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Death, dying and caring: exploring the student nurse experience of palliative and end-of-life education

08 June 2023
Volume 32 · Issue 11

Abstract

Background:

Undergraduate education and training are fundamental in preparing student nurses for working in palliative and end-of-life care.

Aim:

This article explores the experiences of student nurses in their palliative and end-of-life undergraduate nurse education.

Methodology:

Sandelowski and Barroso's (2007) framework for undertaking a metasynthesis was used. Initial database searches returned 60 articles of interest. Re-reading the articles in the context of the research question identified 10 studies that met the inclusion criteria. Four key themes emerged.

Findings:

Student nurses voiced concerns regarding their feelings of unpreparedness, and lack of confidence and knowledge when dealing with the complexities of palliative and end-of-life care. Student nurses called for more training and education in palliative and end-of-life care.

Conclusion:

Flexible nursing curricula responsive to the needs of student nurses and the changing landscape of healthcare provision, including care to ensure a good death experience, should be prioritised at undergraduate level.

The World Health Organization (WHO) has estimated that approximately 40 million people require palliative care annually (WHO, 2020). The concepts of a ‘good death for dying patients’ or ‘successful dying’ are multifactorial, and no clear definition is found in the literature. Meier et al (2016) recommended further examination of what these concepts mean from the perspectives and needs of patients and their families in tandem with those of health professionals. The WHO recommended that palliative care should be a component of integrated treatment throughout the life course (WHO, 2014).

Palliative and end-of-life care education for health professionals is essential to meet the needs of patients and their families and to ensure the provision of safe, high-quality patient-centred care (Eriksson et al, 2015; Fadhil et al, 2017). To address this, the Erasmus+ Cooperation for Innovation and the Exchange of Good Practices produced the Palliative Care Standardized Curriculum – Translating International Recommendations into Undergraduate Palliative Care Curriculum (EDUPALL) project. This undergraduate Palliative Care Curriculum is credited with three European Credit Transfer System (ECTS) points for undergraduate medical student education and is based on the European Association of Palliative Care (EAPC) recommendations (Mason et al, 2020). The key elements recommended by EAPC for inclusion in the curriculum are the basis of palliative care: pain and symptom management; psychosocial and spiritual aspects; ethical and legal issues; communication and self-reflection (Mosoiu et al, 2019; Mason et al, 2020).

The Irish National Cancer Registry has suggested that the number of cases of cancer could double by 2045 if current rates continue into the future (National Cancer Registry Ireland, 2019). A number of national frameworks and programmes have recommended education and training for health and social care professionals to equip them with the competencies, knowledge and skills to meet the individualised palliative care needs of people and their families to ensure every person with a life-limiting condition has access to individualised and quality end-of-life care. These frameworks and programmes include the Irish Palliative Care Competence Framework 2014 (Ryan et al, 2014); the Health Service Executive (HSE) Three Year Development Framework (2017-2019) (HSE Primary Care Division, 2017) and The Adult Palliative Care Services Model of Care for Ireland (National Clinical Programme for Palliative Care, 2019).

In 2012, the Irish Nursing and Midwifery Undergraduate Degree Programmes Review concluded that a focus on end-of-life care in diverse settings should be embedded within undergraduate nursing curricula (Department of Health, 2012). However, sparse direction on the implementation of such a focus within the different divisions of the nursing register was given in the review. Many Irish research institutes and organisations, such as the All Ireland Institute for Hospice and Palliative Care (Connolly and Charnley, 2015) provide leadership and evidence-based recommendations for the development of innovative curricula.

Thus, there is a clear need to improve palliative and end-of-life education in undergraduate nursing programmes to equip student nurses with clinical competencies and knowledge in this field (Ferrell et al, 2016; Zolot, 2016). This article uses the metasynthesis methodology to explore nursing students' experiences of palliative and end-of-life education in current undergraduate nursing curricula to prepare them to provide individualised palliative and end-of-life care.

Methodology

Metasynthesis is a systematic and comprehensive scientific inquiry that takes and integrates all the findings across a set of reports, resulting in a complete description of the experience under investigation. This article uses the stages developed by Sandelowski and Barroso (2007): research question formulation; studies retrieval; studies appraisal; undertaking a metasummary and a metasynthesis.

Formulating the research question

The research question that guided this study was ‘What are the experiences of the student nurse relating to palliative and end-of-life care within the undergraduate nursing programmes?’ There is diversity in the concept of a student nurse internationally due to differences in terminology, such as undergraduate nursing student or pre-registration student, the latter being attached to a university for their training. According to the Medical Dictionary for the Health Professions and Nursing (2012) a student nurse is matriculated in a nursing programme, which may be a diploma, associate degree or baccalaureate programme. This article uses that definition.

