Grey Matter Matters – Meaningful Experiences in Neuro-oncological PPC
– Paediatric Palliative Care Team, TMH Mumbai
Brain tumours are the second most common type of childhood cancer. Prognosis tends to vary across the different paediatric age groups, based on the type and the site of the lesion. However, despite several recent advancements in treatment modalities for these tumours- surgery, radiotherapy, chemotherapy, etc.; several children often progress to an advanced stage due to the dissemination of their cancer, and are thereafter on best supportive care by the Paediatric Palliative Care (PPC) team.
Compared to children with other solid tumours and haematological malignancies, children with brain tumours receiving palliative care often tend to progress slowly and present with a very high symptom burden during the course of their illness progression. Various symptom constellations based on the tumour location and sometimes post-surgical management include- pain, nausea, vomiting, constipation along with other neurological manifestations such as paralysis, cranial nerve deficits, recurrent seizures, dystonia, etc. They may also show behavioural changes such as crying spells, irritability, lethargy, fear, anxiety or bad dreams. And during the latter stages of the disease, they often become fully bed- bound and require support of feeding tubes, tracheostomies and prevention of spasticity and bedsores. Effective management of these physical symptoms by the PPC team with drugs like corticosteroids, antiepileptics, anti-emetics, etc. along with physiotherapy and other allied modalities helps reduce the morbidity and the need for frequent admissions to the emergency department.
However, beyond these physical symptoms, there are several dimensions to the difficulties faced by a family with a child suffering from brain tumour. Caregivers of the child may face physical, emotional, spiritual and financial distress. Caring for a physically dependent child can cause fatigue. Caregivers may have disturbed sleep, decreased appetite and feelings of worry, guilt, fear, anger and sadness. The fluctuating nature of the course of illness with fluctuating levels of consciousness of the child can lead to a lot of uncertainty and be very distressing for the family. Feeding can be a major concern especially when the child is not conscious and steps like discussions with family about risk and benefits of nasogastric tube insertion should be done well in advance. The need for diapers, feeding supplements, expensive antiepileptics may add to the financial burden. Identifying caregiver burnout and providing respite may help the family cope with the situation. Keeping in mind the difficulties in prognosticating children with brain tumours, discussions about anticipatory symptoms and end of life care with the entire family should be conducted by creating a safe environment where the caregivers and siblings can share their concerns with the PPC team.
Siblings share a special bond. Observing physical symptoms in their younger or elder sibling can be scary and cause a lot of worry, concern and confusion. It can be quite overwhelming for children at times. This uncertainty and confusion can lead to increased vulnerability. Usually, it so happens that the parents’ focus is entirely on the ill child. Siblings often feel left out, and have to be in the care of other relatives such as grandparents, uncles/aunts, often for a very long duration. They might shy away from expressing themselves to their parents so as to not burden them. It is vital that parents, medical professionals and psychologists aim to provide care and support to the siblings wherein they can express their emotions and find a space to open up. Through this, the sibling can greatly strengthen the support to a child who has neurocognitive deficits through their bond. Siblings can become an integral part of caring for children with advanced cancer who are fighting their own internal battles trying to comprehend the experience they are going through.
“It seems like just yesterday that I was wearing my favourite dress and playing in the park with bhaiyya (brother). I think my parents love me more than him, after all I am their smart child who does so well in exams! I don’t exactly understand why, but we have been coming to this hospital a lot in the last few weeks. It’s so crowded, I have never seen so many people at one place. It’s also so cold in the room where they put me in that machine. The lady there said it would be quick, but it felt like forever. It also feels like forever since I have met my best friend or been to school. I hope I catch up on my studies before the next exam. Will they let me give it? I feel tired the entire day, but it’s nothing compared to the heavy sensation I have in my head the whole time. Will it ever go away? And why are my feet moving lesser? I hate this wheelchair! I hate how fat my cheeks have become! But I must not complain to mommy, I can see she cries the whole day and dad will only get more stressed out. If only someone could let me eat paani-puri, that might make this a little better. But I am sure it’s nothing like the one we have in our Kolkata. I want to go home, I miss granny. I know she is praying to God for me. I am so sleepy, maybe if I just rest a little, this might become easier……”
The paragraph above is just a glimpse of the myriad of emotions of children at an advanced stage of a brain tumour. They undergo a series of physical, emotional, psychological and spiritual changes and experiences during their cancer journey. Their distress is multi-dimensional and exhausting; with multi-disciplinary efforts required to address all their concerns. The provision of timely and optimal holistic palliative care to children with brain tumours and their families can go a long way in preserving their functional status as well as quality of life.
About the Authors:
(From left to right: Dr Shreya Nair, Dr Shamali Poojary, Dr Jayita Deodhar, Dr Manasi Patil, and Dr Prajakta Bhagat)
The PPC team is ably supported by the PPC Nurse and PPC Psychologist, and all faculty and staff of the Department of Palliative Medicine, Tata Memorial Hospital, Mumbai.
The PPC team sees around 450 new patients annually and looks after outpatients, inpatients, tele-consultation, tele-counselling and is also responsible for home-based Paediatric Palliative care.
The Paediatric Palliative Medicine programme at Tata Memorial Hospital, Mumbai, has a Clinical Fellowship since 2021 and an Academic Fellowship since 2022.