An eight-year-old child attends her last day of school before Easter holidays, plays with her siblings, has dinner and gets ice-cream. The next day she develops a headache and vomiting. Then, as her hands grow cold, her parents take her to the local children’s hospital.

Minutes after the child is triaged as lower priority, her mother tells the emergency department clerk that she is concerned about white patches in her daughter’s eyes. A junior doctor decides this can wait.

One minute later, the child’s mother is back at the desk. This time, a nurse documents a high temperature and heart rate but doesn’t act. An hour later, the child can barely speak. A nurse acts. Two hours later, the child is dead.

The diagnosis: fatal sepsis due to Streptococcus A, the same bacteria that causes strep throat and tonsillitis.

The subsequent coroner’s inquest in 2023 uncovers excruciatingly painful details and missed opportunities.

On the night of the incident, one nurse was responsible for nine patients (a reasonable ratio is one to four) but sometimes two nurses were responsible for up to 60 patients. Combined with a shortage of other resources, disaster was waiting to happen.

For their part, the parents described repeated failed attempts to escalate their concerns, their anxiety for their child mixed with worry about “being kicked out of the hospital for being rude”. They described staff avoiding eye contact and seemingly not taking the spectre of a rapidly deteriorating child seriously enough.

The whole ordeal was unbearable, so it was only a matter of time before several Indian professionals asked me what I intended to do, implying that also being Indian, I had an obligation to raise the uncomfortable issue of racism in healthcare. But given the string of omissions that resulted in the tragedy, I found it glib to attribute the entire occurrence to racism or unconscious bias – and indeed, no such allegations or findings were made during the inquest.

I reflected on the question of what I should do as a parent who has experienced both loss and medical emergencies.

When your child’s life hangs in the balance, or worse, that child dies, in that moment, there are no healing words, only noise. It was impermissible for anyone to say, “I know how you feel.”

I also reflected on the question as a doctor who has made her share of errors. No matter how many inquests absolve the individual and implicate the system, the avoidable death of a patient is an intensely personal failing. It is a memory that clings to you, wakes you up in the middle of the night and humbles all but the most insight-less person.

I didn’t write about the incident at the time, but the thought that gnawed at me was, “if only someone had listened to the parents”. Recently a group of Australian researchers has designed a pragmatic study to examine the relationship between parental concern for clinical deterioration and critical illness.

Over a period of two years, across nearly 74,000 children younger than 19 presenting to a paediatric emergency department or inpatient unit, parents were asked one simple question: “Are you worried your child is getting worse?”

Of the nearly 190,000 responses, just under 5% indicated concern for clinical deterioration. The first notable finding, therefore, was that contrary to assumptions, parents of sick children don’t cry wolf, they act judiciously and respectfully.

The second sobering finding was that compared with patients whose parents did not have a documented concern, patients whose parents reported a concern were more likely to be admitted to intensive care, receive mechanical ventilation and die during admission. As if this were not lesson enough, parental concern was found to be more strongly associated with ICU admission than any abnormal vital sign including abnormal heart rate or breathing, cardinal signs of deterioration relied upon by clinicians. In 19% of cases, parents reported a problem several hours before any vital sign abnormality.

When the time comes to die, what end-of-life care would doctors choose for themselves?

Ranjana Srivastava

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I had to read this multiple times to absorb the significance.

It’s all very well to have bright rooms and fancy equipment but what is the most child-friendly thing of all? It’s to ask the parents if they are worried.

If the findings can be replicated, this “intervention” will turn out to be blindingly simple and yet, potentially life-saving. This is the stuff of good medicine – cheap, effective, widely applicable.

Coming from the world of adult medicine and geriatric oncology, what applies to sick children applies just as much to sick adults. Caregiver concern should be labelled a vital sign. But while we all know the importance of eliciting such concern, the truth is that it is commonly neglected.

Now, there is evidence to insist on change – not just to record concern proactively but to build robust systems that respond quickly.

As I wrote this column, I kept thinking of the bereft parents who don’t need a study to validate their bitter lived experience.

No one can remedy their loss but the least healthcare professionals can do is pledge to patients and their carers to never again to put our assumptions before their instincts.