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Education
Exploring education and training needs among the palliative care workforce Christine Ingleton,1 Clare Gardiner,2 Jane E Seymour,3 Naomi Richards,4 Merryn Gott5
1
School of Nursing and Midwifery, The University of Sheffield, Sheffield, UK 2 School of Health and Related Research (ScHARR), The University of Sheffield, Sheffield, UK 3 School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Queen’s Medical Centre, Nottingham, UK 4 School of Nursing and Midwifery, The University of Sheffield, Sheffield, UK 5 School of Nursing, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand Correspondence to Professor Christine Ingleton, School of Nursing and Midwifery, The University of Sheffield, 387 Glossop Road, Sheffield S10 2HQ, UK; [email protected] Received 6 March 2012 Revised 27 November 2012 Accepted 2 January 2013 Published Online First 13 February 2013
To cite: Ingleton C, Gardiner C, Seymour JE, et al. BMJ Supportive & Palliative Care 2013;3:207–212.
ABSTRACT Objectives Education and training are seen as ‘absolutely essential parts of providing palliative care’. As part of a larger study to explore the extent of palliative care need in two acute hospital settings, we report the perceptions of healthcare professionals regarding their training and educational needs. Methods In Phase 1, we undertook eight focus groups and four individual interviews with 58 health professionals from general practice, specialist palliative care and acute hospitals, exploring perceived education and training priorities. Phase 2 of the study involved a survey of palliative care need at two hospitals in England. Hospital based doctors and nurses completed questionnaires to identify patients with palliative care needs and to respond to questions about their training and education needs. Results Various barriers exist to the provision and management of palliative care, not least a need for more education and training. Focus group participants felt they were not adequately trained to address prognosis and goals of care with patients and their families. In Phase 2 of the study, 171 nursing staff and 81 medical staff completed the questionnaire and two-thirds of our sample felt they required additional training in palliative care. Conclusions Although important, the use of standardised care pathways alongside the provision of education and training for healthcare professionals alone will not improve quality of care. More work is needed to examine and clarify the interplay of: behaviour change, setting, the ‘cure’ orientation approach, type of health professional and nature of any educational intervention in order to effect sustained behavioural change.
INTRODUCTION The identification of patients with palliative care needs presents a recognised challenge.1–3 Healthcare professionals have reported differing understandings of what
Ingleton C, et al. BMJ Supportive & Palliative Care 2013;3:207–212. doi:10.1136/bmjspcare-2012-000233
constitutes a ‘palliative care’ patient 1 4 and have reported difficulties with recognising when a palliative care approach may be appropriate.2 This was evident in a study conducted in an English acute hospital in 2001 which aimed to identify the proportion of adult (over 18 years) inpatients with palliative care needs according to medical and nursing staff.5 While 23% of the inpatient population were identified as having palliative care needs, there was a lack of concurrence between medical and nursing staff regarding which patients had palliative care needs.5 A recent systematic review identified a lack of validated criteria for identifying patients who would benefit from a transition to a palliative care approach, and highlighted that inconsistencies in the identification of patients with palliative care needs may have a negative impact on care delivery.6 There are significant implications of a lack of consensus in identifying which patients have palliative care needs. Poor continuity of care, inadequate service provision and support, and excess economic cost have all been suggested as consequences of inconsistent identification of patients with palliative care needs.2 4 In response to calls for improved identification of patients nearing the end-of-life, policymakers and researchers have called for improvements in training and education for all health professionals who provide care to patients at the end-of-life. Virtually all healthcare practitioners who come into contact with patients require some knowledge of the unique needs of patients facing death, and their own responses to these needs. Recent UK policy recommends that health professionals should be educated and trained to identify patients approaching the end-of-life, and to recognise when patients are dying.7 The 207
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Education End of Life Strategy for England has acknowledged an expanded role for ‘generalist’ palliative care providers as the backbone of the palliative care workforce, and has highlighted palliative care provision as core to the role of all health professionals.8 Key to appropriate palliative care management is ensuring a well trained and appropriately equipped workforce. The recently published Palliative Care Funding Review recommends that education and training are seen as ‘absolutely essential parts of providing palliative care’.9 A report by the National End of Life Care Programme also highlights that significant end of life care educational needs remain for medical and nursing staff in primary care.7 Drawing on a National Institute for Health Research funded project which explored transitions to palliative care in acute hospitals, we report here the perspectives of healthcare professionals regarding their perceived education and training needs and priorities. While we acknowledge that the concept of ‘transition’ to palliative care is not widely held in the acute hospital setting, within this context a transition is defined as a change of focus in the goals of a patient’s care from ‘active treatment,’ where the focus is solely on cure or management of a chronic disease, to a ‘palliative care’ approach, where consideration is given to maximising quality of life. Sample and methods
In Phase 1 of the study we conducted and tape-recorded eight focus groups and four individual interviews with 58 health professionals involved in palliative care provision in either secondary or primary care settings, in two contrasting areas of England. More specifically, four focus groups were held at General Practices (n=28), and four focus groups (n=26) and four interviews (n=4) were held in acute hospitals and hospices. Individual interviews were held with Consultant Geriatricians who wanted to participate in the study, but for practical reasons could not attend a focus group. This phase aimed to explore barriers to palliative care provision within acute hospitals. Data were coded using NVIVO and analysed thematically. Analysis incorporated key elements of a modified grounded theory approach. Three researchers read the transcripts individually (MG, CG and CI), and independently noted down the core themes that emerged. Notes were cross-compared and any discrepancies discussed, although the aim was not to achieve complete consensus as the researchers brought unique perspectives and interests to their analysis. Detailed methods have been reported elsewhere.2 Phase 2 of the study comprised a questionnaire survey of hospital inpatients at two acute hospitals in England. Although both are in the north of England, these settings were selected because they serve sociodemographically distinct populations. Royal Lancaster Infirmary serves a predominantly white Caucasian semi-rural/ remote rural population. By contrast, Sheffield 208
