereavement. At first glance Dickinson et al’s (2008) findings seem positive, particularly in light of the shifting context for EoLC and the professional requirement that nurses should be able to meet the needs of dying people and their families (NMC, 2010). Indeed, earlier empirical investigations of undergraduates and new graduates revealed a pressing need for additional pre-qualification EoLC education (e.g. Arber, 2001; LloydWilliams and Field, 2002; Hopkinson et al, 2003; Allchin, 2006; Terry and Carroll, 2008). However, it remains questionable whether nurses’ early educational preparation sufficiently equips them with the confidence and competence, even at a most fundamental level, for the complex reality of multiprofessional EoLC across care settings and implementation of EoLC pathways. The literature indicates that, in terms of pedagogical approaches, pre-registration EoLC education is frequently didactic and uni-professional, with experiential learning used to a lesser extent (Dickinson et al, 2008; Johnson et al, 2009). This is significant, as the use of didactic approaches in EoLC education has been called into question (Copp, 1994; Mok et al, 2002). Moreover, as Becker (2013) incisively observed, the most recent UK standards and competencies for pre-registration nurse education (NMC, 2010) place extremely limited emphasis on palliative and end-of-life care. This is regrettable as it is conceivable that the progress of years gone by
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may be halted and, at worst, early educational preparation may regress at what is a critical junction given the strategic direction for EoLC in the UK. Arguably, in light of the apparent dearth of recent published research and changes in pre-registration curricula in the UK, there is a pressing need for robust empirical investigation of pre-registration EoLC education. Of course, EoLC is within the province of most nurses, not only those embarking on their professional journeys. Thus continuing education is imperative, both in terms of protecting and enhancing care quality and in enabling registered nurses to demonstrate their personal and professional development. Reporting findings from their recent systematic realist review, McConnell et al (2013) noted the importance of continuing EoLC education to enhance people’s confidence in EoLC provision. Moreover, supporting workforce development in EoLC is embedded within English and Scottish EoLC strategies (DH, 2008a; Scottish Government, 2008). In the UK, numerous palliative and EoLC courses in the shape of full undergraduate and postgraduate programmes, short modules, study days, and workshops are available for nurses working at different levels, in various care settings, and with varying amounts of expertise. Yet studies have revealed that registered nurses experience problems accessing continuing education and training generally (Gould et al, 2007; Schweitzer and Krassa, 2010) and EoLC education specifically (Smith and Porock, 2009). Consequently, some individuals may not only lack the confidence to care for dying people and their families, but might even have negative attitudes toward caring for dying people (Smith and Porock, 2009). Turning to EoLC pathways specifically, their appropriate and effective use is shaped by the extent to which their purpose, scope, and limitations are understood (Watts, 2013). The facilitator’s role in supporting and sustaining EoLC pathway implementation is widely acknowledged (Mellor et al, 2004; Hockley et al, 2005; McConnell et al, 2013). The significance of employing a champion to support and sustain pathway implementation is irrefutable (Bragato and Jacobs, 2003; Hogan et al, 2011). Indeed, in Western Australia, implementation of the LCP floundered in the absence of such support (Department of Health, State of Western Australia, 2009). Yet facilitation is much more than support (Watts, 2013), in that it requires a broad repertoire of knowledge and skills coupled with willingness to collaborate. While pathway facilitators might have EoLC expertise, whether
this extends to facilitation is uncertain. Furthermore, while facilitators have used a range of pedagogical strategies to support LCP implementation, evaluation is needed of the effectiveness of these interventions in terms of influencing practice and driving and sustaining change (Watts, 2013). Indeed, research has indicated that some registered nurses feel insufficiently prepared to use EoLC pathways (Gambles et al, 2006; Walker and Read, 2010).
