Gregorio Zúñiga, McMaster University. Gregorio is a Pediatric Palliative Care Specialist working at the Quality of Life and Advanced Care Team (QoLA Care) at McMaster Children’s Hospital in Hamilton, ON. His research interests include grief and the relationship between suffering and quality of life and decision-making.
Groves, K. A., Adewumi, A., Gerhardt, C. A., Skeens, M. A., & Suttle, M. L. (2022). Grief in critical care nurses after pediatric suffering and death. Annals of Palliative Medicine, 11(6), 1888–1899.
Palliative care’s goal is to improve the quality of life by relieving suffering; at least, that is what every definition says. Being a core concept in palliative medicine, one would expect that we would have a common understanding of what suffering is. Yet, there isn’t a unified definition, leaving its meaning to different interpretations on when patients experience it, how we assess it and how we should approach it. Despite the uncertainty, the word suffering is so embedded in our lexicon that we use it liberally to counsel patients and families in life-or-death decisions, justify treatments like palliative sedation, avoid interventions like CPR, or describe why we experience moral distress.
In this article, Groves et al. showcase the grief experienced by critical care nurses after being exposed to pediatric suffering and death. Both positive and negative experiences were shared by participants, ranging from minimal or absence of grief reactions to intense moral distress with intrusive thoughts and memories that invalidated the care some participants provided. Some experienced growth and improved resilience, while others worried they were the source of the suffering. Coping strategies differed amongst participants; some chose to internally compartmentalize their emotions, while others relied on their support network.
This article helps to understand the impact exposure to suffering and death of children has on health care professionals. It acknowledges the individualized response practitioners experience. While there are positive outcomes, including job reassurance of purpose, the risk of experiencing moral distress that leads to emotional exhaustion and leaving the profession is always present.
Staffing shortages are currently affecting health care at all levels. Lack of purpose in one’s job and working in stressful environments have been some of the recurrent themes of why healthcare providers leave the profession. Experiencing the suffering and death of children can elicit strong emotions. As much as we cannot guarantee that every practitioner’s experience is positive, one cannot help to wonder what factors determine that some healthcare professionals find reassurance in their work when others struggle with these interactions and experience negative consequences.
A key takeaway from the article is that “[…]perceived patient suffering may compound or alleviate the level of emotional response dependent on perception”, and “grief was magnified when nurses […] perceived patient suffering”. This means that our perception of suffering, however we define it, affects how we respond to the situation. Our own biases on when and how children suffer may affect this perception without necessarily correlating with the presence or absence of patient suffering. This begs the question, who is really suffering, the patient or ourselves? A consequence of the lack of clarity on what suffering is and how we can objectively address it creates personal interpretations that bias our interactions and may hinder the care we can provide.
Deconstructing the concept of suffering requires a thorough analysis, ideally coming from patients and families, rather than making assumptions based on our perspectives. An excellent place to start is to begin a discussion around the following questions: what is the difference between pain and suffering? How does suffering relate to the concept of total pain? When does pain become suffering? What is the relationship between suffering and quality of life? And how does suffering affect decision-making?
Reflecting on these inquiries and having these concepts explored with patients and families might be a first step in preventing our biases from taking control during stressful clinical interactions and focusing on compassionate patient and family-centred care, which has been described to prevent and alleviate moral distress. By understanding what suffering is, we will be more capable of fulfilling palliative care’s goal of improving quality of life through the relief of suffering. It only gets complicated when we cannot describe precisely what we are relieving the patient from.