Paediatric palliative care – a multi-disciplinary story

Paediatric palliative care – a multi-disciplinary story

A 9-year-old girl was admitted to Lambano’s In-Patient Unit on 04/03/2021 with the diagnosis of Disseminated Medulloblastoma. Medulloblastoma can happen at any age, but most often occurs in young children. Though medulloblastoma is rare, it’s the most common cancerous brain tumour in children. It starts in the lower back part of the brain. This part of the brain is called the cerebellum. It is involved in muscle coordination, balance, and movement.

The child was transferred to the In-Patient-Unit from Chris Hani Baragwanath Academic Hospital (CHBAH) Oncology Ward after having undergone extensive treatment including surgical resection, post-surgical radiation as well as chemotherapy. She had previously been taken care of by her family.

Her overall condition required hospital admission for nasogastric feeding, oxygen therapy and pain control. Due to her not having weaned off oxygen, she was stepped down into hospice care. The family was counselled with regards to the End-of-Life implications of her advanced disease.

The child was admitted with the following medication: Morphine 5mg po prn and Epilim 400mg po bd. Seizures were well under control but not the pain.

Assessment of all symptoms resulted in the medication being adjusted as follows: Epilim continued as 400mg po bd, Morphine 2,5ml po 4 hourly and Lacson 10ml po bd.

At the time of her admission, she was receiving oxygen therapy at 2lt per minute via nasal cannula. On full nasogastric tube feeds due to feeding difficulties. Strictly Nothing by Mouth. All the medication and feeds were administered via nasogastric tube. Neurological fall out with spasticity and neuro-irritability. Heightened sensitivity to noise, touch and light. The child was successfully weaned off oxygen during her stay at hospice and remained well perfused and well saturated on room air.

It is unfortunate that this child was referred to our services at such a late stage of her disease progression. Referral should have taken place at the time of diagnosis and palliative support should have commenced during curative treatment.

At the time of her admission to the hospice environment the family understood that the previous treatments had failed and that she was now receiving palliative care. Both maternal and paternal family continued to visit at the hospice, and they were open to interaction. The mother was sleeping over with her child on numerous occasions. The family was not aware that there was an option of them taking her home. When the mother was offered palliative Home Based Care, she was very relieved. She received training with regards to the NGT at hospice and proceeded to take her home.

The medical team, social worker and spiritual counselor spent a lot of time with the family, providing counseling. The child was discharged from the Lambano In-Patient Unit on 30/03/2021.

The Home-Based Care Team continued to support the family and the child in the home environment. Issues of pressure care, pain control, constipation, guidance on feeding volumes as well as NGT support/changing were addressed. Wound care became necessary as some of the surgical scars were struggling to heal due to subsequent tissue damage caused by radiation. Psycho-social support was necessary despite the high level of acceptance by the family members. Even though the facts of the advanced disease and the necessary steps are explained, support is needed as the family transitions through each phase of the End-of-Life Process. The child passed away at home in July of the same year.

Author: Sr Sibylle Coradi – Home Based Care Manager