Following the tragic loss of teenager Martha Mills in hospital, patients may have the right to a second opinion, but our columnist fears it may not be enough.
Martha Mills would have turned 16 earlier this month. But instead of celebrating her birthday, her parents were campaigning for Martha’s Rule to be introduced to protect other patients succumbing to avoidable death in hospital.
Martha died three years ago after developing an infection and then sepsis, following an injury to her pancreas following a harmless accident on her bicycle while on a family holiday in Wales.
As a father of a 16-year-old daughter, like everyone who has heard their tragic story, my heart bleeds for the family. They also suffered the agony of losing her, knowing that Martha could have survived if the staff had listened to her concerns.
To compound the horror of her story, Martha was admitted to the Rays of Sunshine ward at King’s College Hospital, London, a world-leading pediatric liver unit that also specializes in pancreatic injuries.
Martha Mills (pictured) would have turned 16 earlier this month. But instead of celebrating her birthday, her parents were campaigning for Martha’s Rule to be introduced to protect other patients succumbing to avoidable death in hospital.
Two years ago, Martha (left) died unnecessarily in the hospital a few days before her 14th birthday. In the photo: Martha and her mother Merope Mills.
Her injury meant Martha had to be fed through a tube up her nose and into her intestines and, within weeks of receiving care, she developed an infection.
In the vast majority of cases, these infections are easily treated with antibiotics; but Martha developed severe sepsis and her condition deteriorated.
But each deterioration was essentially ignored or explained away by high-level consultants and professors who missed multiple opportunities to save his life.
Even experienced doctors described a sepsis rash as a delayed reaction to the medication.
Others, especially her parents, realized how unwell she was and wanted her in intensive care. But it wasn’t until she had a seizure that the medical team realized how sick Martha was: by then it was too late and she died the next day.
The hospital later apologized and said it was “committed to delivering further improvements to the care we provide.”
How many times have we heard that? The same apologies and commitments to “make changes” or “improve care” have become almost a formality in every case of tragic, preventable death.
And I fear that many more will continue to die unnecessarily. Before anyone says it’s all about finances and pressures, the fact is that Martha died in a well-funded ward, with senior doctors looking after her and intensive care beds to go to if she had been referred. It is much more complex than the lack of resources.
After the coroner’s inquest, the coroner issued the hospital with a Preventing Future Deaths report, also known as Regulation 28. In essence, this is an order telling the hospital what to change.
There were recommendations to improve staff training on sepsis, to have a designated consultant for each patient and to introduce improved systems for escalating concerns to the intensive care team. But will this really stop a future tragedy?
It has been said that “insanity is doing the same thing over and over again and expecting different results” – and I fear that these recommendations will not solve the fundamental problem, which is cultural and rarely addressed.
Many errors can be prevented by talking, either with other doctors or with the patient’s loved ones. During the last week under Martha’s care, senior consultants and teachers made incorrect diagnoses, not deliberately, and in retrospect it is very easy to see where they were going wrong.
A well-known phenomenon when it comes to making decisions of any kind is our natural tendency toward cognitive bias, such as “confirmation bias”: looking for evidence of what you think is happening rather than looking for evidence of what else it might be.
Martha died three years ago after developing an infection and then sepsis, following an injury to her pancreas following a harmless accident on her bicycle while on holiday with her family in Wales.
Martha’s mother, Merope Mills, pictured, said she and her husband, Paul Laity, expressed concern about Martha’s deteriorating health several times, but no action was taken.
For example, in Martha’s case, the rash caused by sepsis was attributed to a delayed reaction to the medication rather than anyone thinking, “What could the other causes be?”
In a medical context, “availability bias” has a particular impact: it’s when we only think about things that come quickly to mind. Martha’s was the first pancreatic trauma death the ward experienced, so people simply didn’t believe she was dying.
Except some people did believe it. But either they did not speak or, in the case of his family, his voices were not heard.
We have a problem with the culture in hospitals of not talking. It’s getting better, but this tragedy shows that it hasn’t gone away. Many are afraid to challenge the hierarchy and senior leaders do not encourage it.
Although I work as an emergency consultant, I am also trained as an intensive care consultant (ICU).
Having reviewed the coroner’s report, I am sure there were junior nurses and doctors who disagreed with the consultants’ decisions not to refer Martha to ITU, but felt they could not challenge it.
We need to change this culture. We need senior staff to encourage all staff to challenge them and ask them why they are making certain decisions.
I know how difficult it is to challenge. As a junior doctor, I struggled to speak and on one occasion did not intervene when my consultant was placing an IV in my patient’s neck without using an ultrasound.
This increases the chances of infection. Five days later, the patient developed MRSA and, due to my lack of courage, she had to spend weeks in intensive care.
But Martha’s parents did speak out: they repeatedly asked that their daughter’s diagnosis and the decision not to admit her to the ITU be reviewed. Listening to families has saved me from harm on many occasions.
During the second wave of Covid, when almost everyone I saw had the infection, I fell into an ‘availability bias’ and misdiagnosed a patient with Covid when, in fact, he had sepsis caused by an infection in the tonsils and needed urgent intravenous antibiotics. (as you know, Covid is not treated with antibiotics).
When I asked the family if they were happy with the plan to treat the patient with oxygen only for ‘Covid’, they said no, ‘because it didn’t seem like ‘Covid’ only.’ He had me review the case and, realizing my mistake, start antibiotics, delayed, but not long enough to cause lasting problems.
That is why I welcome Health Secretary Steve Barclay’s announcement last week to support the introduction of Martha’s Rule to ensure families’ concerns are heard.
In a largely forgotten study published in 2015 by Cincinnati Children’s Hospital in the US, parents were given the right to summon the emergency medical team to the room if they were worried, just as nurses could. .
In 24 percent of these calls, the child ended up going to the intensive care unit, showing that parents often know best and we need to have ways to ensure they are empowered, something Martha’s Rule will help achieve.
But Martha’s Rule will not change the cultural problem of staff’s reluctance to question and speak out.
Guidelines and new rules cannot alter the way people think and behave. That requires education for all staff, from CEOs to doctors and ward clerks.
We must also ensure that Martha’s Rule does not have unintended consequences: that already stretched staff lose their care of the sickest patients. Therefore, it must be carefully drafted with patient safety experts and in collaboration with the hospitals that will implement it.
Martha’s legacy must be to change a culture to avoid another unnecessary death. She deserves no less.
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