Paediatric Palliative Care:
A Personal Insight
If you trawl through the archives of the Royal College of Paediatrics and Child Health, you will stumble across its first official publication from January 1997; “A Guide to the Development of Children’s Palliative Care Services”.
The first line of its executive summary defines this increasingly established specialty for children with life-limiting or life threatening conditions as: “An active and total approach to care, embracing physical, emotional, social and spiritual elements”.
At a recent deanery teaching day on the subject, somebody commented quite rightly that surely all paediatric medicine should meet that description, shouldn’t it? Personally I’d tend to agree…. There’s a lot we can learn from the palliative care approach and I’d advise reading the above document in which many of the key points about holistic care remain just as valid 20 years on.
Both public and professional impressions of palliative care often arise from the adult model portrayed through our media and are frequently linked with cancer diagnoses. I’d previously considered myself to have little to do with paediatric palliative care, having not worked with the palliative care team or spent time in our local hospice. Even on my oncology rotation, children seemed to be whisked away whenever we hit the end of the road…
It was only as we explored the broad umbrella that covers paediatric palliative care, I began to understand that good palliative care begins a long time before the official palliative care team even become involved and that in some ways I was already practicing it.
We all know that children are not small adults and there are many conditions out there that may only ever be seen in the paediatric population. It is almost unique to paediatrics that we see patients with such rare life limiting conditions that require end of life care before even having a diagnosis. In addition to this, children are developing by definition and their emotional and cognitive understanding is constantly changing. This requires a flexible and responsive approach to their overall care.
The Association of Paediatric Palliative Care (ACT) describes 4 broad categories of children that may benefit from a a palliative approach:
Category 1- Life threatening conditions for which curative treatment may be feasible but can fail- e.g. childhood cancers
Category 2- Conditions where premature death is inevitable where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities- e.g. Duchenne muscular dystrophy
Category 3- Progressive conditions without curative treatment options where treatment is exclusively palliative and may commonly extend over many years- e.g. mucopolysaccharidoses/other rare genetic neurometabolic conditions
Category 4- Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death- e.g. severe cerebral palsy
The final category certainly rang a bell with me. Many of us have been in the position of caring for a severely disabled child during an acute deterioration as we transfer them to PICU for the umpteenth occasion. This inevitably rears concerns that we may not be doing the right thing for that child and prompts further discussions with the family. In an ideal world discussions would happen before a major event but in reality each family is different and some might just not be ready to face the possibility that their child isn’t going to survive until it’s staring them in the face.
The responsibility for these conversations is often therefore taken on by the front line paediatricians rather than the palliative care team following a recognition that this child’s life is going to be limited. I use the word ‘is’ rather than ‘may be’ as it’s important to be honest with parents. It’s lovely to believe in the golden exception but this can delay acceptance of the inevitable, and the shift towards focusing on quality of life over preservation of life at all cost. There are two common myths I think it’s important to debunk. One is that treatment and palliative care cannot run alongside each other and antibiotics, fluids, even last ditch chemotherapy can all continue whilst ensuring that a child is comfortable and his social, emotional and spiritual needs are met. The other is that the palliative care pathway is one-way and only has one clearly defined endpoint (the end of life). Although this is true in the majority it of cases; there are occasionally children who recover against the odds and no longer require palliative care services.
For parents in difficult and upsetting circumstances it can all get a bit much. Not everybody is good at these conversations and if you’re not confident it’s sometimes better to leave things to somebody who is. There is a useful BMJ learning module on paediatric palliative care with a section on understanding how to approach sensitive discussions with parents. In South Wales, we are lucky to have the charity funded Ty Hafen hospice who can help support families of children with life limiting conditions. There’s a section for professionals on their website with details of how to refer children and their families for support. The togetherforshortlives.org website also provides lots of useful information about paediatric palliative care services including details of their current project working with ethnic minorities to promote better engagement and understanding of hospice services
Paediatric palliative care is everybody’s business from neonates to community paediatrics. Taking a holistic approach to the care of children and their families often comes naturally to paediatricians but for children with life limiting conditions, this approach is even more paramount.