World Hospice and Palliative Care Day:
IAPC’s Special Feature on
Paediatric Palliative Care-8
About the Author: Ms. Anusha Cheekati, is the Head Nurse and a paediatric palliative care nurse at Sparsh Hospice in Hyderabad. She used to work as a paediatric ICU nurse before beginning her journey at Sparsh.
It is a well established fact that the patient and the family are considered to be a single unit in palliative care. As a recently practicing paediatric palliative care nurse, I believe that the paediatric palliative care community is specially drawn towards focusing on, and addressing the ‘empathetic’ medical issues of the child’s family, in addition to caring for the child. This special focus is warranted since families also most often tend to experience the physical and emotional pain that the child endures. This added layer of complexity to an already challenging situation, makes it difficult to treat the psychosocial concerns of the child separately from that of the family.
During my earlier tenure as a paediatric ICU nurse, I recognized the absolute and essential need for the treating team, especially the nurses, to be trained in communication skills and in their ability to provide basic psychosocial support to the child’s family, as this is the time when families are most fragile and vulnerable. Normal life trajectories dictate that children outlive the elders in their families. For most people, a reversal in pattern (where the elders outlive their children) caused by the death of a child either due to a sickness or an accident is simply unacceptable and unnatural. The emotional trauma that these families are subjected to is indescribable.
While treating a paediatric patient, one has to factor in the actuality that there will be several family members (parents, siblings, uncles, aunts, grandparents) who will have an equal influence and opinion in determining the child’s treatment plan. Innumerable members from the child’s family, who share an emotional connect with the child, tend to hover around the child and express the need to physically stay with the child during the course of the child’s treatment. This situation can be managed and controlled to an extent if the child is in an ICU, as ICU protocols allow for only parent to stay with the child. The scenario get challenging when the child is in a palliative care facility. Medical teams working in such set ups, especially the nurses need to have an enormous amount of patience, compassion and commitment to handle the multiple requests, the possible collusions, and also be able to effectively address the psychosocial issues of every member of the child’s family.
It is important to note that while treating a child in palliative care, the nurses must also be sufficiently empowered to understand and address the child’s concerns by just gauging the child’s expression or by reading other non-verbal cues.
I cannot stress enough the need for a nurse working in paediatric palliative care to consciously practice Self Care. Caring for a paediatric patient is stressful enough; paediatric palliative care nurses are even more distressed as one is not organically engineered to accept the loss of a child. In addition, these nurses are uniquely placed to comprehend and appreciate the intricate inter-wovenness in emotions that transpire between the child, the parents, the extended family and also to themselves. Paediatric palliative care nurses therefore tend to experience severe compassion fatigue, have higher rates of burnout and end up suffering alongside the family as they typically stretch themselves beyond their professional boundaries and personalize the pain.
A paediatric palliative care nurse will therefore need to be upskilled to render quality psychosocial care and transition effortlessly between the role of a skilled professional and a compassionate health worker; in addition to delivering traditional medical care. Attention must also be paid to ensure that these complex emotions are recognized and addressed, by being mindful of one’s professional boundaries and by practicing compassion without becoming empathetic.