Internationally, the role of the key worker was introduced to enhance patient-centred care and is a fixture across health and social care systems (Brogaard et al, 2011; International Association for Hospice and Palliative Care, 2019a). Since its first description by the World Health Organization (WHO) in 2016, there has been little evidence of the implementation of a clear definition of this role across the globe. Without standardisation, the title, role and function vary accordingly within and across countries and professions (Feuz, 2014; Hull and Turton, 2014). For example, in the UK, variance of key worker roles across clinical settings exist (Table 1).
Table 1. Variance of key worker role across clinical settings for adults and children
| Profession | Key worker role |
|---|---|
| Social worker | Trip et al (2016) showed that key workers could be support workers, supporting people with intellectual disabilities to self-manage their diabetes and were not required to be registered nurses to fulfil the role. They were following established role regimes provided by district nurses. |
| Specialist paediatric oncology nurse | Support children and their families. Hull and Turton (2014) required the role to be further defined. |
| General practitioners | Brogaard at al (2011) found a difference in opinion as to whom should take on the role of key worker in the primary care setting. Families felt that they could take on this role. |
| Mental health nurse | McCombe et al (2019) found that the feasibility of a key worker in patients with a mental health condition, enhanced physical health through better interaction between primary and secondary care |
| Psychologist | Identified in Australia by Davis et al (2019) to work within paediatric disability teams—the key worker role is geared towards promoting parents' mental health and wellbeing |
| District nurse | Identified as ideal to attain the key worker role—establishing care that is coordinated and person-centred to reflect the client's individual needs (Department of Health, Social Services and Public Safety, 2018) |
There has been an upshoot in the demands faced by the palliative care sector globally (Centeno and Arias-Casais, 2019) and nationally (von Petersdorff et al, 2021) for its services rendered. However, there is a need for coordination to meet such demands. Within palliative care, the key worker is described as a professional whose key responsibilities are the planning and coordination of care of patients requiring end-of-life care, with an aim to maximise their quality of life (Palliative Care in Partnership, 2017). Generally, they are based in the community care setting and are responsible for engaging with patients and their families while sharing information with the wider multidisciplinary team (Gold Standards Framework, 2009). They can also develop therapeutic relationships with the patient and their family to become an effective advocate before deterioration, thus facilitating shared decision–making. This also allows the key worker to network with other services (including voluntary) to help provide the tools for the best quality of life before death (Department of Health (DH), 2010; Health and Social Care Board, 2017).
The concept of the key worker role is recognised in the UK through inclusion in policies and guidances (National Institute for Health and Care Excellence (NICE), 2004; DH, 2009; 2010; Department of Health, Social Services and Public Safety (DHSSPS), 2018). It was initially proposed that different practitioners would likely perform the key worker role (NICE, 2004), but this proved challenging (Brogaard et al, 2011). However, nationally, the district nurse as a palliative care key worker has been endorsed (NICE, 2004; DH, 2009; 2010; National Council for Palliative Care and Skills for Care, 2014) and it is recommended that every person in need of end-of-life care should have an identified key worker (DH, 2010). Despite some regional guidance existing that advises how the implementation of the key worker role should look, no national guidance exists to cover the four areas of the UK (Ling et al, 2017). Consequently, a lack of interprofessional understanding regarding roles and abilities ultimately has a negative impact on the provision of high-quality care for patients (Deshkulkarn, 2009). It is important to recognise the key worker role and what the expectations are, as this is crucial to developing and fulfilling current policies. In light of this, the aim of this current review was to provide an overview of the existing literature on the roles and responsibilities of a palliative care key worker.
Method
Scoping review
Given the lack of existing systematic reviews of the evidence base and the wide remit of the study, a scoping review was considered the most suitable design (Arksey and O'Malley, 2005; Moher et al, 2009). The review was guided by the Joanna Briggs Institute (2015) to ensure that rigour and methodological frameworks were up to the highest standard (Arskey and O'Malley, 2005; Levac et al, 2010; Peters et al, 2015). The search was undertaken in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guidelines for scoping reviews (PRISMA-ScR) (Tricco et al, 2018). To further guide the search, process definitions (Table 2) were adhered to.
