The past decade has highlighted the need to humanise health care (Health Foundation, 2014; Health Education England, 2019; West, 2019). Launched in 2012, the Compassion in Practice framework was developed for nurses across all specialties in England and identified the six core qualities—care, compassion, competence, communication, courage and commitment—to underpin the values of health care for the benefit of staff and patients alike (Cummings and Bennett, 2012). The framework was significant given the findings of the subsequent Francis report (2013), which highlighted the reciprocal relationship between poor staff care and poor patient care (related to a lack of action on staff concerns). The report concluded with a recommendation for a change of culture within healthcare services on governance, organisational and profession-specific levels of healthcare services.
Concurrently, directives specific to palliative nursing encouraged staff to address bio-psycho-social aspects of palliative healthcare (Marie Curie, 2017; Macmillan Cancer Support, 2017; NHS England, 2019).
However, in spite of these initiatives, it remains clear that patient care does not translate into staff care and palliative nurses appear to care very little for themselves (Adib-Hajbaghery and Yamini, 2010; Ross et al, 2017; Watson et al, 2019).
Although working in a stressful role does not necessarily lead to psychological distress, the levels of stress, depression and anxiety associated with palliative nursing care are high (Arnold and Boggs, 2019; Watson et al, 2019; Kamal et al, 2020). Daily tasks can impact directly on both professional ability and personal capacity, resulting in sickness and absence, occupational health referrals for specialist intervention, as well as staff-retention problems, ultimately impacting on overall service delivery and effectiveness (Health Education England, 2019).
The problem is accentuated by the unwritten belief held by nurses, and by employing institutions, that the pursuit of excellence in service delivery and outcome necessitates a level of emotional detachment (Gerow et al, 2010; Wenzel et al, 2011; Health Foundation, 2014).
However, even though staff continue to express the need for more supportive work environments for themselves, it remains largely invisible within palliative settings and in spite of good intentions, existing management strategies, be they local or national, neither prevent nor do they address the problem (National Institute for Health and Care Excellence (NICE), 2004; Holland and Neimeyer, 2005; Wenzel et al, 2011).
This article aims to highlight what is known regarding the practical and emotional challenges for palliative care nurses, considering the complex practicalities of the role and additional stressors such as moral distress, burnout, compassion fatigue and death anxiety. It offers recommendations to services to support staff at an organisational as well as individual level, to help create a more supportive workplace for staff and patients alike. It is a follow-up to previous research on working in palliative and end-of-life care (Hussain, 2019; 2020). The discussion will consider nursing roles in all forms of palliative care, across primary, hospital and community settings.
Challenges facing nurses working in palliative care services
Although research in the area remains limited, available studies suggest a number of core challenges facing palliative nurses. These include issues such as the practical challenges of palliative nursing, as well as psychological stressors such as moral distress, burnout, compassion fatigue/vicarious trauma and death-anxiety, with findings highlighting related levels of distress and anxiety, staff sickness, staff retention levels and ultimately, quality of patient care.
Core palliative nursing skills
Palliative nursing requires an extensive skill base. Nurses are involved in assessing, planning and providing physical, emotional, psychological and spiritual care to patients and their carers. Areas of expertise may include pain/symptom management, knowledge of end-stage disease processes, familiarity with spiritual and cultural awareness of loss and grief in patients, patient education and advocacy, as well as ethical and legal considerations. The diversity of the role means that compassion, sensitivity and good communication skills are vital. Consultations with this patient group will necessarily involve talking about death and dying, assessment skills to identify treatment need as well as implementing co-ordinated care plans across a number of departments (Royal College of Nursing (RCN), 2016; Marie Curie, 2018; RCN, 2019).
In highlighting the subtleties of palliative nursing care, Husaini (2014) made the important point that palliative nursing is a continuous process and involves providing tangible and intangible care where the tangible care is carried out by nurses regardless of the context and intangible care includes those actions that are adapted according to the contextual or cultural circumstances of a particular setting. Given the complexity of the role and the extensive skill set, there is clear potential for both personal and professional challenges.
