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Abstract
Objectives Nurses are generally present, and often influential, in supporting patient and family acceptance of medical futility and in assisting doctors in negotiating referral to palliative care. Yet the specificities of the nursing role and how nurses may contribute to timely and effective referrals is not well understood. This study aimed to systematically explore hospital-based nurses’ accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions.
Design Qualitative study using semistructured interviews.
Setting Two health services with public as well as private clinical environments in a major metropolitan area of Australia.
Participants Hospital-based nurses (n=20) who regularly work with patients at the point of referral and in managing transitions to palliative care.
Results Four significant themes emerged from thematic analysis. These include: (1) professional dynamics and the roles played by nurses in initiating the transition to palliative care; (2) the value of nurses’ informal interactions in timely and effective transitions; (3) the emerging challenge of managing task-oriented nursing versus intense emotional nursing work at the point of medical futility and (4) the emotional burden experienced by nurses within this clinical context. Nurses self-reported occupying critical albeit complex roles in the management of medical futility and the transition to palliative care. They reported experiencing significant emotional burden in balancing interpersonal and interprofessional relationships during this time.
Conclusions The results suggest that nurses may be utilised in a more formalised and systematic fashion in the context of managing medical futility and the need to topicalise the transition, with the focus shifted away from medical referrals towards more team-based and patient-centred timely transitions. Further research focused on the experiences of doctors, allied health professionals, patients and families is required to provide a broader interdisciplinary understanding of futility and contributions to the negotiation of palliative care.
- QUALITATIVE RESEARCH
- PALLIATIVE CARE
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Strengths and limitations of this study
Provides depth of insight into informal and undocumented roles and responsibilities in the context of futility.
Highlights the crucial roles played by nurses in initiating and managing transitions to palliative care.
Exposes the significant emotional burden of nursing work at this clinical transition.
The sample size, which while appropriate for a qualitative study, could be expanded through other sites and exploration of non-nursing perspectives.
Introduction
Transitioning patients to palliative care from life-prolonging interventions can be a difficult aspect of clinical work,1 ,2 with significant patient and family distress reported in studies of negotiating futility.2 ,3 The difficulties some health professionals experience in topicalising the need for palliative care,2 ,4–6 and resistance among patients and their families,7–9 can contribute to this care transition being poorly communicated and/or negotiated.10 ,11 Clinical evidence has pointed to the benefits of early and well-managed transitions to palliative care in terms of quantity and quality of life. 2 ,12 While the role and perspectives of doctors have been previously explored,4–6 ,13 the role of nurses at the point of futility and referral to palliative care has been virtually ignored in the clinical literature. Specifically, their role in the very sensitive work of negotiating futility and in facilitating patient transitions to palliative care. Our aim in this study was to systematically examine nurses’ self-reported accounts of supporting the transition to palliation in a context whereby adherence to best-practice guidelines for more effectively and timely transitions are being urgently called for.12 ,14
Nursing and the transition to palliative care
The lack of attention paid to the nursing role in transitioning patients to palliative care is surprising given the presence of nurses at the patient's bedside. This is particularly the case for patients who have few remaining life-prolonging intervention options available, as caring duties typically include addressing their medical and psychosocial needs.15 ,16 The decision to refer a patient to palliative care is often a medical responsibility—that of the treating physician—who then leads the initial conversation about prognosis and treatment viability with the patient.6 ,8 ,13 ,17 ,18 In reality, however, conversations about referral and the transitions that follow involve formal and informal communication, and involve contributions from doctors, nurses and allied health professionals.5 ,19 The roles that different health professionals play in such contexts is not well understood, despite there being an important team-driven dynamic in terms of managing timely and effective transitions.20 Previous work has shown that some doctors rely heavily on nurses to directly prompt them as to the need for referral to palliative care.4–6 This largely informal delegation of responsibility provides little explanatory basis for teaching about, or streamlining, doctor–nurse professional practices around referral to palliative care. The roles and experiences of nurses thus need to be systematically examined in order to provide an understanding of current practice as well as best-practice guidance.