Table 2. Definitions of key terms
| Term | Definition |
|---|---|
| Role | It is recognised that the concept role and responsibility may overlap, therefore, the authors defined a role as the overarching nature of the key worker's function |
| Responsibility | Responsibility refers to the specific tasks they are required to undertake |
| Palliative care | For the purpose of this study, the World Health Organization (2016) definition of palliative care will be adopted: ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’ |
| District nurse (also referred to as community nurse) | District nurse is defined as ‘a registered nurse with a graduate level education possessing a district nursing specialist practitioner qualification recordable with the Nursing and Midwifery Council’ (Department of Health, Social Services and Public Safety, 2018) |
Based on this information, two research questions were developed, informed by the evidence base:
- What is the expected role of the palliative care key worker in palliative and end-of-life care?
- What are the responsibilities expected of the palliative care key worker?
Search strategy
In collaboration with the specialist librarian, the following academic databases were searched: MEDLINE (via Ovid), Scopus and Web of Science, from April 2003 to July 2021. In 2004, NICE issued the first guidance for the key worker role in supportive and palliative care services for adults with cancer in the UK. Therefore, the year before (2003) was selected as the starting point to ensure no evidence was missed. In line with the Joanna Briggs Institute (2015) the search terms were developed from a preliminary search of two empirical databases (Medline and Scopus) and with input from experts in the area. Terms were searched as both keywords in the title and/or abstract and subject headings (i.e. Medical Subject Headings (MeSH)) and truncated for variations in spelling (e.g., Nurs*) as appropriate. Boolean logic and operator (AND/OR) were also used to expand the search. See Table 3 for key terms.
Table 3. Search terms
| Subject | Search terms |
|---|---|
| Key worker | Key workers, link worker, support worker, case management, case manager |
| Palliative care | Care of dying, care of the dying, dying, edge of life, end of life, end-of-life care, hospice care, palliative, palliative care services, palliative therapy, supportive care service, support care, supportive care, terminal care |
| Community nurse | District nurse, district nur*, community health nurs*, community healthcare nurse, community nurs*, named nurs* |
Grey literature was also searched, including reference lists of papers found, Web of Science Conference Proceedings and organisation websites, including the Palliative Care Forum for Northern Ireland, Nursing and Midwifery Council (UK) and Palliative Care Research Society, UK, and European Association of Palliative Care (EAPC).
All articles were subject to eligibility screening by two independent investigators (MB and FH). The following credibility criteria was formulated and used to determine what studies and evidence were eligible for inclusion in this review (Table 4).
Table 4. Inclusion and exclusion criteria
| Type | Inclusion | Exclusion |
|---|---|---|
| Time | April 2003–July 2021 | Papers published before 2003 |
| Setting | Community care setting | Acute care settings/community hospital setting |
| Language | Papers to be written in English | Non-English documents |
| Type | Quantitative, qualitative, or mixed method research based on UK and European sites | Editorials, commentaries, case reviews |
| Focus | Studies that have focused on the community nurse key worker within palliative care | Study that did not focus on the community nurse key worker role |
A total of 34 articles were retrieved from the search (Figure 1). Upon removal of duplicates, this resulted in 13 articles, which were screened based on title and abstract. This process resulted in five articles subject to full text review.
Data extraction and analysis
An extraction form was developed to chart the data, based on the research questions (Table 5). As suggested by Levac et al (2010), data was extracted independently by two investigators (MB and FH).
