Working in palliative and end-of-life settings where caring is predominantly for patients nearing the end of their life brings the health worker closer to some of the components of emotional pain. While emotions are invisible, the behaviours that underpin them are overt. It is possible that the same behaviour (for example, crying) can be provoked by different emotions; therefore, it is important that clear distinctions are understood. This column discusses the complexities of emotional pain, some of the main emotional components, their triggers and how to accurately interpret them in order to fully understand the patient's situation.
The components of emotional pain are multi-faceted (Figure 1) and impact the overall wellbeing of patients and their relatives at the end of life. When patients are being cared for at home, community nurses may encounter some, if not all, of these emotions.
Let us consider a case. Brodie was a 34-year-old man who was given a poor prognosis of a few months' life expectancy by doctors following a diagnosis of lung cancer with cerebral metastases. He had responded well to radiotherapy initially, but his condition was deteriorating, with episodes of confusion and headaches. In terms of his socio-nursing history, Brodie had experienced urinary continence for the first time in his life, with limited unsteady mobility. He was frightened of dying but stayed strong for his wife Jodie; they had no children. Brodie's parents had gone through a bitter divorce and used to visit his home separately. They felt their divorce had contributed to their son's suffering and lacked joined-up parental love and care. On the other hand, Jodie felt helpless at home with her husband, as she felt she was not able to care for him alone. She was also angry with him for ‘doing this to us’, and felt that he was too young to be helpless and dying, and not pursuing all their dreams (travelling, starting a family and pursuing a career).
For community nurses, Brodie, Jodie and Brodie's parents would present the challenging components of emotional pain in palliative care. For the parents, there is guilt (self-blame), anger (blaming each other), loss of intimacy and remorse. To understand Brodie's situation, it is important to appreciate his feelings and thought processes. Fear of dying is a well-known emotion and can be attributed to the fear of the unknown (Parkes, 1978). The indiscriminate nature of death compounds this fear to make it a major source of anxiety, an emotion expressed by those who are dying (Parkes, 1978). Equally, Jodie was frightened of Brodie's impending death and did not want to confront it alone, so she invited her mother to move in with them. While this helped address her own anxieties, for Brodie, the presence of his mother-in-law meant he could not have quality time alone with Jodie, which led to perceived loss of control, meaning and intimacy.
Jodie felt angry and guilty for not being able to cope with her husband's illness at home. This anger could be argued to represent a multitude of issues: unfulfilled goals and ambitions, not sharing love as a married couple and ending of continuing social/family bonds. Guilt, remorse and unresolved anger tend to linger, and Beauvoir (1966) stated that, when someone you love dies or is dying, you pay for the sin of outliving them with severe regret.
Community nurses caring for Brodie noticed that he seemed particularly low in mood every Tuesday and, over time, it seemed increasingly like depression. He would break down and cry a few times on that day. It was not immediately clear why this happened, until Becky, an experienced communication nurse facilitator, visited Brodie and found out that Tuesday was the day he had been told of his poor prognosis. Becky understood that Brodie was not particularly upset about the prognosis, but by the rushed manner in which it was delivered to him at the hospital, coupled with the lack of opportunity to ask questions. He was left with the impression that there was nothing the consultant could do for him. It was true that there was nothing medically in terms of hope for a cure, but Becky was on hand to reassure him that there was plenty more that palliative care could offer towards his physical, spiritual, psychological and social comfort. It is important to view emotional pain as a sum total of all the other dimensions of the patient (Figure 1). This is also true for the patient's family and relations.
Although Brodie and Jodie were together, there was loss of so many things, including control, the ability to work towards future goals, their married life and the possibility of starting a family. For Brodie, there was gradual loss of independence (for example, he had a catheter in situ) and more abstract things, such as certainty, confidence, predictability and clarity of thought. It is important to understand that dying is characterised by progressive loss of control over life and one's priorities. As Brodie was forced to give up each aspect of his life, community nurses under Becky's leadership were able to restore some aspects, such as self-esteem and hope of comfort and support.
Understanding emotional pain
To understand emotional pain is to appreciate the sum total of the emotions experienced by the patient's relations, as well as the complexity of these emotions. Emotions are intertwined and can compound each other as they surface. Therefore, it is fundamental that community nurses do not only focus their care on the patient's needs, but also seek to understand the impact of patients' emotions on their relations and vice versa. Community nurses' communication skills are vital in developing trusting relationships with both the patient and the family. Understanding the family's emotions and, in particular, Jodie's in the present case, meant that the community nurses had to gather information about the family's strengths and threats, the resources they need, previous coping mechanisms and their expectations. For nurses, using a team approach means that no single professional is left to manage such care interventions alone. Working within a team can be a source of much needed support for community nurses, who work as guests in patients' homes. Loss that leads to emotional pain is experienced by anyone regardless of their socio-economic status, gender or sexual orientation. Therefore, to fully understand emotional pain, it is paramount that cultural, religious and genetic influences are taken into account when providing palliative care.
Conclusion
It is important to remember that emotional pain is at best complex and at worst subjective, which means that community nurses need to engage in a person-centred individualised holistic approach to caring for dying patients in the community. This approach would require all the skills possible to ensure a dignified death: communication, empathy, clinical knowledge and evidence-based care. As health professionals, it is also critical that we continue to be sensitive to each other and show appreciation for each other's contribution. In this way, we may help buffer against the negative effects of working with patients' emotional pain.