Telling the truth – how patients’ stories can teach doctors the importance of open disclosure
by Jane Feinmann
When Clare Bowen’s daughter Bethany died during routine surgery in 2006 aged five years old, the tragedy could hardly have got worse. But it did.
Just 19 months later, Clare’s husband, Richard, died of a heart attack – a tragedy that, like his daughter’s death, was almost certainly avoidable. For there is little doubt that Richard died as a result of stress caused by the obstructive attitude of NHS staff at John Radcliffe Hospital in Oxford in response to the couple’s search for an explanation as to how their daughter bled to death during keyhole surgery to remove her spleen.
“You are in so much pain and despair after the death of a child that you don’t have the strength to fight a hospital, but that’s what we had to do,’ says Clare. “Records that should have explained what went wrong mysteriously disappeared. A year after Beth died we were still having meetings with the hospital and they kept changing their story.’
The details of the Bowen’s tragedy may be uniquely tragic. But the healthcare professionals’ behaviour is horribly common. While the Department of Health acknowledges that half a million NHS patients suffer avoidable harm every year, less widely recognised is the large number of these cases where significant barriers prevent the patient or their relatives being fully informed.
The Department of Health has long acknowledged ‘a culture of denial’ in the NHS (Safety First, Department of Health, 2006): National Audit Office report in 2005 revealed that only 24 per cent of NHS trusts routinely provide information about patient safety incidents with six per cent admitting to never informing patients.
That could all change. The health White Paper, Liberating the NHS, made a commitment to ‘require’ hospitals to be open and honest when things go wrong. An announcement spelling out the details of a brand new initiative is due imminently – and there is little doubt that it is badly needed.
For a start, the cover-up culture is known to be hugely damaging. ‘Lack of openness means that the NHS is deprived of information which could help prevent reoccurrence of the same mistakes while injured patients or their next of kin are deprived of their natural right to know what happened and why’,’ points out AVMA (Action against Medical Accidents). What’s more, the evidence suggests that the doctors involved often want to provide information – but are discouraged by a system that promotes secrecy.
Perhaps the craziest aspect of all this is that the culture of denial is designed to prevent litigation – yet has the opposite effect. Where open disclosure has been adopted as policy, as has happened in Australia and parts of the USA, the results are wholly beneficial with the strengthening of doctor patient relationship alongside a dramatic reduction in litigation costs.
‘Patients don’t file malpractice lawsuits because they’re greedy but because they get so angry when communication, honesty, accountability, and literally good customer service are lacking after a perceived error,’ say Doug Wocjieszak, founder of the US campaign, Sorry Works! ‘They turn to litigation when they see the doctor abandoning the family, the nurses turning cold, the hospital administration promising investigations and meetings and never following through.’
Repeated attempts to change the cover-up culture within the NHS have so far been unsuccessful. In 2005, a ‘Being Open’ policy, requiring trusts to provide information, support and training to encourage doctors to practice open disclosure, was introduced by the National Patient Safety Agency and re-launched in 2009. Yet a series of studies have shown that little has changed.
Indeed, this culture of denial is increasingly recognised as being deeply ingrained in the thinking of both doctors and managers. ‘Some NHS staff may find compliance with open disclosure recommendations cathartic or therapeutic, others will not. And none will find compliance easy,’ commented Stephen Walker, chief executive of the NHS Litigation Authority in 2009.
A recent survey by the Medical Protection Society showed that while more than 90 per cent of respondents agreed that patients are less likely to sue if they receive an apology or explanation, only two thirds believed that doctors are willing to be open with patients when things go wrong.
‘Doctors already have a professional and ethical obligation to be open with patients in the event of an adverse event,’ commented MPS Director of Policy and Communications, Dr Stephanie Bown. ‘Yet we know that many doctors worry about the legal and professional consequences of meeting this obligation.’
There is optimism, however, about the Government’s renewed commitment to open disclosure. The Department of Health is known to be considering two different options. Firstly, there is a demand from Action against Medical Accidents (AVMA) for a statutory duty of openness, with doctors having a legal obligation of open disclosure. ‘Only this robust enforcement of open disclosure is sufficient to make it clear to everyone that cover ups will not be tolerated,’ says Peter Walsh of AVMA.
Against that, is a more measured demand for a culture of candour – ‘a culture of openness and learning that allows doctors to do what is right, and addresses existing barriers in the interests of patients and their safety.’ in the words of the MPS proposal.
Whichever route the Department of Health chooses, there is wide acknowledgement that patients’ stories must play a crucial role in bringing about the cultural change that is undoubtedly needed to make open disclosure a normal part of medical practice.
‘However informative other speakers may be, it’s the stories told by people like Clare Bowen that change doctors’ hearts and minds,’ says Stephanie Bown. ‘One patient’s story told by the person concerned is worth ten patients’ complaints in its impact on the trust board or on clinicians,’ says Stephen Ramsden of Transforming Health Ltd.
Clare Bowen has seen this change take place before her eyes when she recently visited John Radcliffe Hospital to show them the film she has made with PATIENTSTORIES. ‘We had many meetings with staff at the hospital since Beth died – always, it seemed, without any true understanding on their part of what we were going through and why we needed to hear the truth about what happened,’ she recalled.
‘But everything changed when we sat together and watched the film in which I had the time and space to tell the story of Beth’s treatment by the hospital from our point of view. For the first time, I was aware of true regret and empathy.
‘It was a huge breakthrough that gives me hope for the first time that the hospital’s policy on open disclosure will change fundamentally – and that can only help to prevent a recurrence of the kind of events that led to the death of my daughter and my husband.’