Northern General Hospital services a largely urban, more economically disadvantaged and ethically diverse area. The surveys were undertaken at Sheffield’s Northern General Hospital in May 2010 and at Lancaster Royal Infirmary in November 2010. Each ward was visited by a team of two researchers at some point during a 2 week survey period. Inclusion criteria were: patients aged 18 years and over resident in the ward at 09:00 on the day the ward was surveyed. Non-English speaking patients and deaf patients were excluded due to a lack of translation facilities. As part of this survey, doctors and nurses were asked to complete questionnaires identifying inpatients with palliative care needs according to a standardised definition (Canadian Pall Care Association, 1997);i and stating the reason for admission and current approach to care. For patients with identified palliative care needs, further questions were asked regarding: appropriateness of admission; whether the prognosis and care approach had been discussed with the patient; and whether the health professional felt they had sufficient training and education in palliative care. Survey data were analysed with the aid of SPSS to produce descriptive statistics, alongside free text comments. All data were collected by a team of 30 experienced researchers; data collected from hospital case notes were collected by researchers with a clinical background in medicine or nursing. It was estimated that 30 researchers were needed as data were collected from over 1500 patients and over 300 staff within a 2 week census period. Details regarding the recruitment, training and support of research staff are reported elsewhere.2 All researchers undertook indepth training in survey methodology and data collection prior to the study commencing. As the research team comprised 30 members, part of the training programme involved issues relating to interrater reliability, establishing levels of agreement and reaching consensus decisions. During the two hospital surveys, 171 nursing staff and 80 medical staff across all wards completed questionnaires, administered by the researchers, about their experience of delivering palliative care and whether they perceived that they could benefit from further training. All data were recorded onto anonymised paper proformas and were subsequently transferred onto an SPSS database for data cleaning. Descriptive analyses were used to describe the data and Cohen’s κ measure of chance corrected agreement was used to assess agreement between medical staff, nursing staff, and Gold Standards Framework (GSF) criteria regarding identification of patients with palliative care needs.
i
‘Palliative care is the combination of active and compassionate therapies intended to comfort and support individuals and families who are living with or dying from a progressive life threatening illness’ (Canadian Palliative Care Association, 1997).
Ingleton C, et al. BMJ Supportive & Palliative Care 2013;3:207–212. doi:10.1136/bmjspcare-2012-000233
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Education The study was approved by the Sheffield research ethics committee and the Nottingham 1 Research Ethics Committee. Research Governance approval was granted by the relevant NHS Trusts. Findings Focus groups and individual interviews
Findings from focus groups/interview data revealed that various barriers exist to the provision and management of palliative care in acute hospitals. These included: difficulty of ‘standing back’ in an acute hospital situation; professional hierarchies that limited the ability of junior medical and nursing staff to input decisions on care; and poor communication. These data have been reported elsewhere.2 Here we present data from a cross-cutting theme: education and training. Many of the participants, particularly doctors and nurses in non-specialist settings, felt they were not adequately trained or confident in administering analgesics. Neither did they feel they had the requisite communication skills to engage in sensitive discussions regarding prognosis and goals of care with patients and their families: It’s about the experience of the practitioners isn’t it and the confidence to be able to deal with certain situations for example pain management. If you’re not used to dealing with certain analgesics, with morphine, you’re not going to feel confident about morphine, or an alternative to morphine if the pain’s not controlled or if there are too many side effects, so I think part of it is the experience of the practitioner that is a barrier. Partly I think it’s something to do with psychological approach as well. Are you prepared to think like this, are you prepared to imagine what’s going to happen in the process of managing these symptoms because that’s quite hard. (Primary care, general practitioner) I don’t think there’s enough staff trained in palliative care on the acute wards You might have the palliative care nurse going in but they [general nurses] will call the palliative care nurse in for advice. I think the general nurses on the ward, especially if a lot of them are still only training, you could have an acute medical ward, an acute surgical ward, they don’t have the skills in communication or palliation to manage them properly. I’m not saying that the specialist nurses don’t but on the 24 hour basis that they’re different. (Primary care, general practitioner)
The use of a care pathway, at an appropriate time, was identified by some participants, from specialist and non-specialist settings as a way of recognising the point of transition to palliative care with the potential to improve the quality of care: I think the end-of-life care pathway has been the key really in its widespread implementation................, but it’s making sure that people use that at an appropriate time. That’s the key really, it’s making sure that people
implement it and don’t leave it too late and I think sometimes it’s not an easy decision to decide when somebody is actually in the dying phases and I think it’s key in terms of training that we make sure that we instigate and use those end-of-life pathways when they’re appropriate and I think that needs more senior involvement really. (Registrar geriatrician, secondary care)
However, it was acknowledged by participants across the sample group, that education and training alone were not sufficient for the delivery of quality palliative care, and that changing attitudes and beliefs were key to effecting sustained behavioural changes: Having been in a hospital, in medicine, for so many years I’ve seen education … a lot of money has been poured into education and training and lot of things are happening and I accept it is an important part. In some areas I’ve seen education making a change. I don’t think that education alone is enough because you’ve done so much training to different groups and yet you see no real improvement in practice so therefore for me the important part is the personal attitude. If you don’t have a willingness, a will to deliver something as a person-centred approach or something you’re not going to do it if you don’t change your attitude. No matter how many lectures you attend, how much training you go to but it is, I think, up to individuals that they have the desire to deliver quality care. (Secondary care, palliative medicine consultant).