Professional challenges of palliative nursing
Early studies exploring the challenges of palliative nursing concluded that nurses wished to provide quality supportive care for patients and their families but unconducive environments and inadequate relevant training hindered their efforts. Nurses cited a number of practicalities related to their role as central to this problem. These included issues such as time, limited resources, a lack of control related to team dynamics coupled with a lack of cooperation and support, as well as a lack of knowledge of cancer treatment options. Furthermore, although the role necessitated emotional support of patients and families, this in itself proved to be a source of conflict and stress for nurses due to the related conflict of roles. Findings suggested that these issues created obstacles for nurses to offer ‘complete’ care (Berterö, 2002; Hudson et al, 2004; Mohan et al, 2005; Peters et al, 2012).
However, Wallerstedt and Andershed (2007) found that nurses did experience satisfaction through contact with patients and relatives, and functioning collegial co-operation, in addition to the knowledge, experience and personal growth the care had given them. This suggests that the personal patient/team interactions go some way to bridging gaps and managing staff concerns where wider service culture failed to deliver.
Although research indicates issues around structural organisation and departmental continuing professional development/training programmes, these issues may in some part be expected in such a diverse role, suggesting a closer examination of the ‘reality’ of the job description as it exists presently—with organisations being aware of issues at the coalface for individual staff teams and related barriers to job satisfaction (Hudson et al, 2004; Ploeg et al, 2007).
Personal challenges of palliative nursing
The source of much debate, issues such as moral distress, burnout, compassion fatigue and death anxiety are, of course, applicable to nurses working in a range of other healthcare settings and research specific to palliative settings is limited. As such, psychological challenges specifically facing palliative nurses and recommendations for their management have been defined in terms of context-specific/situational factors (Melvin, 2015)
Moral distress
An early definition of moral distress described it as the physical or emotional suffering that is experienced when constraints (internal or external) prevent one from following the course of action that one believes is right (Pendry, 2007: 217). Although that general description means the term may apply to any manner of settings, Morley et al (2019: 2) offered a contextual description, suggesting it is a consequence of the experience of a moral event and the experience of ‘psychological distress’, and a direct causal relation between those two points together are necessary and sufficient conditions for moral distress. In considering both descriptions, we may understand the potential internal conflict of palliative nurses whose role it is to support patients to die and die well; both concepts that contradict our ‘innate’ beliefs around attending healthcare services—to give us health and keep us from dying.
Pendry (2007) found that 15% of nurses resigned from their roles due to moral distress. Building on those role requirements, she identified that moral distress was due to an imbalance between increased responsibility and lack of autonomy, noting that moral distress was instead mis-labelled as stress, burnout, emotional exhaustion and job dissatisfaction. This description hints at the inadvertent marginalisation of the effects of the psychological consequences of the role. Pendry (2007) concluded that collectively these individual issues were potentially symptomatic of moral distress and that increased education in recognising moral distress and improved training and practice environments to reduce effects at an organisational level was needed to increase job satisfaction, improve staff retention and ultimately patient care (Brazil et al, 2010; Maluwa et al, 2012; de Veer et al, 2013).
Burston and Tuckett (2013) found that moral distress was influenced by individual characteristics, site-specific systems and/or broader external influences, concluding that it resulted in reduced quality of care and work satisfaction for staff, leading to physical and emotional illness, burnout and staff turnover. Again the study highlighted the important association between psychological effects of the role and the resultant consequences for service delivery. To this effect, they advised developing measures around improving ethical understanding, ethical skills and communication, provision of morally sensitive support mechanisms, individual engagement in critical self-reflection, interdisciplinary dialogue and education, collection of narratives or storytelling, mentorship and enablement of a supportive organisational culture.
Although early studies considered the impact of external psychological factors, Rushton (2017) focused on the impact of internal psychological sophistication/capacity. She argued that the problem may be tackled by supporting staff to become more morally resilient, which in turn would encourage self-regulation and self-awareness and an ability to recognise when integrity is threatened. She felt that this would further influence clinical service delivery by teaching staff self-discipline, how to listen and respect views that are different from their own, not to exert personal agendas, and to be able to articulate a point of view in a coherent, ethically grounded way.
The findings present a distinct challenge for palliative nursing. As mentioned previously, the complex nature of the role itself requires extensive levels of expertise in areas beyond nursing and although consideration of both external and internal psychological dynamics is core to facilitating care, the additional focus will likely increase not only the emotional burden but also the stress related to practical application of the new and necessary skills. This, in addition to pre-existing problems regarding practicalities of the work environment itself, may result in a somewhat arduous management strategy.
