In the third chapter I explore ‘a culture of continuous learning’. I share two contrasting stories; one related to Johns Hopkins Hospital in Baltimore, US, and the other concerned with the care of Sam Morrish and his family in the NHS.
The mystery that motivates most of us who work in patient safety is that why after more than two decade’s worth of energy and resources devoted to patient safety, progress has been so slow.
The Johns Hopkins story is not a new one to those that work in patient safety – the stories of Josie King ad Ellen Roche – but it is the contrast with the story of Sam Morrish that resonated with me. One organisation accepting that they had let down Josie and her family versus a system that failed to respond to Sam’s needs as effectively as they should and a failure to respond to the needs of his family when he died. Instead of seeing this as ‘one of those things’ Johns Hopkins Hospital wanted to learn from Josie’s death and set about investigating exactly what had happened and why she died. Unprecedented at the time the hospital involved the family. They went to their home and apologised for her death and told them they would tell them everything they knew when they knew it. The family were communicated with every Friday morning, even when there was little to report. The investigations into Josie’s death found that she had died of dehydration as a result of sepsis, a hospital-acquired infection. Similar to most patient safety incidents, there was much more to why Josie died than the care she received. Communications had failed, and importantly Josie’s parents were not listened to. Josie’s parent’s repeatedly told staff that their daughter was thirsty but these pleas were ignored.
In the same year Ellen Roche died of lung failure after inhaling an irritant medication while participating in an asthma research study. These two deaths propelled the hospital to what some consider the most significant culture change in its history (Nitkin and Broadhead 2016). Johns Hopkins began treating safety like a science, collecting data to find, test and deploy systemic improvements. Safety has become their top priority. Peter Pronovost one of the clinicians who worked at the children’s unit where Josie died, viewed these events as a moral dilemma. The hospital had to make a choice, were they going to be open and admit their mistakes or were they going to chalk it up to one of those things and move on. In his words… they decided to start talking.
Josie’s parents channelled their grief into action and created the Josie King Foundation and the Josie King Hero Award for caregivers who create a culture of safety and gave the first one to Peter Pronovost. Sorrel King offers this advice to everyone involved in patient care: “Slow down and take your eyes off the computer. Look at the patient in the bed and listen. Listen to that mother who is saying something is wrong” (Nitkin and Broadhead 2016).
In our work at Sign up to Safety we work with a number of patients and their families. One of the things we hear time and time again is an ask to be treated with care and kindness. When things have gone wrong instead of closing up they desperately want you to reach out, say sorry, tell them what is happening and what you know and how you will do your very best to find out what happened. Crucially listen to them – they have insights, their own side of the story, facts that no one else will have. Give them that voice and have a conversation between you and them; one human to another. Listen to the mums, the daughters the husbands and the patients themselves. If they are worried or question an action, listen. Don’t be too proud and too late. Make patients and colleagues feel their voice is worth listening to.
This is what Sam’s parents Scott and Sue needed.
Sam died at the age of three from sepsis in December 2010. An investigation in 2014 found that had Sam received appropriate care and treatment, he would have survived. However, this investigation failed to provide clear answers as to why Sam died. Sam’s parents asked the Ombudsman to undertake a second investigation to find out why the NHS was unable to give them the answers they deserved after the tragic death of their son. The second investigation found a failing system. Sam’s family should have been provided with clear and honest answers to their questions at the very outset.
As Sam’s parents say.. they ‘trusted the NHS and trusted those that work in it to find out what had happened and why’. This should be at the very heart of any investigation. This includes informing the family from the outset and assigning someone to answer every single question they have and to follow them up at regular intervals as they did at John’s Hopkins. It should never be left to patients, or grieving families to drive the process for learning. Scott sums it all up with the following:
Patients who ask questions can be perceived as a threat, especially if those questions might draw attention to the NHS’s own part in clinical failure or untoward clinical incidents. This can even happen when, as in my case, the motivation was purely a need for understanding, and awareness (on my part) of the possibility of learning. I was grieving, but consistently articulating no interest in blame.
Patients and staff can find themselves isolated, in a no-mans land, their concerns ignored, whilst everyone cedes responsibility to ‘processes’ and ‘systems’ without taking responsibility for either. When no one feels responsible, everyone feels powerless. Actions taken, decisions made and conclusions drawn, if inept, create more frustration, fear and sometimes irreconcilable differences. It also leads eventually to the despairing and fatalistic acceptance of avoidable harm; the notion that there is no need or point in investigation: there is no expectation of learning. It gives rise to a universal feeling of powerlessness where patients do not think it is worth the phenomenal risks involved in raising concerns, because staff seem (and feel) powerless to help; complaints handlers only find fault in systems, processes and services; and no one is deemed responsible for anything. When responsibility is ceded to large and complex processes and systems but no one takes responsibility for them: no one is accountable. This is not a figment of complainants imaginations.
The consequences are profound, insidious and pervasive to the point where they undermine the NHS by alienating patients from staff, and staff from each other, all the time eroding trust and respect in all directions. The same alienation and erosion of trust and respect occurs between commissioners and providers, and between both with their regulators. Nothing is learnt. Nothing changes.
It takes time, effort and determination, to understand all of this, but as the picture becomes more complete, it is no longer a mystery, or even a surprise that people we know to be kind, caring and good, can do or say apparently senseless things which, unintentionally, can cause additional suffering. The only way I can understand such paradoxical behaviour is in terms of culture, which can be paraphrased along the lines of “Blame the system. It is not our fault. It is the way we do things around here.”
Nitkin K, Broadhead L (2016) No Room for Error [online] available at http://www.hopkinsmedicine.org/news/articles/no-room-for-error
PASC (Public Administration Select Committee) (2015) Investigating clinical incidents in the NHS – Sixth Report of Session 2014–15 Report [online] available at: http://www.publications.parliament.uk/pa/cm201415/cmselect/cmpubadm/886/886.pdf
PHSO (Parliamentary and Health Service Ombudsman) (2016) Learning from mistakes; An investigation report by the Parliamentary and Health Service Ombudsman into how the NHS failed to properly investigate the death of a three-year Child – [online] available at http://www.ombudsman.org.uk/__data/assets/pdf_file/0017/37034/Learning-from-mistakes-An-investigation-report-by-PHSO.pdf