The nurse–patient relationship and emotional work
In exploring the transition to palliative care, a crucial aspect of service delivery is the nurse–patient relationship. Effective transitions to palliative care entail high levels of psychosocial as well as medical support,16 and nurses are well-placed to observe and support the psychosocial well-being of patients and families. This type of caring work has considerable potential for emotional burden and fatigue among nurses.15 ,16 Transitions to palliative care have been shown to be challenging for all stakeholders,1 ,3 ,8 and managing the professional–patient–family relationship in such contexts can be difficult.21 ,22 For nurses, displaying appropriate emotions is central to the nurse–patient relationship.23 Nurses regularly care for patients within intimate and emotional circumstances, and as such require and display distinct caring skills that are highly valuable in effective transitions.16 ,24 During the transition to palliative care, caring tasks can include verbal and body language, which reassures the patient, displays of sympathy and empathy, or holding the hand of a family member. Indeed, nurses have been shown to be more in tune with patients’ suffering and grief than medical staff in certain contexts.25–27 Less attention, however, has been focused on how nurses experience this kind of work within the context of ceasing life-prolonging treatment and transitioning to palliative care.23
Methods
This qualitative study was developed to explore a range of nurses’ experiences of caring in the transition to palliative care. The objective of the study was to systematically explore hospital-based nurses’ accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions. We define the transition to palliative care as the referral and transfer to the care of a palliative care service. This transitional process may entail initial or ongoing consultation with a palliative care specialist within the current clinical setting, but eventually involves movement to another setting under the care of a palliative care service. Nurses who were frequently involved in working with patients at the point of referral to palliative care were approached to take part in a qualitative semistructured interview to discuss their experiences and perspectives. The transition to palliative care is a particularly emotional, sensitive and difficult period for all stakeholders and face-to-face interviews have been shown historically to be a feasible and effective means of documenting experiences and perceptions of care in the last few weeks of life.28 ,29 Furthermore, a qualitative design allows documentation of complex personal and interpersonal challenges, conflicts and successes.30 The purposive sampling strategy was facilitated by Nurse Unit Managers who provided information forms to nurses who might be interested in participation. The information form outlined the aims and objectives of the project and described the background of the researchers, then invited potential participants to voluntarily contact the researchers directly if willing to participate. The information form also outlined that potential participants would be in no way disadvantaged by electing not to participate in the study and could withdraw their participation at any time, for any reason, without penalty. Of the 30 nurses who were approached, 20 agreed to participate. A range of areas of specialty were represented within this sample, including medical oncology, haematology, general medicine, radiation oncology and supportive/palliative care. The sample also included a range of levels of seniority, from junior and newly qualified nurses (n=4) and clinical nurses (n=10), to more senior coordinators and Nurse Unit Managers (n=6). There were 18 female and 2 male participants, aged from early 20s to late 50s. Participants provided written consent for the interviews to be digitally audio-recorded and transcribed verbatim and in full. The interviews took place in private office spaces within the hospitals, lasted between 30 and 60 min, and were designed to explore the following domains: the basis of nursing practice at points of transition; interacting with patients/family about palliative care and the end of life; intraprofessional and interprofessional dynamics evident in the transition to palliative care; and the emotional and interpersonal impacts on nurses at this point in care. We continued interviewing until the point of data saturation was reached.31 The researchers conducted member checking during the interviews by frequently summarising and restating participants’ views and experiences to enhance reliability through allowing the participant to confirm or query the researcher's understanding.