Retrieval of research studies

The validity of a metasynthesis is dependent on the comprehensive retrieval of studies. Table 1 details the inclusion criteria used for the metasynthesis and the date restriction ensured relevance to current undergraduate nursing curricula. Literature searches were undertaken in the following academic databases: Academic Search Complete, PubMed, CINAHL, Wiley Online Library and PsycINFO, using the key words: Student Nurses AND Nursing Students, End-of-Life AND Palliative Care, Undergraduate Curriculum AND Qualitative Study AND Research. Initially, 60 articles of interest were identified. Reading and re-reading these articles in the context of the research question identified 10 articles meeting the inclusion criteria (Huang et al, 2010; Adesina et al, 2014; Ballesteros et al, 2014; Edo-Gual et al, 2014; Ek et al, 2014; Hold et al, 2015; Venkatasalu et al, 2015; Bassah et al, 2016; Gillett et al, 2016; Rotter and Braband, 2020).


Table 1. Inclusion criteria for studies
Inclusion criteria
Search method Primary research using a qualitative methodology.Peer reviewed articles
Study focus Exploring the student nurse experience of end-of-life and palliative care education within the undergraduate nursing programme
Publication dates 2010 to 2020
Language English

This study brought together a diverse range of methodological and theoretical perspectives to produce the metasynthesis. In the Sandelowski and Barroso framework (2007) the bias is toward inclusion rather than exclusion of qualitative papers (Sandelowski and Barroso, 2007). None of the included articles were excluded for reasons of quality. Strict adherence to the Sandelowski and Barroso (2007) framework in and of itself makes this an inherently robust review.

Individual and comparative studies appraisal

The individual appraisal judges whether a report satisfies the specified inclusion criteria. A reading guide, developed by the research team, facilitated an initial report appraisal and addressed issues such as the abstract, population characteristics, method and the reviewer's initial appraisal findings. The comparative appraisal allows a summary cross-study tabular display to be developed to highlight key elements from the individual appraisal. The studies included data collected from 392 student nurses by qualitative approaches including focus groups and interviews. The studies were geographically dispersed across many countries: Australia, Cameroon, Spain, Sweden, Taiwan, the UK and the USA.

Qualitative metasummary

The metasummary involved extracting and editing findings from 10 primary qualitative studies while conserving the original researchers' meanings. Initially, the findings were grouped based on similarities, which resulted in 108 extracted findings. Further re-reading and editing identified 41 statements that succinctly captured the overall findings of the 10 studies. This process is necessary to preserve the original context in which statements appeared and are critical precursors for a qualitative metasynthesis.

Findings

Four key themes emerged during the appraisal of the literature:

  • Theme 1: feelings of unpreparedness for palliative care and end-of-life situations
  • Theme 2: breaking bad news
  • Theme 3: dying matters: finally, at peace
  • Theme 4: previous life and work experience and student exposure to death and dying.

Table 2 details the emerging themes and the studies from which they arose.


Table 2. Emerging themes and the studies from which they arose
Theme 1: feelings of unpreparedness for palliative care and end of life situations Huang et al (2010)
Edo-Gual et al (2014)
Hold et al (2015)
Bassah et al (2016)
Gillett et al (2016)
Rotter and Braband (2020)
Theme 2: breaking bad news Adesina et al (2014)
Ballesteros et al (2014)
Edo-Gual et al (2014)
Bassah et al (2016)
Rotter and Braband (2020)
Theme 3: dying matters: finally, at peace Huang et al (2010)
Adesina et al (2014)
Ballesteros et al (2014)
Edo-Gual et al (2014)
Ek et al (2014)
Hold et al (2015)
Theme 4: previous life and work experience and student exposure to death and dying Adesina et al (2014)
Ballesteros et al (2014)
Venkatasalu et al (2015)
Gillett et al (2016)
Rotter and Braband (2020)

Theme 1: feelings of unpreparedness for palliative care and end-of-life situations

Many student nurses reported concerns, felt unprepared, lacked confidence and competence when encountering palliative and end-of-life care interactions in clinical practice (Huang et al, 2010; Edo-Gual et al, 2014; Hold et al, 2015; Bassah et al, 2016; Gillett et al, 2016; Rotter and Braband, 2020).

Student nurses mentioned that responsibilities for identifying palliative care needs in the provision of end-of-life care during sensitive interactions with patients and families was overwhelming for them. One student nurse illuminated this feeling by stating that:

‘Palliative care seems like a grey area with lots of responsibility. It's overwhelming.’