Table 5. Data extraction form
| Study and country | Aim | Design | Method | Sample | Findings | Limitations |
|---|---|---|---|---|---|---|
| Dunne et al (2005) , Northern Ireland | To explore district nurses' experiences of providing palliative care for patients with cancer and their families | Qualitative design. Unstructured interviews | Husserlian phenom-enological approach Unstructured interviews. Colaizii's seven stages of data analysis used to interpret data | Purposive sample of participants who had experienced the phenomenon. Participants were registered nurses with at least 1 year's experience working in a district nursing team. Caseload had to have 20% of patients requiring palliative care. Some 125 participants invited to take part—32 did not reply, 30 declined invitation and 38 did not meet the sampling criteria. 25 district nurses included in the study | District nurses were unaware that they were recommended as key workers. They provided palliative care to patients with an array of complex conditions. Their experiences of providing this care was challenging. The study identified district nurses to be best placed as key workers in palliative care | Only females involved recruited. Transferability of the findings of the study should be considered. Study did not include all life−limiting diseases |
| Broggard et al (2011) , Denmark | Exploration of who takes on the role of key worker and who patients, families and primary care professionals believe should hold the role | Quantitative mixed. Mixed methods design using structured interviews and question-naire study | Structured interviews with end stage cancer patients. EORTC QLQ C15-PAL themes identified. Questionnaires to relatives and healthcare professionals. To describe participants' views, frequencies and percentages were calculated. Kappa coefficients used. Data analysed using STATA | Adults with advanced, terminal cancer. Patients excluded if cognitively impaired. Patients were recruited prior to hospital discharge following the inclusion criteria and also from primary care teams. Some 160 patients approached and a total of 96 adults were recruited | There is no one person allocated the key worker role, with patients, relatives and professionals viewing themselves as such. GP is the ideal key worker | Estimates were made of representativeness. Some 29% of interviews took place in the hospital setting prior to discharge. Hospital staff selected participants based on set criteria, and there may have been selection bias in this process, as the more vulnerable were not invited to participate. Excluded patients may have had the most complex symptoms. Those discharged to hospices and nursing homes were excluded |
| Van der Plas et al (2017) , Netherlands | The views of informal caregivers regarding the volume of professionals involved in providing primary palliative care | Quantitative design using questionnaires | Case managers and a relative of the patient were both sent questionnaires 2 months following the patient's death. Analyses were performed using SPSS and IBM statistics | Some 726 people were identified as possible participants for the study and sent questionnaires, and 183 were returned. The participants were 35% male and 65% female | The range of professionals included in providing care was appropriate. The case manager gave appropriate information more than the primary care team. Case managers spent more time with patients, providing reassurance to relatives. Involvement of a case manager should be promoted at an early stage | Only a 25% response rate. Response could be altered due to the level of quality palliative care received. Partners of patients gave more positive responses than that of the children of patients. Results could be biased when patients were visited more frequently from the case manager than those who only had received one visit. Specific questions omitted regarding the community nurse where assumed that there was no nurse involved (31%) |
| Ling et al (2019), England | Patient and staff perspectives on the role of key workers in cancer care | Quantitative design. Questionnaire | Structured questionnaires for both patients and staff. Analyses were performed using SPSS | Some 204 questionnaires sent to clinical nurse cancer specialists—101 completed. Some 200 questionnaires sent to patients undergoing cancer care—46 completed | Perspectives on the role differed between the nurse and the patient. Patients were keen to have the same key worker throughout their illness. This was not the case for staff; 28% felt that the same key worker should not stay with the patient throughout their journey. Staff were less keen to undertake the role, as only 7.9% had specific key worker training | Only two nurse participants were male. Low response rate from patients. Possible sample bias as the nurse requested patients to participate. Study only focused on patients with cancer. Study based in secondary care |
| Midlov, and Lindberg (2020) , Sweden | To highlight district nurses' experiences of providing palliative care in the home | Qualitative design. Semi-structured interviews | Semi-structured interviews with 12 district nurses. These interviews were analysed according to the qualitative content analysis method | 12 district nurses with a specialist nursing education who had been working as district nurses for between 7–34 years (mean 21 years). The nurses had worked in home care for 5-34 years (mean 21 years), and this included experience of providing palliative care in the home and eight of the 12 district nurses had previous education in palliative care. Participants were recruited through contact with their managers and the aim was to recruit participants who shared some characteristic features representing what was required for the study | The three main findings of the study were that collaboration with others was deemed as essential, providing palliative care in the home is emotionally demanding but rewarding, and the work is additionally time- and expertise-consuming. District nurses would like more resources and organisational changes, such as access to doctors and a palliative home care team who only work with these patients, as this would benefit both district nurses and patients | Small study with just 12 participants. The researchers had no experience of district nursing and noted that interview quality is dependent on knowledge and approach – they stated they found it difficult to avoid leading questions so the openness and depth of the interview may have been affected |
All papers were independently read and subject to thematic analysis using Braun and Clarke's (2006) framework by two of the authors (MB and FH). Key similarities and differences were categorised and developed into themes (Arskey and O'Malley, 2005; Levac et al, 2010), which helped highlight gaps in the literature.