Analysis
A systematic thematic content analysis was conducted using NVivo 9 software, into which all interview transcripts were imported. The thematic analysis of the data was driven by a framework approach, which included the following steps: (1) familiarisation—in which the researchers reviewed the manuscripts; (2) identification of framework—key themes and issues identified around which the data was organised; (3) indexing—application of themes to text; (4) charting—use of headings and subheadings to build up a picture of the data as a whole and (5) mapping and interpretation—in which associations were clarified and explanations worked towards.31 Independent coding of the data was provided initially by members of the research team, which was then cross-checked to facilitate the development of themes, moving towards an overall interpretation of the data. Analytic rigour was enhanced by searching for negative, atypical and conflicting or contradicting cases in coding and theme development.31–33 Inter-rater reliability was ensured by integrating a number of research team members in the final analysis.31 ,34 All audio recordings, transcripts, coding reports and notes were retained and added to documentation of research aims, design and sampling, and recruitment processes and practices to form an audit trail.
Results
We report on the themes emergent from our systematic analysis of the interviews. All of the nurses interviewed spoke at length and in considerable detail of their experiences and views on caring for patients approaching the end of life, and their families. It was clear from the interviews that nursing work at this time had the potential to be emotionally draining, time-consuming and complex in terms of managing professional, interprofessional and nurse–patient relationships. Our analysis revealed four predominant themes: (1) in the nursing role in the transition to palliative care; (2) emotional support and effective transitions; (3) managing task-oriented nursing and supporting patients in transition and (4) the emotional burden of managing the transition to palliative care.
Professional roles and relationships: the nursing role in the transition to palliative care
The nurses offered detailed accounts of their perspectives on the nursing role and experiences therein during the transition to palliative care. This included the self-reported skills and approaches most valuable in caring for patients and families at this difficult time. Examples of indicative quotes related to participants’ views on the role of nursing in the transition to palliative care are provided in table 1.
Indicative quotations
A predominant theme throughout the interviews was the value in nurses’ input into initiating referral. That is, their position close to the patient privileged nurses in terms of noticing physiological or psychosocial issues, which may prompt timely referral. As such, a core element of nursing work in this context lay in the nurses’ ability to closely observe the patient and be proactive in terms of communicating with doctors or other health professionals within the department. Approximately half of the nurses talked about taking an active role in initiating or prompting referral, whereas the others felt less confident approaching doctors. This role was talked about as linked to the responsibilities of nurses in terms of patient well-being. The interviews revealed the nurse–patient relationship as key to the maintenance of psychosocial well-being, and this was particularly pertinent given the emotionally fragile state of patients and family members at this time. In this way, nurses, particularly compared with doctors, were viewed as holding the predominant responsibility for reassuring patients and their families, ensuring they were coping, and beginning to accept their diagnosis and prognosis. This responsibility was viewed by the majority of participants as a core value of nursing, and was highly valued. That is, their presence at the bedside enabled the development of positive relationships with patients, which were viewed as a crucial element of the care trajectory. The core values of nursing (ie, alleviating suffering, maintaining dignity and comfort) shaped nurse–patient conversations, which were a key element of ‘being there for the patient’. As discussed in more depth below, the position of nurses not only enabled them to observe patients (and thus help facilitate the initial referral to palliative care), but also to engage in emotionally supporting patients and families through the transition.
Talking to patients and families: emotional support and effective transitions
Communication with patients is crucial to effective referral to palliative care.9 ,10 ,13 Such communication can be fraught with difficulties, but can also carry significant meaning and value in terms of effective transitions. During the interviews, the nurses talked about their experiences talking to patients and their families, and the skills they used in order to manage such conversations to improve transitions. Indicative quotations from the interviews are provided in table 2.
Indicative quotations
Having a physical presence at the bedside was talked about as crucial to supporting the patient and family through the transition, particularly in terms of effective communication. Spending time with patients and families constituted a core task in smoothing the transition, both in terms of medical and psychosocial needs. All of the nurses indicated the significance of dual considerations when considering referral to palliative care, incorporating considerations of pain and symptom management and broader well-being (in a psychological as well as practical sense). The nurses viewed themselves as ideally placed to talk to patients and listen to any concerns during this transitional period. These included conversations about mortality and futility, as well as talk about family members’ capacity to provide care at home, or ongoing practical care needs. Effective transitions were facilitated by opportunities for the nurses to talk (and listen) to patients and their families beyond the initial point of referral and throughout the transitional period (often a number of days at least). Thus, in contrast to medically driven decisions about the need for palliative care, the transition was characterised by helping patients to understand their situation. In addition, the provision of emotional support was positioned as vital for family members, and the nurses were ideally located (and motivated) to offer such support. However, as discussed in the following section, there was a range of factors which impeded the nurses in providing sufficient support in their daily work.
