Building Empathy in Medicine Using My Big Mouth
By Carol Duncan - 12th June 2012
I talk for a living.
It’s perfect. I get to interview really interesting people about anything I want. And then I get paid. Of course, it’s not quite that simple. Sometimes there are emergencies to broadcast, a politician to be pushed for an answer, sometimes you have to talk to people you’d really prefer not to, or report on a local issue that may be causing pain within the community. Every day is different, and it is my great privilege.
I often get asked to MC events - dinners, conferences, etc - or to be a guest speaker on a topic of my choice at seminars and so on. I think I do a pretty good job of it. Over the last few years, I’ve been increasingly asked to speak at conferences pertaining to neonatal surgery issues and research. Not because I know anything about neonatal surgery, but because I’m a parent of a child who has undergone major heart surgery and spent time in a neonatal intensive care unit.
A few years ago, I wrote a blog post about my son, or more particularly about our experience as parents of a sudden, unexpected health crisis for our newborn son. I wrote about what it was like for us to be suddenly dropped into a parallel universe of fear as our infant child went from ‘perfect’ to ‘this is not compatible with life’. Some of you will have been there, too. But fortunately, most people haven’t. What this means, however, is that for the vast majority of us there is an enormous disconnect between our experience of our relatively happy, safe and non-challenging lives, and the reality of just how ugly and frightening life can become. In an instant. It always happens to ‘other’ people, doesn’t it.
I’ve been interviewing people for over 20 years. There’s not much I haven’t heard, or seen. I’ve interviewed (and wept with) a mother who lost three of her four children to an inherited disease. I’ve interviewed (and wept with) a mother whose two children were murdered by their father. I’ve interviewed (and wept with) a father whose adult daughter took her own life just a few months after having her first child. I’ve attempted to resuscitate my own mother. And more. Much, much more. But nothing had prepared me for the news that the cutting of my brand new son’s umbilical cord had, in fact, started the race to save his life.
This story isn’t about that, though. This story is about why I love my big mouth.
The first time I was asked to speak publicly about our experience, I started to speak, and then gasped for air - tears streaming down my face, as I tried to explain to a group of intensive care specialists and helicopter pilots just what they meant to us, for their pivotal role in saving our son’s life. I’d have given myself 4 out of 10 for that one.
Since then, I’ve delivered a presentation which I suspect many clinicians and researchers find a bit confronting. What I tell them is how to do their jobs better. I tell them how they got some things wrong when we were in their care. I tell them about the careless things that were said, that hurt me to this very day. I tell them about the things they didn’t do, that they should have. But I also tell them how immensely grateful we are to them for their efforts in saving our son. I tell them that I think they perform miracles. Or voodoo. Or something. I thank the surgeon for having the courage to put his great big hands into my son’s tiny little chest and for having a go. Because without the courage to have a go, my son wouldn’t be here.
My aim is to make them cry. To hurt them. Just a bit. I will make them laugh first because I’m good at that. I think of myself as a bit of a cuckoo in their nest. Or their devil’s advocate. A conference room full of clinicians, researchers, specialists - highly-trained and extremely knowledgeable medical experts who live in a world of machines, numbers, facts, figures and powerpoint presentations that go on and on and on ... A world where words like ‘morbidity’ and ‘death’ just state a fact. Oh, there are babies in that mix, too. I want them to cry because I want them to forget for a moment their comfort level with the environment that they work in every day.
A neonatal intensive care unit (or any intensive care) is a pretty overwhelming place for someone who has never been inside one. There are racks of machines and medications surrounding your loved one - none of which make sense to you. It is a frightening and alien environment. Unless you work there. In which case, it becomes your ‘everyday’. But not mine.
I want them to remember what it was like before they’d heard of terrifying conditions that can kill our babies or cause them immense harm. I want them to remember the time before they’d ever seen a cannula, catheter or pacing wire. I want them to know what it’s like to feel afraid, to feel deeply fearful that your child is going to die. I want them to feel my anxiety and distress. And my helplessness. When they laugh I know that they feel comfortable with me, that they are accepting me into their world of medicine for just a moment. When they cry, I know that they have understood, that they have been able to board the roller-coaster with me, and experience the fear that it may just fly off the track and result in death.
These days I make it through my presentation without tears, but it always exhausts me. There’s a fair bit of theatre involved in ensuring that I deliver an incredibly powerful message to them. Does it work? So far, yes. How do I quantify that little piece of one-woman research? Because when an experienced intensive care nurse, or clinician, or neonatologist comes up to me in tears and tells me that I have changed forever the way they do their job, I feel an enormous sense of relief that maybe, just maybe, one of life’s most terrifying challenges will be a tiny bit easier for the next parents who have to go through it.