Globally, the hospital is a principal provider of care at the end of life (Organisation for Economic Co-operation and Development, 2023), and is high on the policy agenda in England as requiring innovation and reform (NHS England, 2015; Hunter, 2018; NHS England, 2023a). Understanding the experiences of service users is essential to the design of services that are person centred and responsive to people's choices and needs (NHS England/NHS Improvement, 2022).
Accordingly, attention has been paid to meaningful and compassionate engagement with bereaved people to gain personal insights into the provision of end-of-life (EoL) care (Choice in End of Life Care Programme Board, 2015; Office for National Statistics (ONS), 2015; Care Quality Commission (CQC), 2016; Marie Curie, 2021a). The lay public are highly valued and are respected as ‘experts by experience’ (CQC, 2023), with their views being a key source of data for regulatory inspections of EoL care. Not surprisingly, the known opinions and concerns of people who are dying and those important to them are at the heart of national ambitions for quality improvement and change (Leadership Alliance for the Care of Dying People (LACDP), 2014; National Palliative and End of Life Care Partnership (NPEoLCP), 2021).
Evidence of patient and carer experience in the hospital setting has been strongly advocated as a means of supporting the quality and safety of care (Marsh et al, 2019). A number of studies have found that consumers value giving feedback as conversations, using their own words to focus on aspects of care that are important to them (National Institute for Health Research, 2019). Bereaved family feedback is acknowledged as a vital source of learning and quality improvement work (National Quality Board, 2018; Healthcare Quality Improvement Partnership, 2023). The voice of bereaved people has also been strengthened following the introduction of a national medical examiner system that affords the public the opportunity to ask questions and raise any concerns (NHS England, 2023b). An essential consideration, however, is to determine how best to make sense of narrative feedback data and the subsequent use of analyses for effective quality improvements (Marsh et al, 2019).
This article describes the process and outcomes of a project designed to appreciatively analyse bereaved family experiences of EoL care in an acute hospital. The project was deemed to fulfil the criteria of a service evaluation, designed and conducted for the sole purpose of analysing existing data to assess and judge current care (Health Research Authority, 2017). There was no intention to generalise the experiential findings beyond the respective organisation. However, the authors envisaged that the project plan and methods may be transferable to other settings. The project proposal was endorsed and monitored by an established EoL steering group within the hospital clinical governance structure.
Background
In July 2020, a hospital-based specialist nurse for bereavement (JJ) commenced a log of informal feedback, voluntarily provided by a relative of a deceased person during a routine telephone conversation. Between July 2020 and the end of June 2021, this totalled 245 individual bereaved family experiential accounts of EoL care in adult inpatient areas. Organisationally, this represented clinical services in two divisions: 13% surgical and 87% medical and emergency care.
The feedback was hand-written in note form without verbatim citations, and prepared as a word-processed document at the end of each month. Each experiential account ranged from a single sentence to a few lines, and was anonymised in relation to patient, family and staff members. The information that family members shared in conversation with the bereavement nurse was considered supplementary to other forms of feedback obtained via the hospital Patient Advice and Liaison Service (PALS), including compliments, concerns and complaints. First established under the The NHS Plan (Department of Health, 2000), PALS provides help, information and advice to service users with experiential concerns. The authors therefore acknowledged the potential for duplication of experiential data from different sources.
Methods
The design and management of this project reflected a traditional five-stage lifecycle comprising: initiation, planning, execution, monitoring, and closing. A key area of discussion at the initiation stage centred on the method for analysing bereaved family feedback. Choice and agreement were reached in consultation with staff members of an established EoL steering group and by turning to the literature to inform suggestions and ideas. Both approaches have been recognised as important to a project's success (Department for Business, Innovation and Skills, 2010) and, in the authors' experience, provided a strong theoretical basis to, and ownership of, decisions within the project plan.
