Merope Mills rightly refers to “a culture dominated by hierarchy, status and overconfidence” – clinicians depriving patients and their families of agency and confidence, thus wasting an important source of intimate patient expertise (My daughter Martha died needlessly in hospital – we believe this change would have saved her, 4 September).
Martha’s Rule is an excellent idea to empower patients and their loved ones when they are at their most vulnerable, confronted with a clinicians’ culture used to withholding and downplaying bad news, or blaming patients for their own misfortune. All of this happened in my daughter’s case.
Gaia died in the same year as Martha in another London teaching hospital, 17 hours after admission with undiagnosed raised pressure in her brain – an emergency that needs immediate treatment. I was not contacted or updated on how seriously ill Gaia was. When I turned up at the hospital, I was sent home with the promise that a doctor would call and update me. This call never came. I was beyond myself with worry.
There was no number or system or person to turn to for help, for escalation, for someone to tell me anything truthful about Gaia’s situation, or for me to confirm that my daughter was not a recreational drug user as her doctors had wrongly assumed. I was completely kept out of my daughter’s last hours. As Gaia was not able to speak for herself because of her confused state, her dying voice wasn’t heard.
Like Martha, Gaia was never escalated in time to critical care. She died alone under her shocked doctors’ noses at the age of 25.
I, too, believe that an easy-to-contact and quick-to-respond “external second opinion” would cut through clinicians’ own unhealthy concerns, prioritise patient safety and have the potential to save lives – especially in emergency situations at weekends when our NHS is at its most vulnerable, with wards mainly staffed with junior doctors and consultants on call.
Dorit Young
London
• Our deepest condolences to Merope Mills and Paul Laity (who wrote in the Observer on 27 August) on the unendurable loss of their beloved Martha.
We feel that they have a window into our hearts and our pain, as our own daughter’s death was avoidable too. Juliet was 25, but her disabilities (she had Cornelia de Lange syndrome) meant that she always needed our care to lead a happy life (Juliet Saunders obituary, 8 June 2020). She gave us great happiness and, without her, existence is bleak. Her bedroom and her toys still await her. Martha’s family would understand.
A lifetime of excellent medical care ended catastrophically in March 2020. Juliet went by ambulance to our local emergency department after experiencing abdominal pains. I explained the risk of a fatal bowel obstruction, but the doctor assured us that she only had gastritis, and discharged her. Thirty-six hours later, we found her dead.
As the post-mortem showed that Juliet had died from a bowel obstruction, there was an inquest. The doctor had missed the signs on an X-ray, failed to consult a senior colleague and discharged her incorrectly.
The coroner, showing empathy and kindness throughout, wanted Juliet’s photo to be displayed facing him. He found that neglect had contributed to her death. Good doctors and patients deserve better.
Christine and Francis Saunders
London
• One absolutely fundamental point, which I teach to all of my trainees, is that mothers have an annoying habit of being right (bedside nurses are often similarly gifted). They know and love the child better than we ever will, and if a mother says “he/she is just not right”, it is a major red flag that has to be fully assessed. Perhaps we should begin to cede some power to those better qualified. Such systems as proposed do work and are only rarely used inappropriately.
Even if used inappropriately, the use of the system is a flag that we may well have got something else wrong, most likely in our communication with parents and/or child. This is useful information that may help prevent further problems in other areas, not least distress to families, so is still a valuable use of the system. There is little to fear from such systems and a lot to gain.
Dr Andrew Watkins
Olinda, Victoria, Australia
• The Surviving Sepsis Campaign was launched in the 2000s to hone and formalise our approach to an old condition. It continues to do good work to this day. Recognising and mitigating sepsis forms a huge part of our workload and research focus in acute care.
Second opinions are also commonplace in medicine. Those who ask tend to get one. The fact that this is not written into protocol reflects the enormous drain on the service such an expectation would generate. The right to a second opinion in any context sounds very attractive, but the resources would have to come from somewhere, which means they couldn’t go somewhere else.
But where does this leave the parents of Martha Mills? One option is to have a second way to escalate a case to ICU. This can be provided by critical care outreach teams. Some trusts already operate this policy. There may be other trusts that would benefit. Rather than expecting patients and carers to initiate the process of their own ICU admission, it’s more likely that having multiple routes into ICU would aid clinicians to make the right decision.
Dr Jack Pickard
Paediatric intensive care doctor
• The catastrophe that has led to consideration of Martha’s Rule is the tip of a large iceberg of failure, of which an important component is loss of continuity of care. Merope Mills identified this as a key factor in her daughter’s case, observing that Martha was seen by a different consultant every day. What may not be appreciated is that this has become the care norm, with the demise of medical teams or “firms” responsible for an individual patient’s care throughout their journey, within which was embedded the opportunity for constant discussion between doctors of different grades, a kind of rolling audit which benchmarked clinical practice, increased the potential for early warnings, and was a powerful educational and experiential tool.
We now have fragmented shift-based care systems in which handover becomes critical, with a requirement to constantly relearn patient details, an inevitable reduction in awareness of trajectory (a key prognostic indicator), and a loss of clarity regarding responsibility for decision-making. The psychology of handover care is markedly different from that of continued clinical responsibility, and markedly inferior to it. Lack of continuity has undoubtedly cost lives, and will continue to do so.
Dr Philip Barber
Consultant respiratory physician
• Have an opinion on anything you’ve read in the Guardian today? Please email us your letter and it will be considered for publication in our letters section.