Burnout
Burnout is defined as a prolonged response to chronic interpersonal stressors on the job, involving three dimensions: an overwhelming exhaustion, feelings of cynicism coupled with detachment from the job, and a sense of ineffectiveness coupled with a lack of accomplishment (Maslach and Leiter, 2016: 103). Keidel (2002) reported that palliative nurses are considered a high-risk group for burnout and as such are more likely to leave or take a sabbatical from their role. Known to accompany compassion fatigue, its prevalence is moderated by types of service provided, principal institution, practice status and professional affiliation (Slocum-Gori et al, 2013; Parola et al, 2017; Rushton, 2017; Kamal et al, 2020).
In addition to its link with compassion fatigue, Whitebird et al (2013) and Parola et al (2017) found there to be a link between burnout, psychological morbidity and working hours. Coping mechanisms such as physical wellbeing, clinical variety, setting boundaries, transcendental meditation and quiet reflection, passion for one's work, realistic expectations, remembering patients and organisational activities were associated with reduced levels of burnout.
Payne (2001) suggested that, in order to reduce development of burnout, organisations needed: staff training in counselling skills, monitoring staff conflict, implementing stress inoculation training (a form of cognitive behavioural therapy used to treat post-traumatic stress disorder (PTSD) through recognition and changing of related negative beliefs) and to teach appropriate use of coping skills. Findings also recommended monitoring vulnerable groups of hospice staff such as unqualified nursing assistants and qualified nurses in management positions who may be exposed to the same levels of distress as colleagues but have less access to formal support, teaching and training around the personal and professional impact of working in palliative services.
Kase et al (2019) found that distress about co-workers, emotional depletion, social isolation and working with patients where life-prolonging activities were not introduced were also significant determinants of burnout.
In exploring more personal management strategies, Holland and Neimeyer (2005) explored how factors such as spirituality and level of training may buffer the stress of working with terminally ill clients and their families using the Daily Spiritual Experience Scale (Underwood and Teresi, 2002) where spirituality is understood as attempting to ascertain a sense of meaning and reach cognitive mastery over events (Holland and Neimeyer 2005:174) resulting in seeing their experiences in a positive light. Findings revealed that daily spiritual experiences may mitigate physical, cognitive and emotional forms of burnout in the workplace. Further, a negative correlation was found between the amount of end-of-life training received and burnout in the physical and cognitive domains.
In relation to this, Ablett and Jones (2007) explored why, although palliative care nurses experienced similar levels of stress compared to cancer nurses (in contrast to most research), palliative nurses had lower levels of burnout, concluding that palliative nurses appeared to impute a greater sense of meaning and purpose to their work. In spite of the positive consequence for palliative nurses regarding burnout in this final study, we see with research in this area the creation of an oft-seen vicious cycle of vulnerability. Staff commitment to ‘being there’ for patients who are at their most vulnerable results in a increase in their own vulnerability, which transpires as a result of their increased need to support their patients. Coupled with the lack of control, staff themselves have to access support, and the cycle is self perpetuating. Nursing staff feel the only positive option to counter this is to ‘throw themselves into their patient work’ hoping to ameliorate their own vulnerability by gaining strength through increased patient support. In reality, the subsequent link to compassion fatigue suggests this to be a counter-productive response.
Compassion fatigue
Compassion fatigue (also known as vicarious trauma) is described as reduced empathy as a result of exposure to ongoing suffering accompanied by hopelessness, a decrease in experience of pleasure, constant stress and anxiety and a pervasive negative attitude (Peters, 2018). It is also understood to be a natural consequence of caring for clients who are in pain, suffering or traumatised, which clearly includes palliative nursing (Sabo, 2006)
Cross (2019) identified five elements contributing to compassion fatigue: empathy imbalance resulting in role confusion and blurred boundaries, diminished job performance, increased neglect of personal physical health needs, an inability to share in suffering—all beyond the healthcare context leading to increased emotional isolation and poor judgement in daily duties and spiritual support due to emotional disconnection.
