Dr David Galler on life, death, and things that matter
Tiara was a bright, 20-year-old commerce student when she had a seizure that stopped her heart. When the paramedics arrived to shock her back to life, her skin was blue.
At south Auckland's Middlemore Hospital, she was found to be so brain-damaged that she could not speak or move voluntarily. Her family prayed for a miracle. It was Dr David Galler's unenviable task to explain that the girl they loved was never coming back.
The shift was gradual. Her little sister, especially, was hard to convince. But as Tiara slipped away, the family began to share stories of her childhood and the jokes and pranks that shaped her life. When she passed, her aunt took comfort in knowing it was on "the ninth day of the novena".
In his 25 years as an intensive care specialist, Galler has seen a lot of patients, like Tiara, die. His memoir, Things That Matter: Stories of Life and Death, tells some of their tales.
It begins with his father being felled by a heart attack, and ends with his mother - who survived Auschwitz as a child - succumbing to cancer. In between there are aneurysms, and staph infections, and the devastating, all-consuming complications of obesity-related diabetes.
Some patients have had the odds stacked against them since day one. Some are too young for their deaths to make any sense. It sounds like a hard read, and in a way it is. But more than that it is a love letter to humanity, and to families, and to life.
In the intensive care unit, the things that matter most to people are amplified. Like Tiara's aunt, many people turn to religion to help them come to terms with catastrophic events.
Galler himself is not religious, but he understands that impulse. "I actually think it's quite a nice thing," he says. "It's a shame we don't think about that more often."
Relationships become more significant when faced with the prospect of death. So, too, does treating people with respect "and actually standing up for them when things aren't right".
Wouldn't it be magic, he says, if we did that not just in a foxhole, but throughout our entire lives? "I think if we had that a little higher up in our thinking we would be a lot better off."
A chapter in the book is dedicated to a man named Carlos, a cyclist who was critically injured when he was hit by a truck. He spent an excruciating three months in hospital, fighting infections and setbacks, and a further 15 years re-learning how to walk unaided.
But Carlos says he'd never opt to turn back the clock. He believes himself a better man now than he would ever have become without the accident.
The support of others can fuel that resilience, Galler says. People without material wealth – in particular, low-income Maori and Pacific families – often adapt to loss or suffering more smoothly than the well-off, because of their strong family and community ties.
"It's kind of nice to see that, because it again reminds you of what is important."
Things That Matter was inspired by Dr Atul Gawande, an American surgeon and researcher, whose latest book, Being Mortal, wrestles with the complexities and dilemmas around end-of-life care. It was written "for ordinary people – certainly not doctors".
Galler's hope is that readers are empowered to seek more control over their lives and their medical care. To ask the big questions: How are we going to die? And what do we want out of life while we're here?
"All those preferences that people have, we talk about them at the end of life, but the idea of people having preferences goes back right through the whole system," he says.
"The principles of how we think about end-of-life care - how we age, where we live - actually those principles need to be embedded in the way we think through the entirety of our whole life."
He'd also like readers to reflect on what matters in a wider sense - not just to themselves or their families, but to society as a whole. It's a conversation, he says, that we desperately need to have.
To Galler, it is unacceptable that people are sleeping in garages. It is unacceptable that people are getting "poorer and poorer and fatter and fatter".
The health system, he says, cannot fix all the world's failings; certain conditions must be improved if huge swathes of our society are ever to have a chance.
"I commonly talk about health in terms of 'health for what?' What's the purpose of having a health system?
"Yeah, we want people to be healthy, but why? To sleep in cars in south Auckland? To live in s... homes in Porirua and Waitangirua and Mangere? That's crap, isn't it. So, you know, there's a purpose here."
EXCERPT: THINGS THAT MATTER
THE ULTIMATE GIFT - LIFE
For people ... who have suffered a catastrophic neurological event, artificial ventilation and other kinds of organ support are not only used to buy time to diagnose, provide care, determine prognosis and allow family and loved ones to gather and come to terms with what is going, but also to give them time to discuss organ donation with their families.