A study by The King's Fund (2015) identified support for improvement, rather than punishment for poor results, as critical for encouraging all staff to engage in the concept of patient experience. Further, providing clinical staff with evidence of good feedback can be a powerful motivator for change (Swift, 2022). This is supported by Dadich and Farr-Wharton (2020) who presented a compelling case to redress negative healthcare discourse with a more positive scholarly orientation.
The power of positive dialogue is emphasised in appreciative inquiry (AI); a four-phase cycle to organisational learning that favours a more strengths-based approach (Trajkovski et al, 2013). First introduced in the 1980s by David Cooperrider and Suresh Srivastva, AI deliberately focuses on ‘the good’, rather than thinking in terms of problems, solutions and plans (Cooperrider and Srivastva, 1987). An underlying premise is that people are energised and inspired by stories of what works well, which in turn can set the stage for creating positive change (Cooperrider et al, 2008). In a recent systematic review and narrative synthesis of AI studies in health care, Merriel et al (2022) concluded that AI has the potential to positively impact clinical care and may be particularly useful in the context of quality improvement.
The discovery phase of AI served as a basis for this project, this being the place where the storytelling and meaning-making begins (Cooperrider et al, 2008). The primary goal was to analyse and interpret bereaved family feedback in order to discover, appreciate and disclose EoL care at its best. We did not set out to polarise positive and negative care experiences, or to focus on positive experiences alone. Rather, a positive orientation was adopted and maintained by isolating affirmative feedback indicative of good EoL care, and constructively reconfiguring negative narratives to represent the characteristics of what good EoL care could or should be. A positive lens through which to view bereaved family feedback was underpinned by an equally optimistic premise that staff would be motivated by examples of exceptional practice and outstanding behaviours, and be receptive and responsive to change through good news experiential accounts.
The method of directed qualitative content analysis (Hsieh and Shannon, 2005) was selected for its value in interpreting the content of text data. Consistent with the method, analysis began with an a priori coding frame generated by a review of extant research into family experiences of in-hospital EoL care for adults, which was subsequently published as a qualitative systematic review comprising five synthesised findings (themes) and 12 categories (Walker et al, 2023) (Table 1).
Table 1. Thematic template for analysis
| Themes | Categories |
|---|---|
| Understanding of approaching end of life |
|
| Essential care at the end of life |
|
| Interpersonal interactions |
|
| Environment of care |
|
| Patient and family care after death |
|
Source: Walker et al, 2023
A range of discrete EoL issues of relevance to each category further served as a guide to the analyst. We viewed this as a potentially evolving list of subcategory findings on the same phenomenon. A selective highlighting technique was used to colour code and categorise the feedback while remaining attentive to any new insights. Local context-specific EoL care issues and fresh perspectives were revealed as the project progressed, possibly reflecting routine developments in clinical care and service provision. An array of highlighted findings and single words also revealed sentiments of positivity in which bereaved family members commended care, offered praise and expressed gratitude. This resulted in a new theme of ‘Family satisfaction’ and the category of ‘Appreciation and tributes.’
An experienced qualitative researcher (WW) and a specialist nurse in palliative care (MA) undertook the role of analysts, initially as co-analysts, to ensure a common understanding and application of the process and subsequently as single analysts. The two analysts met on a regular basis to review individually interpreted findings, a part of the analytic process that appeared to benefit from the combined knowledge and skills of a researcher and practitioner. Equally, it was important to acknowledge that the coding process and interpretations of feedback were influenced by the coders' prior experiences and expertise.
Cumulative analyses, representing bereaved family feedback over a 12-month period, were summarised by counting the frequency of subcategory findings and, in turn, this provided an aggregated score for each theme. The authors also highlighted the range and frequency of words representing favourable descriptions of EoL care and staff praise. Anonymity and confidentiality of data were maintained at all stages of the project. It was agreed to report the findings without reference to any information that could identify a particular patient, the bereaved family, staff member or the specific environment of care.