An early prevalence study by Abendroth and Flannery (2006) investigated the relationships between nurse characteristics and compassion fatigue risk. Findings revealed that 78% of the sample was at moderate to high risk for compassion fatigue, with 26% in the high-risk category. Determinants of compassion fatigue included trauma, anxiety, life demands and excessive empathy (leading to blurred professional boundaries), levels of work-related loss, distress regarding clinical cases, physical exhaustion and personal loss, with levels of experiences of palliative settings having little effect. Recommendations included specific strategies to facilitate preservation of the nurse's ability to cope such as developing supports, personal awareness, refinement of resiliency skills, self-care strategies, assertiveness skills, debriefing sessions, spirituality and the ability of the nurse to say ‘no’ (Abendroth and Flannery, 2006; Wenzel et al, 2011; Melvin, 2015; Kase et al, 2019).
These studies raise an important question around recruitment and interview processes and not only considering assessment of psychological intelligence and resilience but also self care strategies pre- and post-interview.
Death anxiety
Death anxiety is described as a feeling of dread, apprehension or anxiety when one thinks of the process of dying and one's own death (Peters et al, 2013). Shorter and Stayt (2010) reported that death anxiety in nurses is often compounded by the fact that grieving and feeling sad over patients' deaths is sometimes considered a sign of weakness and professional incompetency as reported by many healthcare providers. As such, staff have no opportunity to process the experience, resulting in internalisation of those thoughts and feelings and in the development of death anxiety. This suggests, as mentioned earlier, that emotional detachment is a ‘necessary part’ of palliative nursing, allowing nurses to carry out their duties.
Gerow et al (2010) carried out a study of nurses' experiences of patient deaths and found that nurses developed what they described as a ‘curtain of protection’ to hide their emotions and grief in order to be able to continue their work. They identified four ‘beliefs’, which informed staff experiences and personal management of patient deaths. These were: reciprocal relationship transcends professional relationship, initial patient death events are formative, nurses' coping responses incorporate spiritual world-views and caring rituals and remaining ‘professional’ requires compartmentalising of experience.
Although it is possible to see the functional aspects of these outcomes, they inadvertently (and erroneously) feed into the idea that carers do not require care, potentially creating patients for other (psychological therapy) services.
Studies also found that factors such as age, death experience, life experience, clinical specialty and personal attitude all impact on the onset of death anxiety. Deffner and Bell (2005) found that nurse comfort level in the communication with patients and families is adversely affected by an increase in the nurse's own death anxiety and positively affected by exposure to communication education. Similarly, Lange et al (2008) found a correlation between experience and management, with experienced nurses having more positive attitudes toward death and caring for dying patients.
In two separate reviews, Peters et al (2012; 2013) found an inverse association between nurses' attitude towards death and their attitude towards caring for dying patients. Younger nurses consistently reported a stronger fear of death and more negative attitudes towards end-of-life patient care due to lack of personal experience and professional exposure. Gama et al (2012) used the concept of escape acceptance (that is, seeing death as a better alternative to a painful existence) to understand variations in the prevalence of death anxiety and found that older nurses and nurses with more work experience had higher escape acceptance. Relatedly they found that female nurses had higher religious acceptance than males (ie accepting death as a gateway to a better afterlife).
Although studies indicate prevalence and patterns of death anxiety, they all highlight a widespread absence of necessary support and training for nursing staff, not only with regard to practical nursing knowledge on issues around death and dying but also their own capacity to manage an issue that we all have in common. It appears that the core issue of learning about death and dying is notably unavailable for palliative nurses themselves.
To sum up, we can see how the practical role and psychological aspects of palliative nursing have an ongoing impact on each other, further affecting both the personal and professional lives of staff as well as patient care. Although the research consistently shows that there is a higher risk of a negative impact for nurses in a palliative setting per se, it also suggests they are more able to manage these problems in comparison with general nursing colleagues. This appears to be, in large part, due to palliative care nurses having more support (Boyle, 2011), but consistency and accessibility to such support across and within palliative services has yet to be ascertained.