Educational implications of the media critique of the LCP The LCP and its variants are important practice innovations, particularly for those health professionals for whom EoLC is not part of their everyday work (Watts, 2013). As previously highlighted, in recent years much progress has been made in terms of palliative and EoLC education in the UK. Thus it is of little surprise that attention is now turning to the deleterious effects of the recent media critique on public perceptions of the LCP and care at the very end of life (e.g. Kmietowicz, 2012; Chinthapalli, 2013). Clearly there are implications for nurse educators, nurse managers, and registered nurses. Indeed, in revealing inappropriate, even suboptimal EoLC, the media storm has indicated a clear and pressing need for current initial and continuing EoLC education to be at least reviewed, in terms of both the application of the LCP (and its variants) and general EoLC. Moreover, it would seem that particular attention needs to be given to recognising when a person has entered the dying phase, communicating and sharing decisions with dying people and their families, and fundamentals of compassionate, person-centred EoLC. For nurse educators, in terms of preparing tomorrow’s nurses and on a practical level, attending to these aspects may not be without problems. In already-congested undergraduate pre-registration curricula, simply increasing the time devoted to EoLC may be impracticable. More importantly, this type of quantitative solution may not be conducive to deep learning or even shape attitudes and knowledge for practice at this early stage in future nurses’ professional careers. In addition, while practice placements are integral components of pre-registration nurse education, opportunities for all nursing students to gain even a minimal level of hospice and specialist palliative care experience are limited by virtue of placement availability and capacity. Consequently, direct, meaningful, high quality clinical experience of EoLC conjoined with opportunities to apply theory to and reflect on EoLC practice may be extremely variable.
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❛ ... in revealing inappropriate, even suboptimal end-of-life care, the media storm has indicated a clear and pressing need for current initial and continuing end-of-life care education to be at least reviewed ...❜
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Discussion
Given these challenges and the need to shape attitudes and enhance knowledge and skills development in these challenging times, the chance to consider opportunities for innovative learning, teaching, and assessment strategies should not be missed. Pedagogical research conducted in North America and Australia (Gillan et al, 2012; Kopp and Hanson, 2012; Moreland et al, 2012) has pointed to the positive contribution in EoLC education of experiential learning in the shape of diverse, interactive, guided simulation, e.g. role play, high-fidelity technology (human mannequins), and gaming based on case studies, particularly when combined with more traditional, didactic approaches to learning. Undoubtedly, further research evaluating the effectiveness of simulation learning in EoLC education is required. Nevertheless, such innovation reflects the broader acceptance of simulation in nurse education as a means of enhancing knowledge for practice, communication, critical thinking, and decision-making skills (Feingold et al, 2004; Baillie and Curzio, 2009; Cant and Cooper, 2010) in safe, relatively controlled environments. In terms of continuing EoLC education, when set against the context of scarce human and financial resources, the educational challenges for organisations, nurse managers, educators, and individual nurses are even greater. Nurse managers are ideally placed to promote and facilitate a culture of life-long learning and to support and encourage nurses to consolidate their knowledge, skills, and attitudes in relation to EoLC and thus develop practice. Moreover, by working collaboratively with educators it should be possible to design and develop alternative learning opportunities that, in the face of ongoing resource restraint, will support nurses’ personal and professional development and augment practice. It is possible that the many online, distance, and work-based learning education opportunities that have been developed to address the challenges of continuing education generally may be of some value. Yet these approaches may not suit the learning styles of all individuals, and others may need to learn how to learn. Moreover, it is recognised that there are different interpretations and forms of work-based learning (Cameron et al, 2012). Arguably, given the particular concerns raised about LCP implementation, it would seem that there remains a need to find more effective and innovative approaches to continuing EoLC education. At the same time there is an onus on nurses to seek opportunities to enhance practice through engaging in continuous professional development and learning from practice.