Findings
The outcomes of analyses and aggregated data culminated in the identification of priorities of care and associated care interventions of importance to bereaved people whose relative had died in the hospital setting. Thematically, the findings portrayed family members' need for clear, factual and truthful information about their relative's condition and approaching end of life; essential care at the end of life for the dying person and emotional family care and support; and interpersonal interactions concerning staff demeanour and the family communication needs. Overall, 63% of family members expressed satisfaction, with commendations of EoL care and staff praise most often conveyed.
An important part of the project plan was ensuring clear communication of the findings to the providers and recipients of care. Rather than producing a written report or fact sheet, the authors sought to make the data accessible and easily understandable for stakeholders by concisely presenting key information in visual forms. This comprised two methods of dissemination: the design and display of an infographic poster in each ward/department (Figure 1) and a slideshow presentation at internal professional forums, including the organisation's trust board.
The authors also designed and delivered a SWAN champions reflective practice workshop to support learning and practice development. First implemented at the authors' organisation in 2015, the SWAN champion serves as a positive role model for care quality in accordance with the principles of the SWAN Model of End-of-Life and Bereavement Care (Box 1). The workshop emulated the positive principle of AI. We set a tone of discovering, appreciating and learning about good care, and the celebration of caring practices of importance to patients and their family at the end of life. Individual and collective participation was achieved through facilitator-led dissemination of the project findings and participants' sharing of experiential accomplishments. The priorities of care were also presented as an aid to reflection-in-practice when experiencing and supporting EoL care, and to assist debriefing, learning and practice development within respective areas of care. The structure, organisation and content of the workshop was positively evaluated, and all participants strongly agreed that it had inspired them. The facilitators sensed a positive reaction to AI, and this was reflected in written evaluative feedback:
Box 1.SWAN Model of End-of-Life and Bereavement CareThe SWAN (Sign, Words, Actions, Needs) model aims to promote dignity, respect and compassion at the end of life and after death.Since its inception in 2012, the model has been widely adopted by organisations and services in England, and is judged to be adaptable to different settings and circumstances.A SWAN symbol, representing the model, is used for dedicated resources such as a SWAN personal property bag, and for signage and facilities. This recognisable branding raises the profile and awareness of care and support for the dying person and their family.The offer of mementoes, such as photographs, handprints and locks of hair, and facilitating patient/family time together, are memory-making activities embedded in the model.Intended outcomes are perceived to be: a person-centred approach to care; staff who are enabled and empowered to meet individual's needs; consistent standards of care; and an organisational culture that prioritises end-of-life and bereavement care.Sources: Murphy, 2019; Stewart-Lord et al, 2022
‘I admire the project/feedback being through a positive lens. This made me feel proud … we all need a positive reminder.’
‘Motivated me to act on this and try to do better …’
‘Refreshing to focus on things we are getting right, as well as things that need improving.’
Consistent with the philosophy of the project, the workshop presented an opportunity to thank the SWAN champions for their role and contribution to EoL care within the organisation; both verbally and with small take-away tokens of appreciation.
Discussion
This project, based on the principles of AI, involved the discovery and dissemination of a collective appreciation of bereaved family experiences of EoL care. Importantly, real and challenging problems were acknowledged, but in a way that invited staff to recognise, learn from, and build on apparent hallmarks of high-quality care. The thematic findings provided local context-specific insights for use in harmony with national priorities of care for people who are dying and those close to them (LACDP, 2014).
Care of the dying person was a dominant theme, with symptom management, comfort and a peaceful death of particular importance to family members. Managing symptoms, including pain, is an essential part of EoL care (Baillie et al, 2018) and, as death approaches, more aggressive palliation may be required (Rome et al, 2011). A survey to ascertain public attitudes to dying and death in the UK revealed that a top priority for adults was to be free of pain and other symptoms (Marie Curie, 2021b). Pain control and symptom management also feature highly in definitions of what constitutes ‘a good death’ from both patients' (Meier et al, 2016; Krikorian et al, 2020) and family members' (Meier et al, 2016) perspectives.
