By Ilaria Bertini.
UK media outlets have reported the upcoming implementation of Martha’s Rule within NHS foundation trusts, starting from April 2024. This rule will enable swift second medical opinions for patients, healthcare practitioners, or families who express concerns regarding the patient’s response to care provided.
This new pathway takes its name from a 13-year-old girl, Martha, who tragically lost her life at King’s College Hospital in London due to a series of medical errors. Martha was admitted at Rays of Sunshine ward in Summer 2021 to treat her pancreatic injury caused by a fall from her bicycle – a condition considered serious but treatable. Unfortunately, doctors overseeing her care dismissed multiple times not only numerous red flags that Martha’s condition was raising but also her parents’ concerns about her rapid deterioration. By the time clinicians decided to admit her to the Paediatric Intensive Care Unit (PICU), Martha’s septic infection was so widespread that it was too late to be reversed.
Merope Mills, Martha’s mother, not only extensively documented and discussed on many occasions the circumstances surrounding her daughter’s tragic death, but also passionately advocated for measures to prevent similar occurrences in clinical settings. Martha’s death was deemed preventable not because of deficiencies in hospital staffing, funding or bed availability – common issues within the NHS – but rather because Martha’s symptoms and her family’s concerns went unnoticed and were disregarded for too long: “I was not listened to while at Martha’s bedside. I raised concerns but was ignored. I was “reassured” but not told the full truth. My opinion about Martha, whose trajectory I was following closely, was never sought by any doctor, junior or senior.”
With children, parents may naturally be seen as the most effective advocates for their overall well-being because of their intimate connection and closest proximity to their child. Parents are quick to notice any changes (positive or negative) in their child’s condition particularly in hospital settings where they are often present at their child’s bedside around the clock. Therefore, they are ideally positioned to raise concerns about their child’s care. However, the primary challenge is to make sure that these concerns are actively listened to and addressed.
A recent cohort study, as part of the Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology Patient Experience (INSPIRE) research project, looking at patients affected by systemic lupus erythematosus pointed out that “patients ‘may be the most underutilized resource for mitigating diagnostic error’”. The study also adds weight to “calls for improved ‘bidirectional trust’, and diagnostic partnerships between patients and clinicians.” Martha’s rule aims to promote a ‘bidirectional trust’ model, moving away from the traditional paradigm that ‘doctors know best’ – which can conflict with the informed medical consent process which by its nature already assumes a balance of power between patients and clinicians.
In contemporary healthcare settings, it is noteworthy that parents and/or patients in healthcare settings are the individuals responsible for consenting to medical procedures, whether they are undergoing treatment themselves or consenting on behalf of patients who cannot give consent as they are underage or incapacitated.
As the NHS website highlights, consent must be voluntary: “the decision to either consent or not to consent to treatment must be made by the person, and must not be influenced by pressure from medical staff, friends or family.” It must be informed: “the person must be given all of the information about what the treatment involves, including the benefits and risks, whether there are reasonable alternative treatments, and what will happen if treatment does not go ahead.” And, finally, the person should be “capable of giving consent.” These three features of medical consent already rely on establishing a mutual relationship of trust and understanding between patients and clinicians. Legally speaking, this mutual trust is the sine qua non for starting any medical treatment (except in specific emergency situations). However, this foundation – coupled by the holistic approach endorsed by Martha’s rule – could potentially lead to ground-breaking improvements in patient outcomes. As one of the key points highlighted in the INSPIRE’s study aforementioned demonstrates: “[C]ollaborative and empowering medical relationships likely facilitated more informed attributional decisions by combining patients’ depth of experiential knowledge with clinicians’ breadth of medical knowledge.”
Author: Ilaria Bertini
Affiliations: Bios Centre
Competing interests: None declared