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Conclusions The ongoing LCP storm in the UK reminds us of the importance of valuing and sustaining initial and ongoing professional EoLC education. Carefully constructed EoLC curricula that are subject to methodical evaluation, review, and enhancement are undoubtedly needed. Where underpinned by adult learning principles, informed by key stakeholders, incorporating high quality experiential and meaningful reflective learning, and utilising new technologies, curricula have the potential to enhance nurses’ knowledge, skills, attitudes, behaviours, and confidence with regard to providing effective, compassionate EoLC. Whether at pre- or post-registration levels, education should include awareness of the media critique of EoLC pathways, its impact, and nurses’ roles and responsibilities in ensuring these pathways are appropriately used and applied. Yet, to truly realise and sustain the full potential of EoLC educational innovation on practice development and enhancement and thus EoLC quality, there is a more pressing need: namely that of authentic leadership and profound and lasting cultural change.
❛In already -congested undergraduate pre-registration curricula, simply increasing the time devoted to end-of-life care may be impracticable.❜
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Discussion
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The media critique of the Liverpool Care Pathway: some implications for nursing education Tessa Watts
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nhancing end-of-life care (EoLC)—the component of palliative care that is focussed on the final days or hours of life, when it is evident that a person is progressively declining (Watts, 2013)—is a global concern that is enshrined within governments’ health policies (Department of Health (DH), 2008a; Welsh Assembly Government, 2008; Australian Government, 2009). In the UK, the strategic drive to use EoLC pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) (Ellershaw et al, 1997) and the All Wales Integrated Care Priorities for the Last Days of Life (AWICP) (NHS Wales, 2012) reflects genuine commitment to enhancing compassionate, dignified care in the final days or hours of a person’s life across all care settings. EoLC pathways are promoted as best practice templates in the UK (National Institute for Health and Care Excellence, 2004; DH, 2008a; Welsh Assembly Government, 2008). Moreover, they have been enthusiastically adopted, adapted, and translated for use worldwide and for different conditions (Watts, 2012a; 2012b). Findings from several qualitative studies have revealed a perception among UK nurses and doctors that EoLC pathways contribute to care quality enhancement at this immensely difficult point in the life-course (Watts, 2012b; Chinthapalli, 2013). Moreover, large-scale LCP audits in the UK (Marie Curie Palliative Care Institute Liverpool, 2007; 2009) and a recent smaller European study (Costantini et al, 2013) have indicated that EoLC is enhanced when the LCP is used. Nonetheless, following a report in the Daily Mail (Doughty, 2012), of comments made about the LCP by Professor Patrick Pullicino, a media storm ignited. Since this time the LCP tool, and in particular its implementation, has been the subject of sensational headlines (see Box 1 for examples) and escalating, trenchant criticism in both the tabloid (e.g. the Daily Mail) and the serious (e.g. the Daily Telegraph) British press.
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Abstract
End-of-life care pathways are championed around the globe as tools that might be used to enhance the quality of care at the very end of a person’s life. This paper examines recent negative media discourse in the UK about the Liverpool Care Pathway for the Dying Patient (LCP). This media coverage may have had damaging effects, but it has also served to highlight inappropriate and even suboptimal end-of-life care. While recognising the pervading influence of organisational structures and cultures, some implications for initial and ongoing education of nurses are identified. Key words: Liverpool Care Pathway l LCP l Media l Nurse education l End-of-life care
In that they relate to clinical decision making, communication breakdown, and care processes, the concerns reported are serious and require the urgent attention of all professionals and managers involved in EoLC. When juxtaposed against the dearth of positive reporting and thus balance, it is of little surprise that this negative media discourse has left a profound sense of uncertainty and disquiet about the LCP and care at the very end of life in the minds of the public and professionals alike (Chinthapalli, 2013). Yet, at the same time, the concerns reported are disturbing, not least because they raise serious questions about aspects of some nurses’ and doctors’ practices, particularly in terms of engaging in communication about application of the LCP with dying people and their families. Curiously, in the ongoing LCP debate there has been negligible discourse about EoLC education (i.e. education focusing on the profoundly challenging and simultaneously symbolic task of recognising a person’s impending death), communication with and care of the imminently dying and their families, and LCP training. Yet these are major determinants of high quality, sensitive EoLC and, as Ellershaw and Murphy (2011) emphasised, they underpin safe, effective use of the LCP. In order that EoLC practices and
Tessa Watts is Associate Professor, College of Human and Health Sciences, Swansea University, SA2 8PP, Wales Email: [email protected]
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Discussion
Care pathway used to ‘cut costs’ claim doctors (Harris, 2012) Elderly patients are being ‘deprived of food and drink so they die quicker and free up bed space’, claim doctors (Allen, 2012) A pathway to euthanasia? Family revive father doctors ruled wasn’t worth saving (Stevens, 2012) Care path? It’s a licence to kill (Malone, 2013)
pathway use might be further enhanced, this paper considers some implications of the LCP controversy for nurses’ education specifically. However, first it presents a brief overview of EoLC pathways and the recent media critique.
