Patient Care (personal perspective)

Being a paediatrician is a great honour.

Child patients are a pleasure to care for. Over the years they have led me to some charming insights into life. To recite one encapsulating anecdote is tricky, but one does stand out.

Scene: my most difficult job on a busy neonatal unit in 1990. A small boy walks in the room to see baby sister. Baby sister weighs 502 grammes and is being ventilated whilst lying on an ‘open cot’ with overhead heating and no cot sides. These were regarded as state of the art at the time. So I turned round to ask older brother (aged 3 years) what do you think we are doing with your new baby sister. He took one look at the set up and said “toasting baby.”

But having a sick child can be scary as a parent, and being sick can be a traumatic experience for a child. Parents, carers and children therefore have a right to expect a high level of competence as well as understanding and kindness from their paediatrician.

This is best summarised by a statement I read recently in the New England Journal of Medicine what is needed is the quintessential medical skill “to touch patients with a kindness and competence that brings trust and hope to troubled lives.”

I aspire to that standard of care.

I follow some simple rules when caring for children and young people. The first and foremost is that the mother (or main carer) is always right. Occasionally, of course, this is not true but those instances are rare.

The second is that there is always something positive which can be done to improve a child’s care. We doctors are practitioners in a skilled and trusted profession, but in addition to using technical knowledge to cure or ameliorate disease, a placebo type effect surrounds all that we do. The opposite of a placebo is called a nocebo, and the wrong manner with families, their children or young people as patients can have a detrimental effect on even the most skilled care.

Unfortunately, sometimes, children have chronic illnesses which are incurable at the present time. My patients and their families not only provide me with the inspiration to ask questions, suggest ideas and subsequently todevelop research projects as a clinician scientist but they also need hope in their lives, even if such cures are not yet available. I consider it very important as a doctor to be positive. With honesty. At all times. There is not a disease known to man which has not undergone spontaneous recovery so to give no hope could be argued to be misleading as well as ‘nocebic.’

Children should not be in pain. And yet from time to time, pain management of acutely ill children is inadequate. As part of my teaching at both undergraduate and postgraduate level, and as an example to colleagues in paramedical professions (such as nurses), I proactively promote considering good pain management, nutrition, warmth and general comfort levels, along with other factors which can be overlooked in the overall package of acute and chronic care provided.

Being confident about decisions as a paediatrician is important. But excessive pride has no place in patient care. If asked a question by a family that I do not know the answer to my first response is to say that I do not know the answer, but my second is to allocate the responsibility for looking up information which would bring me in a position to provide that advice. Thus, my medical students and junior doctors are sometimes tasked with looking up the latest evidence or helping a family to get to the advice they need, once seen and approved by me.

Families appreciate honesty (with kindness) most of all from their doctor and thus I do not consider expressions for example such as ‘it is probably just a virus’ appropriate, without a further expansion as to the possible specific type of virus. Parents do not like being palmed off, being given false reassurance, being given unreasonable expectations. From a consultant paediatrician the patient’s family has a right to expect thoroughness and if I am faced with the possibility that other specialists may provide improvements to a patient’s care I have no hesitation in requesting those views. One of the skills of a general paediatrician is to steer that care and engage with tertiary specialists.

Some of the most challenged families I care for, have children with learning and other chronic difficulties and with chronic illnesses (such as epilepsy and rare genetic disorders). These families are perhaps most needful of a supportive empathic paediatrician who is willing to advocate for them and their child.