Rotter and Braband, 2020: 198

Student nurses were also cognisant of their experiential limitations when delegated responsibility for patient end-of-life care, as described by one student nurse:

‘So, my big challenge was the issue that I am a student, and it limited me a lot.’

Bassah et al, 2016: 10

Sentiments and discomfort relating to a lack of theoretical and clinical experience to deal with end-of-life situations were described succinctly by this student:

‘She was gone … right then I didn't know what to do and my mind blanked out … I couldn't find a way to react … I froze up …’

Huang et al, 2010: 2285

Therapeutic communication in interactions with patients and their families when providing palliative and end-of-life care is one of the key areas in which student nurses felt they lacked competency. As one student said:

‘Where do you find the words?’

Edo-Gual et al, 2014: 3503

Theme 2: breaking bad news

Student nurses found that their involvement in the process of breaking bad news about the palliative and end-of-life journey to patients and families to be a very emotional experience. Student nurses felt they did not have the competence or confidence to be involved in this process (Adesina et al, 2014; Ballesteros et al, 2014; Edo-Gual et al, 2014; Bassah et al, 2016; Rotter and Braband, 2020).

The student nurses in these studies explained how difficult it was to talk about the palliative and end-of-life journey to patients and families when they felt unprepared for the encounter:

‘What would I say to ease the hurt and pain?’

Adesina et al, 2014: 398

‘It's intimidating I don't want to answer [the] family's questions wrong.’

Rotter and Braband, 2020: 200

Lacking knowledge had emotional significance for students, often resulting in students questioning their own fragility and mortality. Students frequently emphasised the need for education in breaking bad news. One student explained:

‘When you break bad news how do you go about it, where do you find the words? … I think training is very important.’

Edo-Gual et al, 2014: 3503

Theme 3: dying matters: finally, at peace

Student nurses involved in the final stages of a patient dying reported experiencing dread, terror, and ‘a fear within’ (Huang et al, 2010; Adesina et al, 2014; Ballesteros et al, 2014; Edo-Gual et al, 2014; Ek et al, 2014; Hold et al, 2015). This is particularly difficult when a patient expresses existential anguish. One student nurse captured the challenge of caring for such patients:

‘The most disturbing thing was her aura of despair … to see that she was suffering.’

Ek et al, 2014: 513

Despite this discomfort, student nurses realised that it is their duty to prioritise patients and devote themselves to easing the patients' fears as highlighted by this student nurse:

‘They were people before and it's important to let them know that they still matter.’

Hold et al, 2015: 779

Some student nurses expressed the clear perspective that education acts as a buffer to help them gain knowledge and skills to stem fears in these encounters with dying patients. This is particularly evident when experiencing difficult situations, enabling the student nurses to deal with the situation appropriately. More experienced colleagues can also help in such situations. One student nurse said:

‘Being with a qualified member of staff … that they explain it to you with an air of calm … that they help you and say to you, “don't worry, it's not your fault, nor anybody's”.’

Edo-Gual et al, 2014: 3506

Involvement in the dying process led to personal growth and the acquisition of greater knowledge. One student nurse explained how:

‘Being at peace, content … satisfied with what you've done … this helps …’

Edo-Gual et al, 2014: 3506

Theme 4: previous life and work experience and student nurse exposure to death and dying

Student nurses, particularly mature student nurses, with prior exposure to work-related or personal loss reported emotional preparedness and confidence when providing palliative and end-of-life care (Adesina et al, 2014; Ballesteros et al, 2014; Venkatasalu et al, 2015; Gillett et al, 2016; Rotter and Braband 2020).

Having had the experience of coping with grief in their personal or work lives in the past gave them a better understanding of the death and dying process, enabling those student nurses to provide high-quality compassionate care as described by these student nurses:

‘I have experience from a previous job … I feel very prepared for caring for the patient during end-of-life care.’

Rotter and Braband, 2020: 197

‘I have learned what a terminally ill patient goes through in the final moments and how we should care for them and their families.’

Ballesteros et al, 2014: e3

Simulation-based education can also be beneficial in preparing student nurses to deal with expected deaths. However, every death is different and student nurses are conscious that simulation training may not prepare them for every experience they encounter, as this student nurse explained:

‘If it's an expected death, then the simulation probably would help you deal with that. But if you're on a general ward, and somebody just dies and it's not expected, I don't know if there's anything that could help you prepare for that.’

Venkatasalu et al, 2015: 183

Differences in experiences among nursing students across the undergraduate nursing programme have been identified between students from the first to fourth years of education. Furthermore, mature students suggested simulation training in end-of-life care is more beneficial to younger students who may not have personal experience:

‘I think its beneficial to … the younger students who haven't been exposed to what I have been exposed to.’