EoLC pathways Care pathways focusing exclusively on a clearly defined phase of the dying trajectory, namely the last days or hours of life and the immediate bereavement period, are increasingly used worldwide. A form of ‘structured care methodology’ (Vanhaecht et al, 2010), these pathways are invariably based on the seminal work of Ellershaw and his colleagues—who, in the wake of reports of suboptimal hospital care of people dying from cancer (e.g. Mills et al, 1994), sought to enhance EoLC quality through the development and implementation of an evidence-based framework (Ellershaw et al, 1997). This framework translated best practice in hospice care for the acute care setting. Today it is commonly known as the LCP. In that they are highly structured and evidencebased, the LCP and its variants are much more than documents. The ultimate aim is for them to enable people to die well, i.e. peacefully and with dignity through optimally coordinated and regularly reviewed person-centred holistic comfort care set within a supportive, participatory milieu. Indeed, pathways incorporate ongoing engagement and shared decision making with dying people and their families, privileging their priorities and preferences where possible (Allen and Watts, 2012). However, it is imperative to recognise and understand that EoLC pathways are only guides to support a ‘change in gear’ and promote sensitive, compassionate comfort care as a person’s life draws to its natural close. They ‘must not replace clinical judgement or compromise individualised care’ (Watts, 2012a, p2366). EoLC pathways should be used only when there is consensus that the person has entered the dying phase, i.e. that death is imminent. Yet this is a complex, difficult decision that is shrouded in ambiguity and bounded in context (Watts,
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2012a). It is hardly surprising that health professionals find diagnosing dying difficult (Murtagh et al, 2004), particularly those working in acute care where the prevalent culture is biomedicine and cure. Indeed, this culture is richly encapsulated in the following words of a Foundation Year doctor who participated in Gibbins et al’s (2011) study: ‘I guess it’s the whole concept that if someone dies it’s a failure. And that’s still there; it just permeates the whole thing.’ (p394)
Moreover, in hospital settings, professionals’ experiences of working with dying people and their families may be considerably less than those working in hospice and specialist palliative care. The decision to invoke an EoLC pathway should be the outcome of complex, careful, and inclusive diagnostic decision making. Given that pathway initiation symbolically marks the transition to the final phase of life (Watts, 2012a), it is essential to engage patients (where possible) and families in the decision-making process with open, honest, clear, and sensitive communication about the dying person’s situation and the pathway’s aims. This is challenging, time-consuming, and skilled work. The recent negative media reporting about the LCP illuminates the adverse effects when inclusion, engagement, and sensitive, open communication do not take place (Watts, 2012a).
