I STARTED working with children with leukaemia and other cancers in 1998. On my first day on the job, I realised how extreme the environment was where we had to restrain these children to do procedures on them.
Over the course of their cancer treatment, which lasts 2–3 years, they have repeated procedures, such as bone marrow tests and lumbar punctures. The sedation we were using was not managing their pain adequately. The children were often highly stressed and upset during the procedure but were often sick with anxiety for days before any visit.
I was concerned about the impact of this stress on the families, so I met with a group of parents and talked with them about their experience of their child undergoing procedures. We called ourselves “Together We Achieve”. We’d grab a plate of sandwiches and I would ask them: “What is it like when your children come in for these procedures?” And they’d say: “Actually, it’s the hardest part of the cancer journey for us”. But none of them had ever complained.
Blessed with the unwavering support of the visionary hospital CEO, we set out to change our small part of the health care system to a totally different environment. We started to make improvements based on feedback from the families. I became intrigued by patient- and family-centred care and the value we could gain from partnering with families in their care. The families knew about many aspects of the hospital system of which the health professionals were simply unaware. I realised that the expertise that the families brought to the table could improve our efficiency, reduce costs, highlight gaps in the system, improve safety and improve patient and staff satisfaction. Over a decade, the group drove a transformation so striking that children attending the hospital for a routine visit were known to complain to their parents if they didn’t have a lumbar puncture scheduled.
One important aspect of this transformation arose when families talked about the challenge of being in hospital environments. “It’s not somewhere you feel at ease and comfortable.” The sounds and the “look” of hospitals raise people’s anxiety when they are feeling vulnerable. We talked about how we could change this for patients and families.
With the help of many of Australia’s foremost composers and musicians we set up the Hush Foundation to transform health care culture and environments through the arts. Since 2000, we have produced 15 albums of music that are now used across Australia to reduce stress and anxiety in health care environments.
We found that when you bring creative people into the clinical space and they experience it, as artists and composers, they can see what is needed, and use their expertise to make it more calm and optimistic. It is a process that has been quite magical.
The effect of the music on patients and families is profound. But then I noticed something else. The music affected our team in the operating theatre – I could see greater respect being built between team members.
It’s about feeling cared for and looked after. Musicians, composers and other artists would meet the staff and comment: “You are doing an unbelievable job. I’m so grateful for what you do, and I’d like to help”. Then they made this beautiful music for us to play in our workspace. Oftentimes, the whole “feel” of the room is transformed; teamwork is visibly strengthened, and what I see as a “culture of kindness” develops. This culture has helped us to be 100% focused and engaged in our work. We all feel safe to speak up in these spaces, and we know that’s important because our patients’ welfare depends on it.
In 2011, playwright Alan Hopgood, AM, joined the Hush team by crafting patient and staff stories into a dramatic play called Hear me. The play explores issues of communication breakdown, bullying and poor staff behaviour, patient-centred care and patient safety. Each performance is followed by a discussion forum. Qualitative analysis of 8000 audience comments and suggestions for improvement are currently being undertaken. The play has been performed over 130 times in hospitals around Australia and internationally.
Themes emerging from the comments show a widespread concern about a health system where bullying is common, staff often feel undervalued in their organisation, patients may not feel they are being listened to and kindness can be hard to find.
Bullying, harassment, poor staff culture and health professional stress are all topical in the literature and in the media. It is well known that these cultural issues impose high costs on health organisations through poorer staff performance, absenteeism and sick leave. Poor staff behaviour is also directly linked to worse patient outcomes.
Yet, despite these poor outcomes having been known for well over a decade, staff at all levels have been slow to accept this link. Reporting such behavioural problems is virtually impossible. As health organisations have slowly responded, the typical response has been more policies and procedures on bullying and harassment, zero tolerance statements and “weeding out the bad apples”. These responses seem like they would help, but they are all negative and reactive. They can be ineffective and even counterproductive. And they are inconsistent with what we know about behavioural change; namely, that interventions that reinforce positive behaviour are often more effective and better accepted than those that punish undesirable behaviours.
What we need to do is change the conversation and talk instead about a kind health system and how we may get there. Because, at the moment, good as parts of it are, health care organisations are often not great places to work. They can be hard places for the patients and families when they’re at their most vulnerable. They are not nearly as safe as they could be. But the answer is not to focus on the negative interactions around us. By focusing the conversation on where we want to go – towards a kind healthcare system – we can have a far greater impact. This is the mission of the Gathering of Kindness, a week-long festival that brings together people from all walks of life to continue the conversation.
Kindness does three vital things. Kindness makes best use of your team – if you are kind to those around you, then they will be there to provide support and assistance and kind behaviours in return. Kindness brings the safest environment – by fostering a culture where people aren’t afraid to speak up, mistakes or risks can be dealt with openly, and before they have consequences. Lastly, kindness creates unexpected wonderful moments of joy – seeing children coming running into the waiting room, full of excitement to watch the musicians is something I will never forget.
Australian nurse ethicist Megan Jane Johnstone, who has done extensive studies on kindness and generosity in health care, has noted that the renewed emphasis on these qualities is viewed by some as “misguided” – even that “health professionals are just ‘too busy to be kind’”. She goes on to say that there is now a growing recognition that kindness has restorative and even curative possibilities in health care. Kindness needs to be “instated as an essential adjunct to health care interventions”.
Embedding kindness in the health care system can be done. As with most major changes in health care, it helps if hospital boards are more proactive in assessing their role. It also helps if leaders have a vision of what can be achieved. But it starts with individuals – colleagues showing a level of kindness and care towards each other which will flow on to the patients and families. Let’s talk about kindness performance indicators instead. Staff and patient perceptions of cultural and behavioural issues can be part of the performance assessment at all levels. It can be transformative to teams and make a big difference to the joy and meaning in our work and to the lives of the people in our care.
Dr Catherine Crock, AM, is a physician at the Royal Children’s Hospital in Melbourne and chair of the Hush Foundation, which is holding a Gathering of Kindness week from 30 October to 3 November, 2017.
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