Managing task-oriented nursing and supporting patients in transition
Being present for patients and their families through communication and emotional support was central to the nurses’ descriptions of effective transitions to palliative care. However, the majority of nurses also talked about the challenges of providing such assistance within their day-to-day nursing work. Time constraints were frequently discussed, with the majority of nurses noting the difficulties of providing emotional support for patients in addition to their other clinical and bureaucratic daily tasks. As shown in the indicative quotations in table 3, there was a common view that regular interactions with patients and families enabled ‘better’ transitions, yet this was undermined by workload. Moreover, daily tasks also impeded the nurses from actively working alongside doctors. This issue was talked about as critical, as a team approach to communication and supporting patients transitioning to palliative care was considered ideal. Daily tasks and patient loads constrained nurses from regularly attending doctor–patient consultations, which was viewed as affording the potential to best communicate with the patient and family about their transition. Ensuring that doctors and nurses were ‘on the same page’ was cited as crucial for best practice. Moreover, the ability to spend more time with doctors was also viewed as a vital part of passing on information about the patient/family circumstances to doctors. The intimate patient access afforded to nurses was significant, but limited in value without regular communication with doctors. Managing time effectively was talked about as stressful, particularly because supporting patients transitioning to palliative care necessarily entailed considerable emotional work.
Indicative quotations
Emotional work: the burden of managing the transition to palliative care
As shown in the sections above, nurses play a crucial role in managing the transition to palliative care. In this section, we explore the burden of such intimate involvement. The majority of the nurses’ interviews revealed the difficulties experienced as a consequence of nursing for patients transitioning to palliative care, as illustrated in table 4.
Indicative quotations
It was clear that the nurses empathised and identified with many of their patients, and experienced a range of emotions including sadness, grief, frustration and fatigue. Indeed, much energy was put into emotionally supporting patients and families, and in maintaining their own psychosocial well-being. The nurses talked about the challenges of managing their own mood and demeanour around patients. Displays of emotion needed to be constantly reassessed when working with patients within the same unit who may be approaching the end of life alongside those undergoing curative treatment. Balancing hope and futility, and the according expressions of emotion required considerable thought and attention.35 Indeed, the burden of such work was clear throughout the interviews. The maintenance of emotional composure was talked about as a day-to-day skill and challenge. The majority of the nurses talked about struggling with the extent to which they would (or should) get emotionally involved with patients and families transitioning to palliative care. Indeed, the majority of the nurses spoke at length about their own self-imposed rules and boundaries in terms of interpersonal connections, particularly in terms of managing the potential for compassion fatigue and/or burnout.36 ,37 Only a minority of the nurses viewed emotional work with patients as straightforward or easily managed. A key element of the emotional toll of this work lay in the responsibility the nurses felt to emotionally support patients and their families. That is, they felt a professional expectation to take on the vast majority of emotional support work. This pressure to enact emotional work was compounded by a perceived lack of emotional support for the nurses themselves.
Discussion
Ensuring timely and effective transitions to palliative care has significant benefits for patient quality and quantity of life, and for family members’ well-being.12 ,38 Nurses are crucial to such referrals.19 ,39 This study provides a means for better understanding the significant roles played by nurses in the referral and transition of patients to palliative care. The findings of this study demonstrate the unique access to patients afforded to nursing staff, in the structure of their role as well as emerging from the core values and practice of nursing. The findings also highlight the benefits of nurses who are oriented to providing psychosocial support for patients and families in transition. A key process identified here was interpersonal access to patients and their families. By being present at the bedside, and with a willingness to talk and listen, the nurses held the advantage of uncovering crucial information on the emotional and practical contexts of each patient. The benefits of such knowledge and understanding (particularly when communicated to the treating physician) was viewed as enabling the transition to palliative care (and planning therein) to be tailored to each individual patient.