The need to provide palliative care to those dying with non-malignant chronic diseases was acknowledged by participants. Alongside this was recognition that there was limited confidence among some healthcare teams in the recognition, assessment and management of such individuals. The nurse quoted below struggled with the identification and management of dementia: And the doctors don’t have the specialism in their teams either to deal with that. We would love to do it ( provide care) to but again I don’t think I personally would know how to recognise somebody with dementia. Obviously you’d look for signs from other diseases but it’s sort of coming to the end....dementia and I didn’t, certainly at first when I first started doing it, I wasn’t aware. You know you sort of think there does come a time when they stop feeding and stop eating and drinking but you think oh you can’t do that, there’s nothing, physically you don’t look as bad as you should do. It’s quite hard I think. I think we need additional training if we’re going to take that on but I do think it’s something that should be done. (Secondary care, nurse) Survey findings
During the two hospital surveys, 171 nursing staff and 80 medical staff across all wards completed questionnaires, administered by the researchers, about their experience of delivering palliative care and whether they perceived that they could benefit from further
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Education training. They were also asked to rate the perceived quality of care in their respective wards and within their hospital. Of those who completed the questionnaire, 97% of nursing staff and 95% of medical staff recognised that providing palliative care was part of their role (See table 1). Sixty-nine per cent of nurses and 63% of doctors said they felt they required more specific training in palliative care and 95% of nurses and 88% of doctors confirmed that they would take up additional training in palliative care if it were offered to them. When asked for details about their previous palliative care training, 49% of nursing staff reported they had received no specific training in palliative care within the previous 5 years (table 1). For those who Table 1 Palliative care education and training needs for nursing (n=171) and medical (n=80) staff Nursing staff: previous training received No prior training in palliative care received within previous 5 years General study days LCP University course Previously worked in specialist palliative care setting Syringe driver Communication skills training Other No response Nursing staff: training would like to receive General training in palliative care Use of medication LCP Communication skills/breaking bad news/bereavement counselling Psychological/emotional/spiritual issues When to initiate palliative care None required/No response Medical staff: previous training received As part of undergraduate training General training post registration Previously worked in specialist palliative care setting Medication/symptom management LCP Communication skills training No response Medical staff: training would like to receive Medications General training LCP Initiating palliative care and who needs it What services exist and are available locally Communication None required/No response LCP, Liverpool Care Pathway.
210
n
%
84
49.1
25 18 17 12 4 1 6 4
14.6 10.5 9.9 7.0 2.3 0.6 3.5
39 27 15 11
22.8 15.8 8.8 6.4
4 3 72
2.3 1.8 42.1
28 11 10 2 2 1 19
35.0 13.8 12.5 2.5 2.5 1.2 23.8
18 14 7 4 3 1 26
22.5 17.5 8.8 5.0 3.8 1.3 32.5
had received some training, this had occurred on general study days, during their university course, or involved specific training related to the implementation of the Liverpool Care Pathway (LCP) or use of syringe drivers. When nursing staff members were asked about the type of palliative care training they would like to receive, there were requests for general training in palliative care, training in how to use medications, tailored training in the use of the LCP, and additional training in communication skills, breaking bad news and bereavement counselling. When medical staff was asked for details about their previous palliative care training, the majority (69%) reported that they had received specific training in palliative care within the previous 5 years. A significant proportion reported that they had received their training as part of their undergraduate degree. Proportionally fewer had received general palliative care training post registration or had experience working in a specialist palliative care setting. Very few mentioned specific training in medication or symptom management, use of the LCP or in communication skills. When asked about additional palliative care training they would find useful, the most common response was for training in medications, followed by general training in palliative care and training in the LCP. When asked to rate the quality of care in their ward, nursing and medical staff gave scores that averaged 8 (ie, 1 being poor and 10 being excellent); when asked to rate care within the hospital, medical and nursing staff rated the quality of care more highly (see table 2). DISCUSSION The need to increase the numbers of health professionals involved in palliative and end-of-life care has become a priority of palliative care policies across the developed world and hospitals will play an increasingly prominent role in providing that care.10 The majority of palliative care in the hospital setting is provided by ‘generalist’ palliative care providers, that is clinicians who do not have specialist training in palliative care, but who routinely manage patients at the end-of-life. In the UK, recent policy has highlighted the importance of training and education for generalist providers if they are to provide effective palliative care.9 However, difficulties incorporating palliative Table 2 Quality of palliative care rating
On a scale of 1–10* how would you rate the quality of palliative care in this ward? On a scale of 1–10* how would you rate the quality of palliative care in this hospital? *One being very poor, 10 being excellent.
Nursing staff
Medical staff
Mean=8.0 SD=1.5 Mean=9.8 SD=1.8
Mean=8.0 SD=1.9 Mean=SD=9.4 SD=1.8
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Education care into a generalist workload have been reported, as has defining the role of palliative care outside the specialist setting.1 2 A recent study by Gott et al11 reported significant challenges in generalist working in England and New Zealand. Difficulties with defining the nature and limits of generalist palliative care, as well as negotiating partnership working were reported; these reveal a significant gap between palliative care provision as enshrined in policy and the reality reported by frontline staff.11 Similarly, findings reported here show that various barriers exist to the provision and management of palliative care in the hospital setting, not least a need for more education and training. Participants felt that they did not always feel adequately prepared to conduct very sensitive discussions around prognosis and goals of care with patients and their families and two-thirds of our sample expressed a need for additional training in palliative care. In a recently published review, education and training were identified as important facilitators of collaborative working within the palliative care workforce, with many studies identifying education for generalists as a particular priority.12 Examples of successful education models for generalists included study days for care home staff,13 practice-based education and decision-making support for GPs,14 and educational inductions for palliative care partnership models involving GPs and practice nurses.15 One study reported shared learning practices involving specialists and generalists; as part of the evolution of joint working between heart failure and specialist palliative care staff, heart failure nurses attended formal education events organised by specialist palliative care services and vice versa, which was successful in facilitating shared learning.16 Shared teaching can demonstrate core skills needed in the delivery of care such as negotiation, clarification, context setting and evaluation, drawing upon ‘real life’ case studies from clinical practice.17 Similarly, in terms of diffusing education and training into practice, there is evidence that using digital media learning can enhance understanding and application of theory to practice. However, the use of online learning in palliative care should be matched against the need to practice skills, particularly in relation to sensitive communication and interprofessional interactions.17 Our data suggest that nursing and medical staff in the hospital setting view providing palliative care as part of their role. While traditionally acute hospitals have been seen as places where people go to be ‘cured’, ensuring people have a ‘good death’ is now a crucial part of their remit. It could be suggested that viewing of death as a ‘failure’ is largely behind the problem of missed opportunities for communication and discussion in advance of the dying phase. The outcome is that often crisis driven decision-making pervades the care of the individuals at the end-of-life and wider service delivery.18 It is clear that nurses, in similar ways to doctors, tend to feel unprepared for situations which require