Venkatasalu et al, 2015: 184

Discussion

Student nurses should reflect on what they want from their undergraduate nursing curriculum to ensure attainment of competence in end-of-life and palliative care (Nicol and Pocock 2020). The findings from this metasynthesis illuminate the gaps in training in undergraduate nursing curricula in the provision of palliative and end-of-life care and the resulting competency shortfalls reported by student nurses in this area.

Undergraduate nursing education provides the foundation for the practice of holistic palliative and end-of-life care (Sekse et al, 2018). However, similar to findings in the wider body of evidence (McConnell and Porter, 2017), student nurses in the present study have expressed feelings of unpreparedness, lack of confidence and competence when faced with providing end-of-life care. These gaps in the provision of palliative and end-of-life care education for the undergraduate nursing student need to be addressed (Cavaye and Watts, 2014; Croxon et al, 2018; Jack et al, 2019). Education and training are fundamental to fulfil nurses' multifaceted role in the provision of palliative and end-of-life care (Croxon et al, 2018; Cleary, 2020).

Taking a population-health approach to care delivery would enable student nurses to function equally well in both hospital and community settings in accordance with the Adult Palliative Care Services: Model of Care for Ireland (National Clinical Programme for Palliative Care, 2019). Thus, flexible curricula that are responsive to emerging healthcare policy and the changing healthcare delivery models in Ireland are needed. Having clear guidance on palliative care in the undergraduate nursing curricula enables students to be better prepared to provide a palliative care approach (Ryan et al, 2014).

The findings of this metasynthesis concur with the wider literature – that there is a need to address gaps in palliative and end-of-life education in undergraduate nursing curricula to improve skills in key areas such as knowledge, skills, organisation of care and teamwork (Cavaye and Watts, 2014).

Education and training to enable a compassionate, highly skilled and competent nursing workforce is paramount. It is apparent that student nurses exposed to care of the dying patient during clinical practice gain a better understanding, increased confidence, and improved competency to care for the dying patient and their family. This adds credence to the call for the prioritisation of palliative and end-of-life education when developing undergraduate nursing curricula (Ballesteros et al, 2014; Cleary, 2020). This metasynthesis contributes further to this body of evidence by including the voices of the student nurses in the conversation and supporting their call to action for the fundamental need for undergraduate nursing curricula to include a greater focus on palliative and end-of-life care education.

Limitations

The inclusion of only English language studies may have led to the omission of relevant international studies. Another limitation is study sample variation: diverse experience levels, age and stage of undergraduate study leading to diverse perspectives. The diverse range of theoretical underpinnings across the studies, in addition to diverse data collection and analysis methods, may have impacted on the overall quality of the metasynthesis. Due to the topic's sensitivity, some methods may have proven more difficult for participants' engagement. The author has interpreted the data gathered within this metasynthesis, with potential transformation of the original findings, although every effort was made to prevent this.

Conclusion

This metasynthesis explored student nurses' experience of palliative and end-of-life care education in undergraduate nursing curricula. Although the importance of the inclusion of these concepts within undergraduate nursing curricula is recognised, significant shortfalls were identified. This metasynthesis offers unique insights into students' concerns regarding the quality of care they can provide to patients and their families at end of life. Undergraduate education shortfalls identified by student nurses caused multifactorial concerns when dealing with the complexities of end-of-life care and warrant further investigation. The overall findings of the metasynthesis build on the existing body of knowledge to strengthen the importance of incorporating palliative and end-of-life education into undergraduate nursing curricula.

KEY POINTS

  • Student nurses reported feelings of unpreparedness, lack of confidence and competence in dealing with end-of-life situations
  • Prior life experience and exposure to palliative and end-of-life care is associated with increased student nurse confidence and competence contributing to positive attitudes to the provision of such care
  • Student nurses want more training and education to improve their communication skills, clinical skills, knowledge and understanding when caring for dying patients and their families
  • Undergraduate education and training are fundamental in preparing student nurses both theoretically and clinically for their exposure to the dying process in practice, and to the complexities involved

CPD reflective questions

  • In your experience, what do student nurses need to know about palliative and end-of-life care to be confident and competent practitioners?
  • What changes are needed in the undergraduate nursing curricula to address shortfalls in knowledge and awareness and feelings of unpreparedness in end-of-life and palliative care provision?
  • How does a lack of undergraduate education and training in palliative and end-of-life care influence student nurses' ability to engage in therapeutic communication with patients and their families?
  • How does prior life experience influence student nurses' need for palliative and end-of-life care education?