The media critique of the LCP The recent media critique has generated considerable distress and unease about both EoLC and the LCP tool among the public and many health professionals. A recent survey of UK hospital doctors (n=647) revealed that just over half of the respondents felt that negative media coverage had reduced LCP use. Moreover, 60% of respondents reporting reduced LCP use (n=194) had received requests from patients and families not to use the LCP (Chinthapalli, 2013). The survey’s response rate was very low (21%) and thus focussed on a small proportion of UK doctors who were also all based in hospitals. However, the findings do illuminate the possible effect of negative media reporting and the potential impact on the quality of care and support for those at the very end of life and their families. A search of the Nexis database of English language newspapers conducted in February 2013 for coverage of the LCP between June 2012 and January 2013 revealed the extent of the media criticism. Following the removal of duplicate reports (n=2) and international publications (n=2), 64 newspaper articles covering the LCP
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Box 1. Headlines of newspaper stories on the Liverpool Care Pathway for the Dying Patient (LCP)
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Discussion
were identified. Close reading found that only one positive account of the LCP was offered. Analysis of the news media critique of the LCP revealed four core concerns of bereaved families and some senior doctors (Box 2). Bereaved relatives’ allegations regarding EoLC decision making, communication failure, and care processes are deeply concerning. They represent deep violations of nurses’ (Nursing and Midwifery Council (NMC), 2008) and doctors’ (General Medical Council, 2006) professional codes of practice and the underpinning philosophy of palliative care, namely that it neither hastens nor postpones death and that it recognises and endorses families’ roles and shared decision making (World Health Organization, 2013). Thus, the consultation on the NHS constitution in respect of shared decision making, which extends to EoLC, as well as the ongoing independent review of the LCP, chaired by Baroness Neuberger, are welcome. However, given that the concerns reported relate to the LCP tool and EoLC practices, the current state of initial and continuing professional education and training in EoLC and LCP implementation should be examined.
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EoLC education and training EoLC is immensely challenging work that demands confidence, preparation, and expertise. Yet in hospital settings for example it may be delegated to those with the least experience (Mirando et al, 2005) and possibly the least educational preparation. The media critique of the LCP vividly illuminates how important it is that health professionals be prepared to offer compassionate, safe, and effective care; communicate confidently and sensitively with dying people, their families, and professional colleagues; and make appropriate and effective use of EoLC pathways. This is particularly pressing as the population is ageing and mortality rates are predicted to rise (Gomes and Higginson, 2008). In addition, chronic illnesses with their associated co-morbidities and complex dying trajectories are increasingly prevalent (Watts, 2012a). When combined with inequitable access to hospice care, the continued and projected predominance of hospital as the place of death juxtaposed against complex organisational and professional cultures, and people’s changing expectations, the sheer complexity of EoLC becomes apparent. Nurses have significant roles and responsibilities in EoLC provision across care settings (Costello, 2001; Dickinson et al, 2008). Therefore it is heartening that in recent years attention to and investment in developing palliative care education, particularly at pre-registration level, has
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Box 2.The media critique of the Liverpool Care Pathway for the Dying Patient (LCP): core concerns ● The ●
possibility of premature, even inappropriate pathway initiation
Relatives’ exclusion from end-of-life care (EoLC) pathway decision-making processes, particularly with regard to pathway initiation
● What
may be described as inappropriate care, specifically that relating to food, fluids, and sedation
● The
exposure of target-related financial incentives for placing patients on EoLC pathways in some parts of England as part of the Commissioning for Quality and Innovation initiative (Department of Health, 2008b)
taken place globally (Kurz and Hayes, 2006; Jacono et al, 2011; Bush, 2012). Reporting findings from their survey of UK palliative and EoLC curricula in pre-registration undergraduate nursing programmes (n=52), Dickinson et al (2008) noted that ‘palliative and end of life care are “alive and well” today in pre-registration undergraduate education’ (p167). Indeed, they found that on average 44.71 teaching hours were allocated and a range of EoLC topics were addressed, including attitudes to death and dying, communication with dying people and their families, pain and symptom control, and bereavement. At first glance Dickinson et al’s (2008) findings seem positive, particularly in light of the shifting context for EoLC and the professional requirement that nurses should be able to meet the needs of dying people and their families (NMC, 2010). Indeed, earlier empirical investigations of undergraduates and new graduates revealed a pressing need for additional pre-qualification EoLC education (e.g. Arber, 2001; LloydWilliams and Field, 2002; Hopkinson et al, 2003; Allchin, 2006; Terry and Carroll, 2008). However, it remains questionable whether nurses’ early educational preparation sufficiently equips them with the confidence and competence, even at a most fundamental level, for the complex reality of multiprofessional EoLC across care settings and implementation of EoLC pathways. The literature indicates that, in terms of pedagogical approaches, pre-registration EoLC education is frequently didactic and uni-professional, with experiential learning used to a lesser extent (Dickinson et al, 2008; Johnson et al, 2009). This is significant, as the use of didactic approaches in EoLC education has been called into question (Copp, 1994; Mok et al, 2002). Moreover, as Becker (2013) incisively observed, the most recent UK standards and competencies for pre-registration nurse education (NMC, 2010) place extremely limited emphasis on palliative and end-of-life care. This is regrettable as it is conceivable that the progress of years gone by
