Self-Care

Key messages

• Self-care plays an important role in helping palliative care professionals cope with frequent exposure to death and dying [1] to mitigate the risks of burnout, moral distress and compassion fatigue [2] for their wellbeing. Self-care is not only necessary for the maintenance of the health professional’s wellbeing, but it also impacts the quality of care provided to patients. [3,4]
• More recently there have been more studies examining different self care strategies to increase coping with death, reduce burnout and compassion fatigue. [1,3,5-7] However the level of evidence to guide the development of specific programs does remain fairly low.
• Those working in palliative care experience similar levels of burnout [8-11] and post traumatic stress symptoms [12] to other health care workers. [13,14] However, this does not stop the need to have protective strategies and self-care in place. [1]

Background

The challenges of working with patients, who are approaching death, and their families, may be rewarding both professionally and personally [15,16] but can also be associated with stress for clinicians. [13,17,18] The stress experienced by clinicians can lead to burnout, moral distress and compassion fatigue, that impact on clinical decision making, and can adversely affect quality of patient care through increase in errors [13] and has been associated with poorer general health status, and loss of staff. [14] This has implications across the whole health system.

Whilst it is often presumed that recurrent exposure to death and to the sadness and distress of patients and families is in itself stressful, working in specialist palliative care has not clearly been identified as more stressful than other areas of health care. [8-10] However the staff who have chosen to specialise in palliative care, [19] and their work environment may differ when compared to those who occasionally provide end-of-life care for patients in other settings.

Recent review of evidence in hospice and palliative care found that self-compassion among health professionals was positively associated with psychosocial and spiritual well-being of patients and health professionals themselves. [20] On this basis it was suggested that self-compassion, that is responding kindly and compassionately to one’s own suffering and failures, might improve capacity for self-care and decrease perceived burnout risk and secondary traumatic stress.

For non-specialists who are occasionally involved with end of life care, this role may be experienced as distressing and confronting. [21,22] Provision of palliative care may not be easy to accommodate within the clinician’s usual workload, and may also require a shift in goals and style of care. This can require different skills which non-specialists may find challenging to cope with. For staff working in residential aged care or other long-term care facilities, there are particular issues associated with providing palliative care. These can include the provision of futile and inadequate care that contributes to the stress [23] and the rapidly changing aged care environment. [24,25] This will be of increasing importance as the aged care sector becomes a more frequent place of death. There may be little organisational support or recognition of the stress associated with provision of palliative care and care for end of life patients and residents by non-specialist providers. Some of the settings in which these concerns have been identified include intensive care units, [26,27] oncology, [14] paediatric services, [28] general practice, [29] general wards, [30] medical, [22] nursing homes [28] and emergency work. [21] There is still paucity in studies examining the prevalence or significance of these concerns across the health care system though it is an increasing area of research.

The negative outcomes related to this stress make it crucial to ensure there are strategies in place to mitigate them. One key strategy is to facilitate self-care, defined as group of activities performed by an individual to promote and maintain personal well-being throughout life. [2]
 
The stress can lead to physical and psychological challenges that may impact on patient care. This is recognised in the Standards for Providing Quality Palliative Care for all Australians [31] Standard 13 ‘Staff and volunteers reflect on practice and initiate and maintain effective self care strategies’. This Standard requires the palliative care service culture and structure to provide education about potential effects and possible management strategies and opportunities to reflect about feelings related to interaction with patients and their families.

