For most people outside of the palliative care world, the words hospice and palliative care are synonymous with end of life care. The case that follows serves to remind us that, more importantly, it is about quality of life for whatever time a patient has left. Children often live for many years with their illness or condition and good management ensures that those years are lived to the child’s full potential.
I walk into the tiny but immaculate home and am greeted by a smile that lights up the room. Cradled in his mother’s arms, Clement is smartly dressed in new jeans and a brightly striped T-shirt. It is his eleventh birthday; a real celebration. I think back to 18 months ago when I first met him at a local hospital in Durban, South Africa. I can hardly believe the transformation.
As a doctor working in children’s palliative care, I was asked to see this skinny little boy with severe cerebral palsy. He had been admitted with aspiration pneumonia caused by his difficulty in swallowing and he was in a great deal of pain due to muscle spasms; all common and well recognised complications of neurological impairment in children. He was fed through a nasogastric tube but he was caught in a vicious cycle of pain, recurrent aspiration pneumonia, seizures and distress.
When I first saw him he had been in hospital for nearly 3 months. He had been on multiple antibiotics, was oxygen dependant and had been subjected to endless blood tests and chest x-rays. Because of his swallowing issues, his mother needed to use a suction machine to clear his mouth frequently. Everyone was getting desperate, starting to believe he would not recover and that perhaps it was time ‘let him go’. His mother never left his side. We counselled Clement’s parents, hoping for the best but quite certain that things were only going to get worse.
His primary care team felt nothing more could be done. However, reviewing his symptoms and medications we realised that we hadn’t even scratched the surface of possible treatments. We needed to change the focus of care from trying to ‘fix’ his current pneumonia. We made sure that we involved both his parents in every step along the way.
It was important that we reviewed the causes of symptoms in children with neurological impairment and how to approach them. Our thought processes followed these lines:
- Painful muscle spasms – oral baclofen was not helping with Clement’s spasms. We started low dose morphine as an analgesic and diazepam as a muscle relaxant.
- Seizures – he was fitting frequently, which would be increasing the risk of aspiration. He was on 2 anti-epileptic drugs, one of which, Clonazepam, increases oral secretions. We reduced this and hoped the diazepam would also help to prevent seizures.
- Drooling and pooling of oral secretions – we reduced drugs that could make this worse and increased the frequency of oral suctioning.
- Malnutrition – considering his condition holistically, we counselled the parents and attending health professionals that his calorific intake was no longer the most important aspect of his care. Rather, Clement’s comfort should be our focus. This relieved a great deal of pressure from everyone who had been trying to keep up his oral intake.
- Gastro-oesophageal reflux, delayed gastric emptying and abdominal distension – these are common features in children like Clement and are worsened by overfeeding. We started omeprazole to relieve any reflux, if present, and reduced the quantity of the naso-gastric feed until he appeared more comfortable. with no abdominal distension.
- Aspiration, associated chest infection and shortness of breath – the morphine relieved his shortness of breath and diazepam, some of his anxiety. Very quickly after the first morphine dose, he breathed more deeply and his oxygen saturation improved. We continued antibiotics at this time. The omeprazole and lesser feed reduced the episodes of aspiration.
The result was a comfortable child who could breathe more easily and stopped aspirating. His chest improved, the oxygen was weaned and he went home, happy.
Managing neurologically impaired children can be distressing for the health professional who is trained to cure illnesses, directing treatments at the cause. Pain and other symptoms are a very significant problem but largely underestimated, particularly in children who are unable to report or describe such symptoms. We need to accept that even when we cannot cure or fix the underlying cause, there is much we can do to relieve these symptoms and at the same time equip parents and caregivers to manage the child at home.
As for Clement, 18 months later he is still at home and thriving!
Dr. Julia Ambler is a general practitioner specialising in paediatric palliative care and co-founder of Umduduzi – Hospice Care for Children. For more information, visit www.umduduzi.co.za
Click here to watch a YouTube video of Dr Julia Ambler