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Discussion
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may be halted and, at worst, early educational preparation may regress at what is a critical junction given the strategic direction for EoLC in the UK. Arguably, in light of the apparent dearth of recent published research and changes in pre-registration curricula in the UK, there is a pressing need for robust empirical investigation of pre-registration EoLC education. Of course, EoLC is within the province of most nurses, not only those embarking on their professional journeys. Thus continuing education is imperative, both in terms of protecting and enhancing care quality and in enabling registered nurses to demonstrate their personal and professional development. Reporting findings from their recent systematic realist review, McConnell et al (2013) noted the importance of continuing EoLC education to enhance people’s confidence in EoLC provision. Moreover, supporting workforce development in EoLC is embedded within English and Scottish EoLC strategies (DH, 2008a; Scottish Government, 2008). In the UK, numerous palliative and EoLC courses in the shape of full undergraduate and postgraduate programmes, short modules, study days, and workshops are available for nurses working at different levels, in various care settings, and with varying amounts of expertise. Yet studies have revealed that registered nurses experience problems accessing continuing education and training generally (Gould et al, 2007; Schweitzer and Krassa, 2010) and EoLC education specifically (Smith and Porock, 2009). Consequently, some individuals may not only lack the confidence to care for dying people and their families, but might even have negative attitudes toward caring for dying people (Smith and Porock, 2009). Turning to EoLC pathways specifically, their appropriate and effective use is shaped by the extent to which their purpose, scope, and limitations are understood (Watts, 2013). The facilitator’s role in supporting and sustaining EoLC pathway implementation is widely acknowledged (Mellor et al, 2004; Hockley et al, 2005; McConnell et al, 2013). The significance of employing a champion to support and sustain pathway implementation is irrefutable (Bragato and Jacobs, 2003; Hogan et al, 2011). Indeed, in Western Australia, implementation of the LCP floundered in the absence of such support (Department of Health, State of Western Australia, 2009). Yet facilitation is much more than support (Watts, 2013), in that it requires a broad repertoire of knowledge and skills coupled with willingness to collaborate. While pathway facilitators might have EoLC expertise, whether
this extends to facilitation is uncertain. Furthermore, while facilitators have used a range of pedagogical strategies to support LCP implementation, evaluation is needed of the effectiveness of these interventions in terms of influencing practice and driving and sustaining change (Watts, 2013). Indeed, research has indicated that some registered nurses feel insufficiently prepared to use EoLC pathways (Gambles et al, 2006; Walker and Read, 2010).
Educational implications of the media critique of the LCP The LCP and its variants are important practice innovations, particularly for those health professionals for whom EoLC is not part of their everyday work (Watts, 2013). As previously highlighted, in recent years much progress has been made in terms of palliative and EoLC education in the UK. Thus it is of little surprise that attention is now turning to the deleterious effects of the recent media critique on public perceptions of the LCP and care at the very end of life (e.g. Kmietowicz, 2012; Chinthapalli, 2013). Clearly there are implications for nurse educators, nurse managers, and registered nurses. Indeed, in revealing inappropriate, even suboptimal EoLC, the media storm has indicated a clear and pressing need for current initial and continuing EoLC education to be at least reviewed, in terms of both the application of the LCP (and its variants) and general EoLC. Moreover, it would seem that particular attention needs to be given to recognising when a person has entered the dying phase, communicating and sharing decisions with dying people and their families, and fundamentals of compassionate, person-centred EoLC. For nurse educators, in terms of preparing tomorrow’s nurses and on a practical level, attending to these aspects may not be without problems. In already-congested undergraduate pre-registration curricula, simply increasing the time devoted to EoLC may be impracticable. More importantly, this type of quantitative solution may not be conducive to deep learning or even shape attitudes and knowledge for practice at this early stage in future nurses’ professional careers. In addition, while practice placements are integral components of pre-registration nurse education, opportunities for all nursing students to gain even a minimal level of hospice and specialist palliative care experience are limited by virtue of placement availability and capacity. Consequently, direct, meaningful, high quality clinical experience of EoLC conjoined with opportunities to apply theory to and reflect on EoLC practice may be extremely variable.