them to respond to questions and discussions about death and dying.19 If positive transitions to palliative care approaches are to occur, clarity about when the end-of-life is near is required. Christakis20 argues that a re-emphasis on prognostication—which he defines as the process of ‘foretelling’ that is, forming an expert opinion about the possible trajectory of an illness and then using excellent communication skills to discuss this with the individual concerned and their family—is vital if care and treatment options are to be realised and better end-of-life care achieved. Uncertainty in prognostication, however, is just one issue affecting communication in the whole arena of death, dying and bereavement; ‘getting it right’ in these sensitive areas remains a considerable challenge. As our previous research, and the wider literature, has shown,1–8 10–15 while education and training is important, it is only part of the picture. Effecting clinician behaviour change is highly complex. Evidence has suggested that education alone may be insufficient to effect culture change among health professionals21 so initiatives that more effectively moderate attitudes and behaviour need to be explored. Participants in this study felt that the use of care pathways was important in improving the quality of care, particularly with respect to recognising the point of transition to a palliative care approach. However, the relationship between the use of ‘tools’ and standardised protocols and quality palliative care has being identified as in need of further examination.21 Rycroft-Malone draws upon a wide range of practical and methodological approaches and offers a useful practical tool to aid those involved in implementing and evaluating the impact of interventions within complex healthcare environments.22 Undoubtedly, more work is required to examine and clarify the interplay of setting, pervading culture, type of health professional and nature of any educational intervention in order to effect sustained behavioural change.23 CONCLUSION There is a clear need to develop and implement educational interventions to support generalist palliative care providers who work in acute hospital settings deliver improvements in the quality of palliative care, and in initiating transitions to palliative care. Support for staff to do this needs to encompass not only education and training for ‘generalist’ palliative care providers tailored specifically to the unique nature of acute hospital settings, but also a critical consideration of how to address the further significant barriers of the unique ‘cure orientated’ culture of acute hospital settings. Ensuring this happens will require a significant culture change within the acute hospital setting and there is an urgent need to commit resources to education and training initiatives that support clinicians in this regard. In the absence of concerted
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Education efforts to effect change, patients and their families will continue to be denied opportunities to make decisions about one of the most critical periods in life. LIMITATIONS The study sites were both in the north of England and while they were selected because they serve sociodemographically distinct populations and due to funding and resource issues, this is a limitation of the study. Acknowledgements We would like to thank all the staff
who participated in the research, and all members of the research team who undertook the census data collection. We would like to acknowledge members of the project steering group. Contributors MG and CI are co-principal investigators
and designed the study. CI wrote the first draft. CG undertook data collection, contributed to the analysis and revised later drafts of the paper. JS is a co-investigator for the project and revised later drafts of the paper. NR revised later drafts of the paper. Funding This project was commissioned by the NIHR Service Delivery and Organisation (NIHR SDO) programme under the management of the National Institute for Health Research Evaluations, Trials and Studies Coordinating Centre (NETSCC) based at the University of Southampton. From January 2012, the NIHR SDO programme merged with the NIHR Health Services Research (NIHR HSR) programme to establish the new NIHR Health Services and Delivery Research (NIHR HS&DR) programme. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR HS&DR programme, NIHR, NHS or the Department of Health. Competing interests None. Ethics approval This study was approved by the
Sheffield research ethics committee and the Nottingham 1 Research Ethics Committee. Research Governance approval was granted by the relevant NHS Trusts. Provenance and peer review Not commissioned; externally peer reviewed.
REFERENCES 1 Boyd K, Murray SA. Recognising and managing key transitions in end of life care. BMJ 2010;341:c4683. 2 Gott M, Ingleton C, Bennett M, et al. Transitions to palliative care in acute hospitals in England: qualitative study. BMJ 2011;1:42–8. 3 Gardiner C, Gott M, Ingleton C, et al. Extent of palliative care need in the acute hospital setting: a survey of two acute hospitals in the UK. Pall Med 2012;27:76–83. 4 Gardiner C, Cobb M, Gott M, et al. Barriers to the provision of palliative care for older people in acute hospitals. Age Ageing 2011;40:233–8.
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5 Gott M, Ahmedzai S, Wood C. How many inpatients at an acute hospital have palliative care needs? Comparing the perspectives of medical and nursing staff. Palliat Med 2001;15:451–60. 6 Gardiner C, Gott M, Ingleton C, et al. Exploring the transition from curative care to palliative care: a systematic review of the literature. BMJ Support Palliat Care 2011;1:56–63. 7 Department of Health. End of life care strategy—promoting high quality care for all adults at the end of life. London: DOH, 2008. 8 Department of Health. The route to success in end of life care— achieving quality in acute hospitals. London: National End of Life Care Programme, 2010. http://www.endoflifecareforadults.nhs.uk/ publications/route-to-success-acute-hospitals (accessed 2 Jun 2012). 9 Hughes-Hallett T, Craft A, Davies C. Creating a fair and transparent funding system; the final report of the palliative care funding review. London: The Palliative Care Funding Review, 2011. 10 Gomes B, Cohen J, Deliens L, et al. International trends in circumstances of death and dying amongst older people. In: Gott M, Ingleton C. eds. Living with ageing and dying: palliative and end of life care for older people. Oxford: OUP, 2011: 3–18. 11. 11 Gott M, Seymour J, Ingleton C, et al. ‘That’s part of everybody’s job’: the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care. Pall Med 2012;26:232–241. 12 Gardiner C, Gott M, Ingleton C. Factors supporting good partnership working between generalists and specialists palliative care services: an integrative review. Br Journal of GP 2012;598:353–62. 13 Heals D. Development and implementation of a palliative care link –nurse programme in care homes. Int J Pallait Nurs 2008;14:604–9. 14 Marshall D, Howell D, Brazil K, et al. Enhancing family physician capacity to deliver quality palliative home care: an end of life shared care model. Can Fam Physician 2008;54:1703. 15 McKinlay E, McBain L. Evaluation of the Palliative Care Partnership: a New Zealand solution to the provision of integrated palliative care. NZ Med J 2007;120:U245. 16 Daley A, Matthews C, Williams A. Heart failure and palliative care services working in partnership: report of a new model of care. Pallait Med 2006;20:593–601. 17 Gamondi C, Larkin P, Payne S. (in preparation). Enhancing the palliative care approach by defining inter-disciplinary core competencies in palliative care: recommendations from the EAPC. Milan: European Association of Palliative Care, 2012. 18 Seymour J, Gott M. The challenges of health technology for ageing and dying. In: Gott M, Ingleton C. eds. Living with ageing and dying: palliative and end of life care for older people. Chapter 4. Oxford: Oxford University Press, 2011: 42–52. 19 Albisson L, Strang P. A palliative care approach to existential issues and death in end-stage dementia care. J Palliat Care 2002;18:168–74. 20 Christakis N. Death foretold: prophecy and prognosis in medical care. Chicago, IL: University of Chicago Press, 1999. 21 Chan R, Webster J. End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database Syst Rev 2010;(1). Art. No: CD008006. 22 Rycroft-Malone J. Implementing evidence based practice in the reality of clinical practice. Worldview Evid Based Nurs 2012;9:1. 23 May C, Marit F, Dowrick T, et al. Process evaluation for complex interventions in primary care: understanding trials using the normalisation model. BMC Family Practice 2007;8:42–51.