Evidence gaps

• The risk and protective factors in the palliative care setting are not well understood. More research is required in this area to provide evidence for strategies to prevent burnout. [8] Burnout has been studied the most with less known about the other aspects of stress such as moral distress and compassion fatigue though more studies are taking place. [16,32,33]
• The impact of self-compassion on relatives of hospice and palliative care patients has not been examined. [20]
• Compassion fatigue is a state in which the compassionate energy that's been expended has surpassed restorative capabilities that result from the relationship between clinician and patient. [34] Symptoms are similar to post traumatic stress. [35] There is not much in the literature about compassion fatigue which is also known as secondary traumatised stress, a concept arising from the field of trauma developed for emergency personnel and trauma counsellors. [36] Some studies provide evidence that compassion fatigue [32] and secondary traumatised stress have been associated with hospice workers, [37] Compassion fatigue is poorly recognised in nursing in general, [38] even though there is an impact on patient care when clinicians have a reduced capacity to make clinical decisions. [39]
• When a clinician experiences inability to act in a manner consistent with their own personal and professional values due to external constraints, moral distress can ensue. Less is known about the consequences and prevalence of such distress. A small survey identified that while there may be differences in perspectives and experiences, moral distress is a common experience for clinicians, regardless of profession [40] There has been discussion that moral distress is an unavoidable reality of palliative care and development of a conceptual framework to understand moral distress is needed. [41]
• There are some tools that can be used by health professionals to understand their needs in caring for seriously ill patients and provide structure for organisational training and support to manage the work. These include the Death Work Scale [42] that was developed to help palliative care professionals to better reflect their needs in facing death in their work and provide the self awareness to minimise the impacts that death work may bring. The Stamm Professional Quality of Life (PROQOL) measure [43] has been developed as a potential tool for assessing compassion fatigue and burnout. It has been used to examine the prevalence of CF in palliative care workers. [32] The most well known tool is Maslach Burnout Inventory (MBI) for assessing burnout. [44]
• There are work factors and personal characteristics that protect against stress. [2] A community study examining predictors of burnout, proposed that the 'contribution' of the individual (ie, person-variables) to the onset of burnout has possibly been underestimated and the role of working conditions (ie, environment-variables) overestimated [45] Correlations between the personal trait of attachment style and levels of burnout have been shown. [46] This is not limited to palliative care. 
• Various self care strategies have been studied with none shown to be more effective than the other. [4] There are some that may lead to a moderate reduction in stress at an individual level, such as meditation, [3] cognitive-behavioural training, mental and physical relaxation but more appropriately powered randomised studies are required to provide more understanding about specific interventions. [47] Strategies at the individual level such as taking responsibility for their own self care and self awareness, at the professional level such as training and skill building to deal with stressful situations particularly communication, and  at organisational level such as structured debriefing, mentoring, and professional supervision may also be needed to provide a comprehensive approach. [9]
• Whilst there is no evidence about the most effective self care strategy there are some studies that support the importance of self awareness as a component of self care. They report an association between greater levels of awareness and a health care professionals’ ability to maintain and manage emotional balance when working in difficult situations. [31,48]
• Resilience is the capacity to recover quickly from difficulties. There is literature within the palliative care setting that looks at factors which may enhance clinicians’ resilience, coping and professional survival by engendering changes in work structure and workload [6] and by building internal resources through personal nourishment and fostering emotional, supportive connections. [49] There are programs that have been used in oncology as well. [50-51]
• There are more studies looking at training for skill building as a professional self care approach. [6] A training self care module developed using an integrative model [52] was shown to be useful and operationally feasible. [1]
• Equally important in decreasing stress are organisational factors. This may be related to the palliative care philosophy, where nurses receive emotional support and recognition of their work by their team, by patients and their families. [19] The multidisciplinary decision making that occurs in palliative care may buffer against distressing aspects. [53] Organisations can take the lead in creating an environment that helps staff to reflect and develop coping mechanisms. [10] Changing work schedules can also reduce stress, but other organisational interventions have no clear effects. [47]
• Little evidence is available to guide the development of specific programs of support for clinicians involved in providing palliative care - whether specialist palliative care providers or others. Approaches such as communication training, [5] use of poetry, [54] mindful communication, [55] the Workplace Physical Activity (WPA) program, [56] the Meaning-Centred Intervention [57] have all been investigated as one-off strategies in palliative care, but were not able to clearly be seen to be beneficial to participants. There is the validated professional self-care scale that can be used in the assessment of palliative care professionals’ health. It contains three dimensions (physical, inner and social self-care) to provide an overall factor of self-care. [58] The results could be used to direct support programs.
• Concepts such as, coaching [59] and various types of peer support groups have not been well evaluated in palliative care. Clinical supervision appears to be an additional viable method of palliative care team self-care [60] and is an area ripe for research to explore clinical supervision as a potentially professionally enriching interaction. [61]
• Different disciplines have very different cultures and varied access to self-care opportunities. Whether specific disciplines are more or less at risk for burnout has not been investigated. More research is required but seems to be that clergy are exposed to similar trauma. [62] A study of active hospice volunteers found a low level of burnout for those who participate in a structured volunteer program and embrace self-care as a protective factor. [63] Further research of volunteers in other palliative care settings and ex-volunteers will provide more information about their experience of burnout and access to self-care.