An unnoticed collateral damage
– Dr. Spandana Rayala, Hyderabad
Palliative care is probably the only branch of medicine which includes family members, immediate and extended, in the context of delivering holistic care for a patient. As the science of medicine progressed and health care became more institution centric, the existence of families and it’s dynamics has either fallen out of sight or was left largely unrecognized by the health care workers. The health workers in the communities / grassroot level workers, are probably the ones who are most aware of the impact a family can have on the health of their loved one, positive or negative. Despite these challenges, palliative care ideally works towards ensuring that this important aspect of the patient is included in the care delivery or towards remedying that.
My experience has taught me that the one thing that might seem very challenging to even a seasoned palliative care professional, is when they have to communicate with children. I am not referring to those children who are directly affected and are in need of palliative care; I am instead talking about the one’s in the fringes, those who are unseen, unheard and mostly forgotten – The Siblings.
It is not an easy task for the Palliative Care physician to begin communication with the medically unaffected children. Where does one start? These children are mostly unavailable and difficult to access as they are either at school, or working (read child labour), or sent off to live with grandparents or extended family, or simply left at home when the patient has to come to hospital. On those rare occasions when they are brought to the center, they are a silent witness to the anguish of their sibling and the distress of their parents. This experience is enough to press the “Mute Button”.
We, as health care workers, are so focused on addressing the issues of the affected child and the parents, we are left with little emotional energy to focus on the sibling. Where do we find the time to explore the relation of our child patient with the sibling (younger or elder), and to assess what they understand and how all of this is affecting them at home and outside?
When we open the Pandora’s box, even though some stories are heartwarming, many are gut-wrenching. Below are a few instances which further demonstrate this.
- The anguish of a child who had not seen his mother and sister for two years due to the COVID pandemic, while the sister was receiving chemotherapy 600 kms away from home.
- The sacrifice of an elder brother who had to give up his education to help his mother in caring for his two sisters who have a neurological condition.
- The emotional turmoil of a younger sister who refuses to call her father ‘papa’ because she hardly saw him through her sibling’s treatment.
- The yearning of a child wanting to go home so badly despite being in severe pain because they miss their siblings.
- The fright of a child who was crying while hiding from her mother because she had witnessed the death of a few children in the cancer ward and was worried that her brother might die of cancer too.
- The anxiety of a sibling when she learnt that her mother didn’t really care much for her and that her mother wanted to kill herself if her brother died of cancer.
These examples of real life demonstrate and bring to the forefront some of the various issues that the siblings of our child patients’ face:
- Loss of education
- Lack of security of food and shelter
- Neglect and abuse
- Loss of peer contact
- Unstable homes
- Effects of financial burden on the family
- Varying behavioural issues
The intention of putting into words these thoughts is simply to emphasize that children, especially the siblings of the child patient, often go ignored, even though it is not a conscious decision by our palliative care colleagues. This is unfortunately a high priced collateral damage we impose without even realizing so. So, the next time we see a child / sibling accompanying our child patient, let us take a moment and make the effort to establish eye contact, build rapport and use that connection to explore their thoughts and life. We owe it to them!
About the Author: Dr. Spandana Rayala is a Pediatric Palliative Care Consultant at Pain Relief and Palliative Care Society, Hyderabad.