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Exploring education and training needs among the palliative care workforce Christine Ingleton, Clare Gardiner, Jane E Seymour, Naomi Richards and Merryn Gott BMJ Support Palliat Care 2013 3: 207-212 originally published online February 13, 2013
doi: 10.1136/bmjspcare-2012-000233 Updated information and services can be found at: http://spcare.bmj.com/content/3/2/207
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Education
Exploring education and training needs among the palliative care workforce Christine Ingleton,1 Clare Gardiner,2 Jane E Seymour,3 Naomi Richards,4 Merryn Gott5
1
School of Nursing and Midwifery, The University of Sheffield, Sheffield, UK 2 School of Health and Related Research (ScHARR), The University of Sheffield, Sheffield, UK 3 School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Queen’s Medical Centre, Nottingham, UK 4 School of Nursing and Midwifery, The University of Sheffield, Sheffield, UK 5 School of Nursing, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand Correspondence to Professor Christine Ingleton, School of Nursing and Midwifery, The University of Sheffield, 387 Glossop Road, Sheffield S10 2HQ, UK; [email protected] Received 6 March 2012 Revised 27 November 2012 Accepted 2 January 2013 Published Online First 13 February 2013
To cite: Ingleton C, Gardiner C, Seymour JE, et al. BMJ Supportive & Palliative Care 2013;3:207–212.
ABSTRACT Objectives Education and training are seen as ‘absolutely essential parts of providing palliative care’. As part of a larger study to explore the extent of palliative care need in two acute hospital settings, we report the perceptions of healthcare professionals regarding their training and educational needs. Methods In Phase 1, we undertook eight focus groups and four individual interviews with 58 health professionals from general practice, specialist palliative care and acute hospitals, exploring perceived education and training priorities. Phase 2 of the study involved a survey of palliative care need at two hospitals in England. Hospital based doctors and nurses completed questionnaires to identify patients with palliative care needs and to respond to questions about their training and education needs. Results Various barriers exist to the provision and management of palliative care, not least a need for more education and training. Focus group participants felt they were not adequately trained to address prognosis and goals of care with patients and their families. In Phase 2 of the study, 171 nursing staff and 81 medical staff completed the questionnaire and two-thirds of our sample felt they required additional training in palliative care. Conclusions Although important, the use of standardised care pathways alongside the provision of education and training for healthcare professionals alone will not improve quality of care. More work is needed to examine and clarify the interplay of: behaviour change, setting, the ‘cure’ orientation approach, type of health professional and nature of any educational intervention in order to effect sustained behavioural change.
INTRODUCTION The identification of patients with palliative care needs presents a recognised challenge.1–3 Healthcare professionals have reported differing understandings of what
Ingleton C, et al. BMJ Supportive & Palliative Care 2013;3:207–212. doi:10.1136/bmjspcare-2012-000233
constitutes a ‘palliative care’ patient 1 4 and have reported difficulties with recognising when a palliative care approach may be appropriate.2 This was evident in a study conducted in an English acute hospital in 2001 which aimed to identify the proportion of adult (over 18 years) inpatients with palliative care needs according to medical and nursing staff.5 While 23% of the inpatient population were identified as having palliative care needs, there was a lack of concurrence between medical and nursing staff regarding which patients had palliative care needs.5 A recent systematic review identified a lack of validated criteria for identifying patients who would benefit from a transition to a palliative care approach, and highlighted that inconsistencies in the identification of patients with palliative care needs may have a negative impact on care delivery.6 There are significant implications of a lack of consensus in identifying which patients have palliative care needs. Poor continuity of care, inadequate service provision and support, and excess economic cost have all been suggested as consequences of inconsistent identification of patients with palliative care needs.2 4 In response to calls for improved identification of patients nearing the end-of-life, policymakers and researchers have called for improvements in training and education for all health professionals who provide care to patients at the end-of-life. Virtually all healthcare practitioners who come into contact with patients require some knowledge of the unique needs of patients facing death, and their own responses to these needs. Recent UK policy recommends that health professionals should be educated and trained to identify patients approaching the end-of-life, and to recognise when patients are dying.7 The 207
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Education End of Life Strategy for England has acknowledged an expanded role for ‘generalist’ palliative care providers as the backbone of the palliative care workforce, and has highlighted palliative care provision as core to the role of all health professionals.8 Key to appropriate palliative care management is ensuring a well trained and appropriately equipped workforce. The recently published Palliative Care Funding Review recommends that education and training are seen as ‘absolutely essential parts of providing palliative care’.9 A report by the National End of Life Care Programme also highlights that significant end of life care educational needs remain for medical and nursing staff in primary care.7 Drawing on a National Institute for Health Research funded project which explored transitions to palliative care in acute hospitals, we report here the perspectives of healthcare professionals regarding their perceived education and training needs and priorities. While we acknowledge that the concept of ‘transition’ to palliative care is not widely held in the acute hospital setting, within this context a transition is defined as a change of focus in the goals of a patient’s care from ‘active treatment,’ where the focus is solely on cure or management of a chronic disease, to a ‘palliative care’ approach, where consideration is given to maximising quality of life. Sample and methods
In Phase 1 of the study we conducted and tape-recorded eight focus groups and four individual interviews with 58 health professionals involved in palliative care provision in either secondary or primary care settings, in two contrasting areas of England. More specifically, four focus groups were held at General Practices (n=28), and four focus groups (n=26) and four interviews (n=4) were held in acute hospitals and hospices. Individual interviews were held with Consultant Geriatricians who wanted to participate in the study, but for practical reasons could not attend a focus group. This phase aimed to explore barriers to palliative care provision within acute hospitals. Data were coded using NVIVO and analysed thematically. Analysis incorporated key elements of a modified grounded theory approach. Three researchers read the transcripts individually (MG, CG and CI), and independently noted down the core themes that emerged. Notes were cross-compared and any discrepancies discussed, although the aim was not to achieve complete consensus as the researchers brought unique perspectives and interests to their analysis. Detailed methods have been reported elsewhere.2 Phase 2 of the study comprised a questionnaire survey of hospital inpatients at two acute hospitals in England. Although both are in the north of England, these settings were selected because they serve sociodemographically distinct populations. Royal Lancaster Infirmary serves a predominantly white Caucasian semi-rural/ remote rural population. By contrast, Sheffield 208