Overview of the findings
Of the five papers, two were undertaken in the UK (Dunne et al, 2005; Ling et al, 2017), while the remaining studies were international (Brogaard et al, 2011; van der Plas et al, 2017; Midlöv and Lindberg, 2020). Two papers adopted a qualitative design (Dunne et al, 2005; Midlöv and Lindberg, 2020), while three had a quantitative approach (Brogaard et al, 2011; Ling et al, 2017; van der Plas et al, 2017). Dunne et al (2005) undertook unstructured interviews guided by the Husserlian phenomenological (the study of structures of consciousness as experienced from the first–person point of view) approach. Midlöv and Lindberg (2020) conducted semi-structured interviews which were then analysed according to the qualitative content analysis methods. Brogarrd et al (2011) used a validated instrument (EORTC QLQ C15 PAL) to assess views, while Ling et al (2017) and van der Plas et al (2017) used unvalidated instruments. All studies used purposive sampling. Participant groups varied from registered nurses (Dunne et al, 2005; van der Plas et al, 2017; Midlöv and Lindberg, 2020), to case managers, patients and other staff (Brogaard et al, 2011; van der Plas et al, 2017; Ling et al, 2017). Sample sizes ranged from 12 to 183.
Reporting results
From the five papers reviewed, two themes were evident: perceptions of the key worker role regarding palliative home care and barriers to the implementation of the key worker role.
Theme 1: Perceptions of the key worker role regarding the provision of palliative home care
Studies highlighted views from patients, families and healthcare professionals regarding the function and impact of the key worker's role on palliative home care. Uncertainty about the role, operationalisation of the key work, and differing views about who should occupy the role were evident in these studies.
Although the key worker role was advocated as being beneficial for continuity of care in all studies, there was some lack of agreement about who would be ideally placed to adopt the role, or whether it should be defined as a separate role. Specific details on the responsibilities and core competencies of this role were not reported. Rather, studies focused on who was, or should be, responsible for this position, and there was uncertainty about what the role entailed. For example, van der Plas et al (2017) reported that, in the Netherlands, both the GP and district nurse occupied this role; in England, it was the community nurse (Ling et al, 2017). Brogaard et al (2011) reported differences of opinion between patients, relatives and professionals about who was ideally suited to the role. Dunne et al (2005) reported that, even though their study participants (district nurses) acted as key workers, they had not been formally designated as such.
In Denmark, Brogaard et al (2011) emphasised the need to nominate a key worker to ensure clinical continuity of care for patients at the end of life. Results indicated that both GPs and community nurses viewed themselves as fulfilling this role, while patients felt that GPs were best suited to be a key worker. However, relatives believed they were best placed to be the key worker. Brogaard et al (2011) concluded that, as there was a difference of opinion between healthcare professionals and patients/relatives about who should occupy the role of key worker, some professionals may have overestimated how much they personally coordinated patient care.
