How can GPs support the families of very young patients?

As a GP trainee I was apprehensive about my first set of paediatric night shifts. Seeing children in a GP practice is often the highlight of a busy day, however the prospect of being faced with an acutely unwell inpatient in the middle of the night was terrifying.

Early into my first night shift I clerked a patient who was known to palliative care and was being admitted from A&E. Having just finished a six-month attachment at an adult hospice, this was a case I thought I would be more comfortable with. However on this, and subsequent nights, the difference between dealing with adults and children in the terminal phase of their illness became more clear.

I would normally explore the patient’s understanding of their illness, what difficulties they have been having, and what they are expecting on admission. However when faced with a five year old who could happily tell me about his favourite songs and films, I chose to talk with his parents, and not with the patient himself. I had no idea how, or even if, to approach these kinds of discussions with such a young patient. These conversations are always challenging; in the hospice I had felt comfortable having these discussions with the patients, and their families, but in this situation I felt completely out of my depth.

I was amazed by the strength and knowledge the patient’s parents had. Over subsequent nights the patient became more unwell, and they were aware of all of the different recommended options regarding his symptom management plan, recognised in their son subtle changes, and communicated this to the team effectively. They showed a realistic expectation of what could be achieved during this admission with regards to treatment options and outcomes, and were always understanding about the difficulties faced when balancing benefits of different symptomatic management options with the side effects involved. Their appreciation of the situation their son was facing was a testament to the work that his medical and palliative care team had put in leading up to this point.

On reflection, a lot of the challenges I encountered were inevitable. I met this family for the first time in the middle of the night, and was able to establish what the family’s wishes were for limitations for treatment. A discussion with the patient establishing what he understood was not appropriate at this time. It opened my eyes to the difficult work the palliative care team undertake where children are their patients — preparing both the child and their family for what is going to come, and how to manage difficulties as they arise.

Following this case I spoke to local GPs about their involvement in similar cases, and I now have a much better feel for the role of the GP as a constant point of contact for the patient and their family — providing both medical, and emotional support to families at this difficult and vulnerable time. Liaising and working with secondary care services is essential, especially when managing medical symptoms. However the GP has the unique perspective of long-term relationships with not only the patient, but also their parents and siblings. Maintaining those relationships, and being able to provide long term care and support is a privileged position for GPs, and one I hope to accomplish in the future.