Recommendations for palliative services
In drawing on research outcomes and the related gaps in staff care, the following recommendations are proposed to increase support for palliative nursing teams:
Extended level 2 supervision (monthly)
It is clear that clinical nursing supervision positively influences professional and personal wellbeing to support staff in managing many of the practice-related issues highlighted above (Bégat and Severinsson, 2006; Ali, 2017). Although level 2 supervision is currently centred on cancer services, it is arguably applicable to staff in all palliative services (NICE, 2004; Macmillan Cancer Support, 2021). Furthermore, this support system is limited to level 2-trained staff, thereby excluding a number of potentially vulnerable groups of palliative healthcare staff/nurses (Payne, 2001). In order to capture the impact of the more emotional aspects of this work, regarding not only the nurse-patient relationship, but also the dynamics that may affect service delivery, service engagement and supporting patients through their distress and fears of a terminal diagnosis, clinical nursing supervision would be complemented by an extended level 2 supervision model. This would offer greater flexibility to include newly qualified as well as inexperienced staff, so all staff can access support equitably.
Reflective practice (monthly—alternating fortnight with the above)
In addition to existing professional practice supervision, it is strategic to add reflective practice sessions. This would enable staff to develop self-awareness skills and emotional intelligence, resilience and ego-strengthening, in turn improving related skills for managing practical and emotional challenges (Senediak, 2013; Salins, 2018).
Access to on-the-spot debriefs (individual request)
This would be a helpful addition, given that palliative teams often experience a shared, traumatic death that in turn can impact on whole team morale and functioning if there is no opportunity to manage it within a suitable time frame. However, this should be open only to staff who self-identify this as a personal need rather than a standard response to teams—which has not been shown to be productive (Regel, 2007)
Creating self-care in healthcare environments (ongoing)
This recommendation refers to utilising psychological theory to create a psychological milieu in healthcare environments (Tanja-Dijkistra and Pieterse, 2011), such as making ward environments more sensitive to patients, carers and staff needs by layout, communal spaces, responses to ward deaths etc, through patient information and staff training on psychological aspects of the situation. For example, North East London NHS Foundation Trust clinical health cancer services offer regular, brief (10-15 minute) mindfulness sessions to staff, allowing them an opportunity to stop and re-centre their focus through self-soothing and self-awareness techniques. This is a simple step that staff have found to be effective in coping with the daily routine of working with dying people. A more structured and directed approach to developing the ward environment would impact on the practical and emotional challenges mentioned above.
Recruitment (ongoing)
It is also helpful to consider the personal character specifications required when advertising palliative nursing roles and assessing at interview for resilience, ability to manage existential issues, coping and personal strategies for self-care so staff appreciate that the role will have an impact on their lives, as well as demonstrating that support and recognition of that problem exists from the outset.
Team induction (ongoing)
Including teaching sessions on the psychological aspects of death and dying from patient perspectives, consequences for professionals as well as exploring psychological aspects of various illness trajectories (where relevant), as a standard part of basic induction training for palliative staff.
Barriers to progress
Undoubtedly, the above recommendations raise the questions of time, cost, disruption to service delivery/shifts and the benefits to overall service delivery. However, if we consider the time lost in having to deal with the consequences of staff retention, absences and the impact on overall healthcare delivery and outcome, we can see that the time taken here may ultimately prevent a greater long-term problem. Burston and Tuckett (2013) make the point that only by engaging in such recommendations, can we generate the evidence about what really works.
Conclusion
Working in palliative care services has an impact on the personal and professional lives of nursing staff. Studies suggest that the complexity of the role leaves them to be at risk and suffering from moral distress, burnout, compassion fatigue and death anxiety in addition to struggling with general systems-related challenges of palliative healthcare. Current government guidelines have recognised the impact of such problems on wider service issues, such as overall quality of patient care and related staff retention. A number of interventions have been recommended, encouraging organisations to act at both institutional and profession-specific levels in order to reduce the negative impact of challenges and support staff to continue to deliver outstanding care.
KEY POINTS
- Recent initiatives have brought about an increased focus on palliative care and end-of-life care, with an extended and evolving role for palliative nurses
- Palliative nursing has numerous personal and professional challenges that are specific to the role
- These challenges have a direct impact on staff wellbeing and ultimately on staff retention
- This article presents a number of recommendations palliative services may consider in order to address these issues
CPD reflective questions
- What personal support systems have you developed for yourself at work?
- Are you aware of how to access staff support within your service?
- If no support is readily available, can you identify a forum to address this need?