The actual diagnosis of brain death must be made by two medical practitioners and is, in effect, a diagnosis of death. The time that brain death is determined becomes the official time of death recorded on a death certificate, despite a patient's body still being kept alive in an intensive care unit.
Diane, Tavita and Moana had all collapsed suddenly and within seconds lost any chance of recovery. For their families, this was a time of overwhelming shock and disbelief. Their grief is palpable and their emotions raw. It is a time that brings families and friends together to support each other, putting aside many of the things that may have kept them apart before. It is a deep dive into uncharted emotional territory in which great distances are covered in a short space of time. At some stage in this torment, when the winds begin to settle and with the right facilitation, it can become a time for reconciliation of differences, reminiscing and, later, a time for some humour too.
We, the doctors and nurses, travel that distance alongside families doing what we can to help, inform and comfort them. It is a time for truth-telling because there is no turning the clock back. None of us are Superman, able to spin the Earth backwards in order to turn back time and save Lois Lane's life. We live in the real world.
Right from the start, the conversations we have set the tone for what's to follow. Never easy, these need as much care and preparation as if part of a surgical procedure. How we proceed together is determined by how well we connect, and the way we recognise and address the things that really matter. We have come a very long way since that day when my father, out of huge frustration at the limited but strictly enforced visiting hours, climbed the drainpipe at Wellington Hospital to get a glimpse of my brother Les lying there in traction. That hospital treated my father badly and he never forgave them for that.
What you reap is what you sow. Kindness, compassion, expertise and honesty deliver great rewards when it comes to hard conversations. So too does time spent to help families better understand what has happened and what the consequences of those things are, especially when a terrible outcome is expected. In practical terms, that may mean we meet formally with families many times in one day and, in between, have more conversations with small groups or individuals to get people to a common understanding. Coming to terms with a terrible truth takes time and it is our job to help that process along.
As we get a better sense of the patient's condition and prognosis, what we discuss in the more formal family meetings evolves over time. I do my best to be totally transparent when it comes to sharing information to help families come to terms with what has occurred and to better understand what I am saying. If I suspect that a patient might become brain dead, I will usually mention that as a possibility. Commonly families will pick up on this and, if it is appropriate, then we will embark on a more detailed discussion. With Diane's family this process was prolonged and delicate.
There can be no such thing as 'normal' or 'expected' behaviour from parents about to lose a child. Other issues can make the process all the more complicated. In Diane's case, her mother and father had separated several years earlier and it was clear from the outset that they didn't get on. She spent time with each of them in a shared-care arrangement. One week with her dad, who had remarried and now lived with his new wife and her three children, and the next week with her mum in the old family home. When she collapsed, Diane was at her mother's house. Sadly she was alone as her mother was at work.
After 36 hours with us in the ICU, despite the breathing tub, drips and monitors, Diane still looked like Diane. Her hair recently washed, she looked even more peaceful than she had when she was first admitted. By this time I had met and spoken with her family many times and they now seemed much closer to accepting the possibility that Diane may not do well.
Even though it was not common practice then, I asked the family whether they would consider joining me and a colleague as we did a further formal assessment of Diane's neurological state and level of consciousness. They agreed but before going ahead we found ourselves in another conversation about brain death and organ donation.
At that time, I strongly suspected that Diane had become brain dead but it was her mother who raised the possibility of her becoming an organ donor. There is no one right time to broach such a sensitive issue with a family in a position like this, but the right time always becomes obvious, at least it does to me. When that time comes I do what I can to provide families with as much information as I can so they can make the right decision for them. Despite always being an advocate for donation, in the early part of my career success was defined by a family agreeing to organ donation and failure by their refusal, but with time I have become less invested in the outcome, wanting only to do the right thing by the family carrying the awful burden of this sudden loss.
- From Things That Matter: Stories of Life and Death, published by Allen & Unwin, $37
- Sunday Star Times