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❛ ... in revealing inappropriate, even suboptimal end-of-life care, the media storm has indicated a clear and pressing need for current initial and continuing end-of-life care education to be at least reviewed ...❜
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Discussion
Given these challenges and the need to shape attitudes and enhance knowledge and skills development in these challenging times, the chance to consider opportunities for innovative learning, teaching, and assessment strategies should not be missed. Pedagogical research conducted in North America and Australia (Gillan et al, 2012; Kopp and Hanson, 2012; Moreland et al, 2012) has pointed to the positive contribution in EoLC education of experiential learning in the shape of diverse, interactive, guided simulation, e.g. role play, high-fidelity technology (human mannequins), and gaming based on case studies, particularly when combined with more traditional, didactic approaches to learning. Undoubtedly, further research evaluating the effectiveness of simulation learning in EoLC education is required. Nevertheless, such innovation reflects the broader acceptance of simulation in nurse education as a means of enhancing knowledge for practice, communication, critical thinking, and decision-making skills (Feingold et al, 2004; Baillie and Curzio, 2009; Cant and Cooper, 2010) in safe, relatively controlled environments. In terms of continuing EoLC education, when set against the context of scarce human and financial resources, the educational challenges for organisations, nurse managers, educators, and individual nurses are even greater. Nurse managers are ideally placed to promote and facilitate a culture of life-long learning and to support and encourage nurses to consolidate their knowledge, skills, and attitudes in relation to EoLC and thus develop practice. Moreover, by working collaboratively with educators it should be possible to design and develop alternative learning opportunities that, in the face of ongoing resource restraint, will support nurses’ personal and professional development and augment practice. It is possible that the many online, distance, and work-based learning education opportunities that have been developed to address the challenges of continuing education generally may be of some value. Yet these approaches may not suit the learning styles of all individuals, and others may need to learn how to learn. Moreover, it is recognised that there are different interpretations and forms of work-based learning (Cameron et al, 2012). Arguably, given the particular concerns raised about LCP implementation, it would seem that there remains a need to find more effective and innovative approaches to continuing EoLC education. At the same time there is an onus on nurses to seek opportunities to enhance practice through engaging in continuous professional development and learning from practice.
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Conclusions The ongoing LCP storm in the UK reminds us of the importance of valuing and sustaining initial and ongoing professional EoLC education. Carefully constructed EoLC curricula that are subject to methodical evaluation, review, and enhancement are undoubtedly needed. Where underpinned by adult learning principles, informed by key stakeholders, incorporating high quality experiential and meaningful reflective learning, and utilising new technologies, curricula have the potential to enhance nurses’ knowledge, skills, attitudes, behaviours, and confidence with regard to providing effective, compassionate EoLC. Whether at pre- or post-registration levels, education should include awareness of the media critique of EoLC pathways, its impact, and nurses’ roles and responsibilities in ensuring these pathways are appropriately used and applied. Yet, to truly realise and sustain the full potential of EoLC educational innovation on practice development and enhancement and thus EoLC quality, there is a more pressing need: namely that of authentic leadership and profound and lasting cultural change.
❛In already -congested undergraduate pre-registration curricula, simply increasing the time devoted to end-of-life care may be impracticable.❜
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Discussion
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