Northern General Hospital services a largely urban, more economically disadvantaged and ethically diverse area. The surveys were undertaken at Sheffield’s Northern General Hospital in May 2010 and at Lancaster Royal Infirmary in November 2010. Each ward was visited by a team of two researchers at some point during a 2 week survey period. Inclusion criteria were: patients aged 18 years and over resident in the ward at 09:00 on the day the ward was surveyed. Non-English speaking patients and deaf patients were excluded due to a lack of translation facilities. As part of this survey, doctors and nurses were asked to complete questionnaires identifying inpatients with palliative care needs according to a standardised definition (Canadian Pall Care Association, 1997);i and stating the reason for admission and current approach to care. For patients with identified palliative care needs, further questions were asked regarding: appropriateness of admission; whether the prognosis and care approach had been discussed with the patient; and whether the health professional felt they had sufficient training and education in palliative care. Survey data were analysed with the aid of SPSS to produce descriptive statistics, alongside free text comments. All data were collected by a team of 30 experienced researchers; data collected from hospital case notes were collected by researchers with a clinical background in medicine or nursing. It was estimated that 30 researchers were needed as data were collected from over 1500 patients and over 300 staff within a 2 week census period. Details regarding the recruitment, training and support of research staff are reported elsewhere.2 All researchers undertook indepth training in survey methodology and data collection prior to the study commencing. As the research team comprised 30 members, part of the training programme involved issues relating to interrater reliability, establishing levels of agreement and reaching consensus decisions. During the two hospital surveys, 171 nursing staff and 80 medical staff across all wards completed questionnaires, administered by the researchers, about their experience of delivering palliative care and whether they perceived that they could benefit from further training. All data were recorded onto anonymised paper proformas and were subsequently transferred onto an SPSS database for data cleaning. Descriptive analyses were used to describe the data and Cohen’s κ measure of chance corrected agreement was used to assess agreement between medical staff, nursing staff, and Gold Standards Framework (GSF) criteria regarding identification of patients with palliative care needs.
i
‘Palliative care is the combination of active and compassionate therapies intended to comfort and support individuals and families who are living with or dying from a progressive life threatening illness’ (Canadian Palliative Care Association, 1997).
Ingleton C, et al. BMJ Supportive & Palliative Care 2013;3:207–212. doi:10.1136/bmjspcare-2012-000233
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Education The study was approved by the Sheffield research ethics committee and the Nottingham 1 Research Ethics Committee. Research Governance approval was granted by the relevant NHS Trusts. Findings Focus groups and individual interviews
Findings from focus groups/interview data revealed that various barriers exist to the provision and management of palliative care in acute hospitals. These included: difficulty of ‘standing back’ in an acute hospital situation; professional hierarchies that limited the ability of junior medical and nursing staff to input decisions on care; and poor communication. These data have been reported elsewhere.2 Here we present data from a cross-cutting theme: education and training. Many of the participants, particularly doctors and nurses in non-specialist settings, felt they were not adequately trained or confident in administering analgesics. Neither did they feel they had the requisite communication skills to engage in sensitive discussions regarding prognosis and goals of care with patients and their families: It’s about the experience of the practitioners isn’t it and the confidence to be able to deal with certain situations for example pain management. If you’re not used to dealing with certain analgesics, with morphine, you’re not going to feel confident about morphine, or an alternative to morphine if the pain’s not controlled or if there are too many side effects, so I think part of it is the experience of the practitioner that is a barrier. Partly I think it’s something to do with psychological approach as well. Are you prepared to think like this, are you prepared to imagine what’s going to happen in the process of managing these symptoms because that’s quite hard. (Primary care, general practitioner) I don’t think there’s enough staff trained in palliative care on the acute wards You might have the palliative care nurse going in but they [general nurses] will call the palliative care nurse in for advice. I think the general nurses on the ward, especially if a lot of them are still only training, you could have an acute medical ward, an acute surgical ward, they don’t have the skills in communication or palliation to manage them properly. I’m not saying that the specialist nurses don’t but on the 24 hour basis that they’re different. (Primary care, general practitioner)
The use of a care pathway, at an appropriate time, was identified by some participants, from specialist and non-specialist settings as a way of recognising the point of transition to palliative care with the potential to improve the quality of care: I think the end-of-life care pathway has been the key really in its widespread implementation................, but it’s making sure that people use that at an appropriate time. That’s the key really, it’s making sure that people
implement it and don’t leave it too late and I think sometimes it’s not an easy decision to decide when somebody is actually in the dying phases and I think it’s key in terms of training that we make sure that we instigate and use those end-of-life pathways when they’re appropriate and I think that needs more senior involvement really. (Registrar geriatrician, secondary care)
However, it was acknowledged by participants across the sample group, that education and training alone were not sufficient for the delivery of quality palliative care, and that changing attitudes and beliefs were key to effecting sustained behavioural changes: Having been in a hospital, in medicine, for so many years I’ve seen education … a lot of money has been poured into education and training and lot of things are happening and I accept it is an important part. In some areas I’ve seen education making a change. I don’t think that education alone is enough because you’ve done so much training to different groups and yet you see no real improvement in practice so therefore for me the important part is the personal attitude. If you don’t have a willingness, a will to deliver something as a person-centred approach or something you’re not going to do it if you don’t change your attitude. No matter how many lectures you attend, how much training you go to but it is, I think, up to individuals that they have the desire to deliver quality care. (Secondary care, palliative medicine consultant).