The findings presented here highlight the importance of effective communication between health professionals for palliative care planning.1 While the nurses we interviewed talked about being well-placed to inform treating physicians around initiating referral, around half of the nurses lacked confidence in such communication. As has been shown in studies elsewhere,1 ,20 ,39 although nurses may be significantly involved in transitions to palliative care, there may be a lack of, or variability in, opportunities for them to contribute towards decision-making around referral, which is widely considered to remain within the remit of the treating physician. The self-reported data from this study highlighted nurses as well situated within the ward to gain unique knowledge and understanding around patient and family context. Yet, a number of practical and professional factors impeded nurse–doctor communication.40 As such, our findings support those of other studies that have highlighted the benefits of interprofessional communication and team-based approaches to referral, enabling nurses to have greater opportunity for input into often complex and ambiguous consultant-led decisions.1 ,20 ,41 ,42 It is likely that such approaches would improve referrals and transitions through more timely and better communicated referrals, and by placing more emphasis on psychosocial factors.
In addition to the potential for nurses to have significant input into decision-making around initial referral, our findings also reveal the critical roles played by nurses in operationalising the processes necessary for successful transitions.43 While it was clear that the decision to refer was led by the treating physician, the nurses in this study viewed tasks associated with managing the transition itself as primarily their own responsibility. A key element of this work was the ability to empathise and identify with patients and families. This management of emotion is an important nursing skill24 ,27 ,44 ,45 that is arguably under-recognised and underutilised in the context of referral and transition to palliative care. Nurses represent a significant resource in this area, and their expertise could be more actively drawn on by doctors and other health professionals to assist with positive professional–patient communication and negotiation. In contexts where doctors frequently struggle with breaking bad news to patients and their families,1 ,17 ,22 nurses can and do play a pivotal role in smoothing transitions and maintaining psychosocial well-being.46 However, while the values of nursing shape such expertise, nurses should not carry the burden of emotional work with patients in isolation. Ultimately, the interviews revealed the considerable burden of responsibility of nursing to maintain and manage the psychosocial well-being of the patient and family at the point of futility and transition to palliative care. Moreover, it was clear from the interviews that there was, at times, a perceived lack of support from other health professionals and the hospital in terms of supporting them in their work. That is, this important emotional work involved in helping patients transition to palliative care was viewed as predominantly the responsibility of nursing staff.
This study has several limitations. Although our sample of nurses includes representation of a range of specialty areas and levels of experience and seniority, it only captures the experiences of participants from two health services with public as well as private clinical environments in one Australian city. As such, our findings cannot be generalised to other nurses in other settings despite providing indications of themes and theoretical insights likely to resonate across other settings. Furthermore, the sample of nurses was self-selected. Our findings therefore may not represent the views or experiences of less-experienced nurses in these contexts or those with less interest in palliative care. Given the findings presented here, further research focused on the experiences of doctors, social workers, patients and families is required to provide a team-based understanding of negotiating referral and transition to palliative care. In practice, nurses can be utilised in a more formalised and systematic fashion in the context of potential futility and the need to topicalise palliation by shifting the focus away from purely ‘medical referrals’ and focusing on ‘team-based’ and ‘patient-centred’ timely transitions. Nursing staff also require support, given the emotionally challenging nature of their work, particularly in managing the potential for professional compassion fatigue and burnout.36 ,37 Supervision alongside a team-based approach to transitioning patients may better support nurses to emotionally as well as clinically support patients during this difficult time.
References
Footnotes
Contributors The project was designed and developed by all authors. Data was collected by AB and EK. Data analysis was led by EK and AB, with input from all authors. All authors contributed to the drafting and revising of the manuscript, and approved the final version of the manuscript.
Funding This work was supported by the Australian Research Council, grant numbers LP120200268 and FT100100294.
Competing interests None.
Ethics approval University of Queensland Human Research Ethics Committee.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.