Similarly, differences in perspectives between clinical staff and patients regarding the key worker role were revealed in a UK study by Ling et al (2017). In this study, a non-validated questionnaire, with a non-purposive sample of patients (n=46) and community nurses (n=101) explored perspectives on the key worker's role within cancer care. Staff respondents viewed the term ‘key worker’ as a formalisation of existing working practices, potentially signifying a lack of awareness of the function of this role. On the other hand, patient participants reported that the role of key worker was ‘highly valued’. However, findings of this study did not go as far as revealing if patient care would have been different if they had not been assigned a key worker.
In the Netherlands, van der Plas et al (2017) explored the views of informal caregivers on the introduction of a case manager (a specialist palliative care nurse) to complement the existing care of a community nurse and a GP. Caregivers generally perceived this addition to their care team as beneficial, particularly around the provision of specific knowledge of palliative care being offered by the specialist palliative care nurse. However, authors emphasised that, although the introduction of a case manager was valued, caregivers also needed a clear understanding of roles and responsibilities of each of the professionals involved.
In Northern Ireland, Dunne et al (2005) explored the experiences of district nurses providing palliative care for cancer patients and their families. District nurses were described as dealing with practical elements of their usual role and overcoming challenges in liaising with other professionals, thus fulfilling a crucial care coordination role. Overcoming obstacles, such as accessing out of hours support, and late referrals of patients to community palliative care teams meant that district nurses had to develop relationships and undertake care coordination between a range of healthcare professionals and patients/families. It was also reported that communicating the patient's prognosis and dealing with the precarious position of providing care when the patient was not fully aware of their future could be problematic. This was further complicated by a lack of training in how to include children/adolescents into such communication.
While dated, Dunne et al (2005) noted that, within their geographical location, the provision of palliative care was ‘disjointed’ and that this could be improved through the introduction of one person who could be responsible for overall coordination of care. The district nurse respondents in this study had not been identified as key workers despite other district nurses in neighbouring health trusts being designated this status. This potentially signified ambiguity about the perception of the role of the key worker, and dissonance between policy and practice in this region. Dunne et al (2005) recognised that, although an integrated approach to care needed to be maintained, district nurses should be identified as the key workers within palliative home care, thus improving standardisation of this role.
Theme 2: Barriers to the implementation of the key worker role
Although participants in selected studies understood the importance of care coordination in palliative home care, issues around communication and training, and uncertainty around the key worker role appeared to be barriers to implementation.
Ling et al (2017) reported that community nurses' implementation of the key worker role had been communicated to them in an inconsistent manner, signifying a lack of standardisation and adherence to policy guidelines. This was further complicated by a lack of specific training and detail of the role in the clinical setting. Those who were allocated the role did not see a difference in their existing role, nor did it impact on the time spent with patients, but it did result in additional paperwork. More recently, Midlöv and Lindberg (2020) reported the experiences of district nurses in providing palliative home care, highlighting the complexity of the role and the need for collaboration. The findings of this study revealed the complexities of the care coordination role, and district nurses reported that additional resources, greater access to the palliative care team and continuous training in palliative care would improve the provision of palliative home care and care coordination.
The findings of Brogaard et al (2011) indicated disagreement between nurses, doctors, patients and relatives about the key worker concept. This was the only study where patients and carers viewed themselves as key worker, over and above doctors and nurses. GPs and community nurses also viewed themselves as key workers. Although this may signify confusion about the role of the key worker, the authors assert that the reasons for such differences in opinion might likely be due to ‘real disagreement concerning role and task distribution’ of the key worker. In light of this, calls for explicit communication regarding each contributor's role in palliative home care was recommended (Brogaard et al, 2011; van der Plas et al, 2017), so that effective palliative care coordination might be achieved.