There are many responsibilities when caring for people who are dying, and the workforce must be competent and up to date in the knowledge and practice required (NPEoLCP, 2021). In addition to providing physical comfort and care, interpersonal skills and qualities are essential to fostering effective staff-patient-family interactions (Brent et al, 2018) and appropriate emotional support (Health Education England et al, 2017).
Communication permeates all aspects of EoL care and is a core component of competence in palliative approaches to care (Ekberg et al, 2021). Relational components of care were prevalent among our project findings, with four of the five identified care priorities falling under this umbrella. Consistent with the priorities for care of the dying person (LACDP, 2014), and previous research with bereaved families whose relative died in the hospital setting (Walker et al, 2023), the authors' findings exemplified the need of family members to understand their relative's condition and approaching end of life. Conversations about illness progression and end of life can be uncomfortable and challenging for staff (Galushko et al, 2012; Parry et al, 2014), yet they are of upmost importance to all participants in the conversation – the terminally ill, family members, and health and palliative care professionals (Keeley, 2017). Our bereaved family members most often mentioned the demeanour of staff in having or showing compassion when providing care and support. Compassion is a fundamental element of nursing care and is known to be aligned with family experiences of good EoL care in the hospital setting (Robinson et al, 2020). It is a core value of person-centred care (van der Cingel, 2022) and a concept of significance to collaborative practice in palliative and EoL care (Pfaff and Markaki, 2017).
Family-centred EoL care is typically characterised in the literature as comprising participation, partnership and presence; these are goals that were severely challenged during the COVID-19 pandemic (Hart et al, 2020). In 2020, coronavirus (COVID-19) was responsible for a rise in the overall number of deaths registered in England and Wales, with deaths in hospital being 4% above the 5-year average (ONS, 2021). National research in the UK has subsequently evidenced the associated challenges in supporting patients and families at the end of life and into bereavement (Harrop and Selman, 2022) and highlighted the importance of proactive, timely and informative communication (Mayland et al, 2021).
Maintaining a connection with people who were grieving and bereaved was a priority of frontline work in our hospital during the pandemic, as evidenced in our contact with 245 family members whose feedback inspired and enabled this project. The findings are reflective of EoL care during 2020-2021 and should therefore be viewed in the context of COVID-19 and associated pandemic restrictions. Potential influences on the project findings are duly acknowledged, for example, a commonly expressed need to be with the dying person and to be kept updated and informed. Ongoing analyses of bereaved family feedback will allow a comparison of findings over time. To this end, the project has been adopted as routine business within our hospital bereavement service.
Conclusion
This article has presented the process and outcomes of a project designed to gain an appreciative understanding of bereaved family members' experiences of EoL care in an acute hospital setting. Thematic findings provided insights into caring practices of importance at the end of life and commendations that served as a benchmark of satisfaction with care. Based on the authors' experience, AI offers an innovative and motivational approach to organisational learning through the analysis and dissemination of bereaved family feedback data. Maintaining a momentum of positivity helpfully enabled staff to recognise and aspire to family descriptions of EoL care at its best. To quote Dame Cicely Saunders, the founder of the modern hospice movement: ‘How people die remains in the memory of those who live on.’ This poignant message should serve as a constant reminder of the potential lasting impact of EoL care experiences on family grief and bereavement.
KEY POINTS
- Globally, hospitals are a principal provider of care at the end of life
- Transforming end-of-life care in acute hospitals and other settings is high on the policy agenda in England
- Appreciative inquiry is a strengths-based approach to organisational learning and change
- Experiential feedback makes an important contribution to understanding person-centred priorities of care at the end of life, the characteristics of high-quality care and opportunities for service improvement
CPD reflective questions
- Based on the end-of-life (EoL) interventions discussed in this article, what clinical and relation practices do you recognise as important to the patient and family experience of good EoL care?
- Do you have a practice guideline for the assessment and management of pain for patients approaching the end of life?
- Reflect on an EoL care situation you have encountered in clinical practice. What communication practices were used to aid family understanding of the patient's deterioration and to keep them updated and informed?
- In what ways do you feel that EoL care practices in your area might benefit from bereaved family feedback?