The importance of a humanistic approach to the way we care and are cared for.
By Amy Maddison
I still remember back in 2014, reading about the new hospital review here in Victoria, Targeting Zero: Supporting the Victorian hospital system to eliminate avoidable harm and strengthen quality of care. This review occurred after some truly tragic accounts of perinatal death at one of our public health services; deaths of new sons and daughters. That is heartbreaking in itself, but worse still that these were deaths that could have been avoided. It struck me down straight away. Broken families because of a broken health system. I started questioning if our healthcare system was safe for any of us then, if something like that could happen. And as the family of a consumer, if we spoke up, would we be heard? I mean really heard?
My Dad was very sick at that time, and along with work and study, we were also a family of full-time carers. The effects of mouth and then throat cancer and its double-edged sword treatments and surgeries had taken the most horrific toll on this man, who had always prided himself on his work ethic, and being ‘the family provider’ – which he was (you were Dad). I don’t think I’m ready to write about what that time and experience was like on a personal level just yet, but I will say that he had become physically weak in more ways than are imaginable. Mentally exhausted too, as were we all, looking back - and hospitals had become the monthly family outing. I remember feeling the distinction and change in our roles at those times. We, the visiting family and previous carers, were now the ones unable to do anything to help in such a busy and medicinal environment – and that feeling of helplessness is encompassing and inescapable. And then there’s the smells, the beeps, the colder fake air, the constant hum of uncertainty, the waiting and waiting.
And with that waiting, people. Lots of strangers in beds next to us, and strangers visiting these strangers. Strangers also rushed around us – kind, extraordinary, sometimes abrupt and distant, and noticeably busy medical and clinical staff. You could tell they were holding all of the to-dos of the day in their minds at once; I still find their gifted minds and hands quite extraordinary.
Depending on the day and time, and who, sometimes these nurses and doctors saw a 64-year-old, 6ft, severely underweight and malnourished man, with several comorbidities. Other times they saw my Dad, and us. They saw a human man who would cower with pain when he ate, and knew where to be as they watched a tall man unbalanced on his feet take a few steps. There’s something very special about really seeing somebody in a busy environment like that. You remember that you matter.
There were moments my Dad would light up with a smile whenever one the kinder nurses we had would come by – she smiled and meant it, and he and we knew it. I have always wondered if they found his tired demeanour but vibrant smile in those moments as special to watch as I did. Sometimes I would be the one to smile at the nurses and doctors first, because they were the ones needing reassurance in that moment – we are all human after all.
I actually think it was these moments of genuine human connection in such a flustering environment - dialogue (not just communication) and understanding with those who really ‘saw’ us – was what gave us the confidence as a family to speak up when we did. We noticed confusion (delirium) and a change in breathing had progressively affected Dad during his final stay. We questioned, ‘do we say something to the experts? Is it our place?’Yes it is, we are only (and not only) human after all – maybe they haven’t noticed(and they hadn’t). I suppose we too were experts here in our Dad’s condition, for we have known this man our whole lives.
It was hospital acquired pneumonia. This man had beaten cancer twice, but it was Dad’s weakened body that lost the battle, and we ours. There is some unspoken injustice in losing your life to the effect rather than the cause, and I’m still working through that, even more than two years on. While we couldn’t save him, we noticed a change and chose to speak up, and I wouldn’t have changed that - we were heard and believed, and they did all they could. We will always be grateful for that.
But what about those that are not heard? What about those patients and families that don’t speak up at all because they feel they can’t or shouldn’t? We are almost 5 years on since the Targeting Zero report and these initiatives, and almost 20 years since the Institute of Medicine’s ‘To Err is to be Human’ was published. Decades of the same concerns, and while a shift towards person-centred design is a significant step in the right direction, it is still far too siloed into a one-hour module or presentation; or said as a passing phrase without gravitas.
And likewise, the wellbeing of our busy and passionate workforce and unpaid carers continues to be underacknowledged. Healthcare is no place where burnout, compassion fatigue, bullying and suicide rates should be so prevalent. Doing nothing, or a slapdash band aid fix-it with empty words and no real action in response – it’s simply not good enough for healthcare workers and carers who do so much for our community. Acknowledging the humanity of us all, and that we need to approach healthcare with this view, is the only way forward. We are all only human, after all.
The reality is, if the datacontinues to identify communication breakdowns and medical errors as two of the leading causes of fatal and long lasting health issues, then yes, the potential for avoidable harm remains. And while we must acknowledge these are the exception, they are still happening, and that matters because people - family and community - matter. And this must always be what our health and human services are all about. People, people, people.
Additionally, families like my own are hesitant to speak up, to ask questions, to ‘see something and say something’. The limited health literacy of our general population remains concerning, as does an expert-driven hierarchal system which simply doesn’t work in a human-driven sector. It’s the been the way it is for many reasons, but should it be that way now that we have the facts and research supporting the important role of us all?
Like our healthcare workforce and their extraordinary minds and skillsets, there’s also significance in acknowledging the expertise of family and carers; in appreciating that shared experience and co-design are a part of the solution, and not the ‘rolling of the eyes’ we can make them out to be.
I write this because conversations on this need to spark and continue; and if lives are being lost because of a broken system, we simply must change things. We are not there yet, not even nearly there, but the more we speak up, the more we are heard. And being heard is a very powerful thing.
About the author:
Amy Maddison is the founder of String Words, a unique social enterprise specialising in storytelling and a more holistic approach to Person Centred Design. A passionate advocate of the Gathering of Kindness, Amy also works regularly in the Patient Experience team at a large Public Hospital, and as a Researcher and Storyteller for Deakin University.