Discussion
This review sought to provide an overview of the existing literature on the role and responsibilities of the palliative care key worker. Despite being advocated in policies and guidelines (NICE, 2004; DH, 2009; DHSSPS, 2018), the palliative care key worker is largely invisible in the empirical literature, with only five studies published. This represents a lack of understanding of the impact of the role on patients' and caregivers' journey at the end of life. Unsurprisingly, all of the studies established the need for further research into the role of the palliative care key worker.
Two studies explored the experiences and views of those who deliver the role in practice (Dunne et al, 2005; Midlöv and Lindberg, 2020), while the remaining studies concentrated on patients, relatives, or other professionals (Brogaard et al, 2011; Ling et al, 2017). No study identified who was best placed to fulfil the role of the key worker in palliative care, which reflects the complexity of providing coordinated care across generalist and specialist providers and multidisciplinary teams. Care coordination has been viewed as vital for patients' continuity of care at the end of life (Schultz et al, 2013), with key workers being an important component of such care (NICE, 2004; Boyd et al, 2009), yet results of the current review suggest uncertainty and lack of standardisation around the key worker role within palliative home care.
Findings of the current review highlighted barriers to the implementation of the key worker role, specifically training, education and clarification of the role. Feuz (2014) found that interdisciplinary collaboration was key to the provision of high-quality effective palliative care. However, physicians are usually considered to be the ultimate decision-makers (Bélanger et al, 2014). Feuz (2014) asserts that key workers are ideally placed to overcome professional culture barriers through facilitating improved communication within the interdisciplinary team. However, as reflected in the authors' findings, lack of clarity around the role, ineffective communication leading to mismatched expectations and lack of training for the role is often experienced within interdisciplinary palliative care teams, potentially leading to a reluctance to implement the role in a standardised way.
All selected studies discussed the community nurse within a vital care coordination role, but none established how the key worker role could be amalgamated into the role of the district nurse more fluently. Specialist education required to undertake the key worker role was also not deeply explored. The role needs to be valued by those who will be delivering this patient-centred care, therefore, more attention is required in this area.
Given the dearth of existing literature on the palliative care key worker role, the findings of this scoping review highlight gaps that exist in relation to the utilisation, implementation and effectiveness of this role in clinical practice. Included studies are generally small scale with two based on international findings, limiting the generalisability of the findings. Findings from the studies are mainly inconclusive regarding the role and responsibilities of the palliative care key worker. This scoping review supports the claim in previous research (Feuz, 2014) and editorial pieces (Berry, 2015) that there are gaps in understanding of the key worker's role in palliative care. Further exploration and research are required to establish the role of the key worker and how the role is allocated, implemented and gauged to be effective within health systems.
Conclusion
Review findings indicate a dearth of research and understanding of how the palliative care key worker role is operationalised in practice. The results highlight that the role was advocated for continuity of care; however, uncertainty regarding who should adopt this role was evident, and barriers underpinning the implementation of the role in practice were reported. Further research is warranted to establish the role of the key worker and how it is allocated, implemented and gauged to be effective within health systems. This is imperative to improve our understanding on how the key worker role can be more effectively translated from policy to practice within a palliative home care setting.
Key points
- The key worker is described as a professional with a responsibility for planning and coordinating care for patients who have been identified as requiring end-of-life care, aiming to maximise their quality of life
- This review highlights a lack of previous research in relation to roles and responsibilities of key workers in community-based palliative care
- Although findings demonstrate that the role of the key worker is advocated for continuity of care, uncertainty regarding who is best placed to adopt this role and undertake tasks involved in this role wasevident
- Barriers that underpin the effective implementation of the role within community-based multidisciplinary palliative care teams were reported
- Further research will allow exploration of the role of key workers and how the role is allocated, implemented and gauged to be effective within health systems.
CPD reflective questions
- What are your thoughts, assumptions, and expectations about the key worker's role in palliative care?
- What support mechanisms need to be in place to aid this role in your practice?
- How would a community palliative care key worker impact upon your practice?