The need to provide palliative care to those dying with non-malignant chronic diseases was acknowledged by participants. Alongside this was recognition that there was limited confidence among some healthcare teams in the recognition, assessment and management of such individuals. The nurse quoted below struggled with the identification and management of dementia: And the doctors don’t have the specialism in their teams either to deal with that. We would love to do it ( provide care) to but again I don’t think I personally would know how to recognise somebody with dementia. Obviously you’d look for signs from other diseases but it’s sort of coming to the end....dementia and I didn’t, certainly at first when I first started doing it, I wasn’t aware. You know you sort of think there does come a time when they stop feeding and stop eating and drinking but you think oh you can’t do that, there’s nothing, physically you don’t look as bad as you should do. It’s quite hard I think. I think we need additional training if we’re going to take that on but I do think it’s something that should be done. (Secondary care, nurse) Survey findings
During the two hospital surveys, 171 nursing staff and 80 medical staff across all wards completed questionnaires, administered by the researchers, about their experience of delivering palliative care and whether they perceived that they could benefit from further
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Education training. They were also asked to rate the perceived quality of care in their respective wards and within their hospital. Of those who completed the questionnaire, 97% of nursing staff and 95% of medical staff recognised that providing palliative care was part of their role (See table 1). Sixty-nine per cent of nurses and 63% of doctors said they felt they required more specific training in palliative care and 95% of nurses and 88% of doctors confirmed that they would take up additional training in palliative care if it were offered to them. When asked for details about their previous palliative care training, 49% of nursing staff reported they had received no specific training in palliative care within the previous 5 years (table 1). For those who Table 1 Palliative care education and training needs for nursing (n=171) and medical (n=80) staff Nursing staff: previous training received No prior training in palliative care received within previous 5 years General study days LCP University course Previously worked in specialist palliative care setting Syringe driver Communication skills training Other No response Nursing staff: training would like to receive General training in palliative care Use of medication LCP Communication skills/breaking bad news/bereavement counselling Psychological/emotional/spiritual issues When to initiate palliative care None required/No response Medical staff: previous training received As part of undergraduate training General training post registration Previously worked in specialist palliative care setting Medication/symptom management LCP Communication skills training No response Medical staff: training would like to receive Medications General training LCP Initiating palliative care and who needs it What services exist and are available locally Communication None required/No response LCP, Liverpool Care Pathway.
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n
%
84
49.1
25 18 17 12 4 1 6 4
14.6 10.5 9.9 7.0 2.3 0.6 3.5
39 27 15 11
22.8 15.8 8.8 6.4
4 3 72
2.3 1.8 42.1
28 11 10 2 2 1 19
35.0 13.8 12.5 2.5 2.5 1.2 23.8
18 14 7 4 3 1 26
22.5 17.5 8.8 5.0 3.8 1.3 32.5
had received some training, this had occurred on general study days, during their university course, or involved specific training related to the implementation of the Liverpool Care Pathway (LCP) or use of syringe drivers. When nursing staff members were asked about the type of palliative care training they would like to receive, there were requests for general training in palliative care, training in how to use medications, tailored training in the use of the LCP, and additional training in communication skills, breaking bad news and bereavement counselling. When medical staff was asked for details about their previous palliative care training, the majority (69%) reported that they had received specific training in palliative care within the previous 5 years. A significant proportion reported that they had received their training as part of their undergraduate degree. Proportionally fewer had received general palliative care training post registration or had experience working in a specialist palliative care setting. Very few mentioned specific training in medication or symptom management, use of the LCP or in communication skills. When asked about additional palliative care training they would find useful, the most common response was for training in medications, followed by general training in palliative care and training in the LCP. When asked to rate the quality of care in their ward, nursing and medical staff gave scores that averaged 8 (ie, 1 being poor and 10 being excellent); when asked to rate care within the hospital, medical and nursing staff rated the quality of care more highly (see table 2). DISCUSSION The need to increase the numbers of health professionals involved in palliative and end-of-life care has become a priority of palliative care policies across the developed world and hospitals will play an increasingly prominent role in providing that care.10 The majority of palliative care in the hospital setting is provided by ‘generalist’ palliative care providers, that is clinicians who do not have specialist training in palliative care, but who routinely manage patients at the end-of-life. In the UK, recent policy has highlighted the importance of training and education for generalist providers if they are to provide effective palliative care.9 However, difficulties incorporating palliative Table 2 Quality of palliative care rating
On a scale of 1–10* how would you rate the quality of palliative care in this ward? On a scale of 1–10* how would you rate the quality of palliative care in this hospital? *One being very poor, 10 being excellent.
