At the first Patient Safety Management Network (PSMN)* meeting of 2022, we were privileged to hear from a bereaved relative about her shocking experience, which reminded us all of why we do what we do.
Claire Cox, one of the PSMN founders, invited Susan (not her real name to protect her confidentiality) to share with us the causes of her relative’s untimely death and the poor and shameful experience when she and her GP started to ask questions. This kicked off a valuable and insightful discussion about how patients are responded to when things go wrong and about honesty and blame, patient and family engagement in decision making when patients are terminally ill, and how we need to ensure that the new Patient Safety Incident Response Framework (PSIRF) guidance embeds good practice informed by the real-life experience of patients and staff.
Two years before Susan’s relative died, he was scanned for an unrelated condition that needed no treatment. This scan showed a small tumour which was recorded and identified as a red alert. The locum doctor reviewing the scan was 16 hours into his shift. No action was taken by the Trust and neither the patient nor his GP were alerted to the tumour and the need for immediate treatment. Eighteen months later, Susan’s relative presented with symptoms at his GP’s surgery and was referred for urgent assessment. He was diagnosed with cancer and a course of chemotherapy and radiotherapy was undertaken, although it was subsequently acknowledged that the tumour was not survivable and he was terminal.
The Trust only realised that no action had been taken on the scan when the relative’s medical records were requested after his death some two years later. The patient’s records were only asked for when the relative’s GP raised concerns; his GP couldn’t understand why the patient had deteriorated so quickly. This was a real shock for Susan, as at no time during her relative’s intense treatment with chemotherapy and radiotherapy was it shared with her that there had been a missed opportunity to diagnose and start treatment earlier.
Susan’s main concerns were:
- The misdiagnosis and failure to act on the first scan. The Trust acknowledged that the tumour, if treated when it was first found, was survivable.
- A failure of honesty and information sharing. The clinicians never shared with her the findings of the first scan until the investigation, even throughout all the interventions and discussions on his prognosis and treatment.
- A failure to share how unwell her relative was. Consequently, her relative wasn’t informed that his condition was terminal. He was therefore denied the opportunity to make decisions on his treatment. As Susan said, he didn’t have to endure the treatment. He could have chosen to live his remaining months without the pain and consequences of chemo and radiotherapy if he had known that he would never survive his tumours.
- The failure to listen to her relative’s wishes in sharing information and the frankly brutal way in which his terminal illness was communicated to him in the presence of young family and a ward full of patients and their relatives.
- The radiotherapy was undertaken without a protected guard leaving her relative severely burnt and when her relative died 10 days later and Susan asked, did this kill him, she was told ‘yes’.
- The investigation process was flawed, full of reassurances that were not met, such as honouring a commitment to provide Susan with information and support. The investigation report was sent unannounced by post without any explanation and Susan never heard from the investigator again. Susan’s GP was very supportive, helping her interpret the report and guiding her as to her options.
- The failure to learn. One of Susan’s main motives in following up her GP’s request for her relative’s medical records, was that there should be learning to prevent harm to others. Susan stated powerfully that she fully understands that mistakes are made but cannot understand how staff don’t regularly review their day’s work, identifying where improvement is needed and taking actions informed on this. Susan is not convinced that any learning has been made and, therefore, the same circumstances that led to her relative’s untimely death could happen again. This is understandably very distressing
- A failure to use resources effectively. She believes her relative would, if he’d been given the choice, have not agreed to the unnecessary treatment. Susan was very conscious of the costs of treatment, resources that she said could have been better deployed on others as they were of no value to her relative as he was terminal (even though this wasn’t shared with the family until after his death).
Patient safety managers were clearly shocked at Susan’s story and the poor support and communication with Susan and her relative. They discussed how their roles are so important to ensure that patient and family insight informs investigations and provides answers to the questions that families need to know. They discussed the value and importance in engaging with patients and relatives and that it shouldn’t be necessary for formal complaints to be made; as soon as an organisation is aware of serious failings, they should be taking the lead in finding out what when wrong, why and how to prevent it happening again.
The patient safety managers reflected on Susan’s experience and talked about how best to share information with relatives, the sensitivity and support needed. Do NHS Trusts need to formally employ patient and relative liaison staff, such as those trained in the police? They highlighted the learning and insight to be gained from the excellent work being undertaken by Lou Pye and her team at the Healthcare Safety Investigation Branch (HSIB). How can all Trusts ensure good practice as part of PSIRF implementation?
There was genuine compassion and sorrow for Susan and a huge expression of gratitude at her bravery at sharing her experience with us all. We all took away the commitment to listen, engage and learn with patients and relatives.
*The PSMN is an informal voluntary network for patient safety managers in England, created by and for patient safety managers, it provides a weekly drop-in session with guests to talk through issues of importance to patient safety managers, providing information, peer support and safe space for discussion. You can find out about what the network has been up to here.