Nursing staff
Medical staff
Mean=8.0 SD=1.5 Mean=9.8 SD=1.8
Mean=8.0 SD=1.9 Mean=SD=9.4 SD=1.8
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Education care into a generalist workload have been reported, as has defining the role of palliative care outside the specialist setting.1 2 A recent study by Gott et al11 reported significant challenges in generalist working in England and New Zealand. Difficulties with defining the nature and limits of generalist palliative care, as well as negotiating partnership working were reported; these reveal a significant gap between palliative care provision as enshrined in policy and the reality reported by frontline staff.11 Similarly, findings reported here show that various barriers exist to the provision and management of palliative care in the hospital setting, not least a need for more education and training. Participants felt that they did not always feel adequately prepared to conduct very sensitive discussions around prognosis and goals of care with patients and their families and two-thirds of our sample expressed a need for additional training in palliative care. In a recently published review, education and training were identified as important facilitators of collaborative working within the palliative care workforce, with many studies identifying education for generalists as a particular priority.12 Examples of successful education models for generalists included study days for care home staff,13 practice-based education and decision-making support for GPs,14 and educational inductions for palliative care partnership models involving GPs and practice nurses.15 One study reported shared learning practices involving specialists and generalists; as part of the evolution of joint working between heart failure and specialist palliative care staff, heart failure nurses attended formal education events organised by specialist palliative care services and vice versa, which was successful in facilitating shared learning.16 Shared teaching can demonstrate core skills needed in the delivery of care such as negotiation, clarification, context setting and evaluation, drawing upon ‘real life’ case studies from clinical practice.17 Similarly, in terms of diffusing education and training into practice, there is evidence that using digital media learning can enhance understanding and application of theory to practice. However, the use of online learning in palliative care should be matched against the need to practice skills, particularly in relation to sensitive communication and interprofessional interactions.17 Our data suggest that nursing and medical staff in the hospital setting view providing palliative care as part of their role. While traditionally acute hospitals have been seen as places where people go to be ‘cured’, ensuring people have a ‘good death’ is now a crucial part of their remit. It could be suggested that viewing of death as a ‘failure’ is largely behind the problem of missed opportunities for communication and discussion in advance of the dying phase. The outcome is that often crisis driven decision-making pervades the care of the individuals at the end-of-life and wider service delivery.18 It is clear that nurses, in similar ways to doctors, tend to feel unprepared for situations which require
them to respond to questions and discussions about death and dying.19 If positive transitions to palliative care approaches are to occur, clarity about when the end-of-life is near is required. Christakis20 argues that a re-emphasis on prognostication—which he defines as the process of ‘foretelling’ that is, forming an expert opinion about the possible trajectory of an illness and then using excellent communication skills to discuss this with the individual concerned and their family—is vital if care and treatment options are to be realised and better end-of-life care achieved. Uncertainty in prognostication, however, is just one issue affecting communication in the whole arena of death, dying and bereavement; ‘getting it right’ in these sensitive areas remains a considerable challenge. As our previous research, and the wider literature, has shown,1–8 10–15 while education and training is important, it is only part of the picture. Effecting clinician behaviour change is highly complex. Evidence has suggested that education alone may be insufficient to effect culture change among health professionals21 so initiatives that more effectively moderate attitudes and behaviour need to be explored. Participants in this study felt that the use of care pathways was important in improving the quality of care, particularly with respect to recognising the point of transition to a palliative care approach. However, the relationship between the use of ‘tools’ and standardised protocols and quality palliative care has being identified as in need of further examination.21 Rycroft-Malone draws upon a wide range of practical and methodological approaches and offers a useful practical tool to aid those involved in implementing and evaluating the impact of interventions within complex healthcare environments.22 Undoubtedly, more work is required to examine and clarify the interplay of setting, pervading culture, type of health professional and nature of any educational intervention in order to effect sustained behavioural change.23 CONCLUSION There is a clear need to develop and implement educational interventions to support generalist palliative care providers who work in acute hospital settings deliver improvements in the quality of palliative care, and in initiating transitions to palliative care. Support for staff to do this needs to encompass not only education and training for ‘generalist’ palliative care providers tailored specifically to the unique nature of acute hospital settings, but also a critical consideration of how to address the further significant barriers of the unique ‘cure orientated’ culture of acute hospital settings. Ensuring this happens will require a significant culture change within the acute hospital setting and there is an urgent need to commit resources to education and training initiatives that support clinicians in this regard. In the absence of concerted
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Education efforts to effect change, patients and their families will continue to be denied opportunities to make decisions about one of the most critical periods in life. LIMITATIONS The study sites were both in the north of England and while they were selected because they serve sociodemographically distinct populations and due to funding and resource issues, this is a limitation of the study. Acknowledgements We would like to thank all the staff
who participated in the research, and all members of the research team who undertook the census data collection. We would like to acknowledge members of the project steering group. Contributors MG and CI are co-principal investigators
and designed the study. CI wrote the first draft. CG undertook data collection, contributed to the analysis and revised later drafts of the paper. JS is a co-investigator for the project and revised later drafts of the paper. NR revised later drafts of the paper. Funding This project was commissioned by the NIHR Service Delivery and Organisation (NIHR SDO) programme under the management of the National Institute for Health Research Evaluations, Trials and Studies Coordinating Centre (NETSCC) based at the University of Southampton. From January 2012, the NIHR SDO programme merged with the NIHR Health Services Research (NIHR HSR) programme to establish the new NIHR Health Services and Delivery Research (NIHR HS&DR) programme. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR HS&DR programme, NIHR, NHS or the Department of Health. Competing interests None. Ethics approval This study was approved by the
Sheffield research ethics committee and the Nottingham 1 Research Ethics Committee. Research Governance approval was granted by the relevant NHS Trusts. Provenance and peer review Not commissioned; externally peer reviewed.
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Ingleton C, et al. BMJ Supportive & Palliative Care 2013;3:207–212. doi:10.1136/bmjspcare-2012-000233
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Exploring education and training needs among the palliative care workforce Christine Ingleton, Clare Gardiner, Jane E Seymour, Naomi Richards and Merryn Gott BMJ Support Palliat Care 2013 3: 207-212 originally published online February 13, 2013
doi: 10.1136/bmjspcare-2012-000233 Updated information and services can be found at: http://spcare.bmj.com/content/3/2/207
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