Before we say goodbye

Sean Davison, author of <i>Before We Say Goodbye</i>, talks about his diary of time spent with his dying mother Pat (pictured here, left, in a photo taken from his book) that raises issues about voluntary euthanasia. Photo / Supplied

On the day she died, Sean Davison's 85-year-old mother, Pat, had cried out: "I want to die! I've had enough!" By anyone's reckoning, with terminal cancer and having lasted 33 days refusing to eat, she had.

But then Pat, herself a doctor, asked something Davison considers to be "the most profound line that has ever crossed her lips".

It's a question born out of unbearable frustration, of a planned death gone horribly wrong: "Who caused all this?"

There are a number of answers.

Pat herself - when she wrote her will - said: "I have decided to die by inanition [exhaustion caused by lack of nourishment] ... I wish to be the only one to decide when I stop fluids."

Davison still tortures himself with a question. Was his mother's decision motivated by his suggestion she might have to briefly go into a hospice while he returned to South Africa to arrange extended leave?

"My inside feeling was that might have triggered the hunger strike," he says. "It was quite devastating for me to deal with."

At the time, however, Davison thought his mother was appealing to some kind of greater power. Which was odd because neither he nor his mother believed in God. But, as sole caregiver watching his mother's slow decline - "she is consumed by pain as her body decays" - he acknowledges he's trapped in turmoil.

"It was very, very emotional. I was living her life. When she slept, I slept. It was almost as if when she was breathing, I was breathing. The only difference was that when I was eating she wasn't."

Their lives had become so entwined Davison even tested his mother's morphine supply. "Naively, I thought I must try one so I know what's going to happen to her. But it was a mistake. It was a very addictive drug. It was foolish."

It didn't occur to Davison that his mother's question - "Who caused all this?" - might have been about her predicament. That no one could, or would, help her die. Two days earlier - Day 31 of only water: half a cup - his mother asks if any doctor is going to help her.

He decides to tell her what she already knows: "Mum, it's never going to happen. Doctors think if they stall long enough, people will die. They are more than happy to play God by keeping people alive long past their natural time, but they will never play God by easing their suffering, by helping them go a little earlier."

Pat follows up her rhetorical question with a more down-to-earth instruction: "Bash me on the head!" Eventually she rewords it: "I want to die tonight. I feel dreadful. I feel pain everywhere, and I can hardly talk."

Davison, a professor in biotechnology at University of the Western Cape in South Africa, is here for the launch of his book, Before We Say Goodbye, a diary account of the three months leading to his mother's death in 2006.

How did he feel about what his mother had asked on that fateful night? "When your mother asks you to kill her, it's extremely difficult. With the unravelling going on in my head, it was extremely stressful. I questioned her asking me. I was taken aback. But on reflection I didn't blame her at all - she had no one else to ask."

Just what happens next is unclear. His mother asks for glass of water, which he gets. "I held the precious glass to her lips ... As I went to rinse out the glass I thought how devastated she would be if once again, after all this, and after all we had just been through, she were to wake up in the morning yet again ..." Later that night his mother dies.

Keeping it vague is deliberate says Davison. "Clarifying it makes it too much of a focus. I want to focus on the debate that this book will hopefully stimulate, rather than have the public wondering what happened. It will be the obvious question. But the next obvious question will be why was she in that situation anyway?"

Euthanasia is an area where there are always going to be ambiguities, silences and evasions - whether for emotional or legal reasons.

Davison says he's always kept a journal or workbook at times of crisis, like when he was having a difficult love life. He says it comes from being a scientist, in his case specialising in forensic DNA analysis. His work includes helping to identify bones of anti-apartheid activists murdered by the secret police and the development of a DNA test kit for identifying multiple contributors to a rape scene - South Africa having one of the highest incidences of multiple rape cases in the world.

"When everything is logical you're happy. If it's not logical, the way to make it logical is to write it down."

He recognises that the diary as a literary device can be a very raw telling of a story - in his case involving a brother and two sisters, other family and friends. "We all have such different thoughts from what we portray to the world. In a diary you tell the truth because only you're going to read it - why would I lie to myself? So I would say things that I wouldn't dream of saying to anybody else."

But his publisher Christine Cole Catley advised certain things should come out. "Chris uses the expression 'compassionate truth'. You tell the truth but you don't go out to hurt people. The book is very much about my mother and the shocking situation we found ourselves in. I didn't want to cause offence to my siblings or my mother's friends."

Which is not to say the account is bland - far from it. Davison covers the ground of family dysfunction, disagreement and tension under the cloud of approaching death as a narrator very much involved. "Parts I look at and say I'm not entirely happy showing the world that part of my life. But I wanted to keep it as a real story."

What would his mother have felt? "I feel she [would] be very happy with this book because of what it is trying to do in terms of changing the laws that would not allow the situation she was in to happen again."

With hindsight, what does he think about his mother's choice? "She saw her life fading away. She couldn't enjoy the things she normally enjoyed - painting, she was losing the ability to read and she loved reading, food tasted bitter. She wanted to die in a dignified way when she was ready and she couldn't see how to do it - I admire her courage. It was clearly the wrong decision but you had to admire it."

Why was it wrong? "It was wrong because we hadn't investigated what happens when you stop eating. She assumed, and I accepted it, that she would die in her sleep one night. But she would wake up in the morning and often her greeting line would be, 'Oh I'm immortal and I can't understand why I don't feel hungry'. Days would go by. 'How many days is it?' she would ask. She just couldn't believe she was still alive - this was after day 10 or 12."

His mother was further horrified about when she learned from the district nurse about the longest case they had on hospice records - a Chinese woman who survived for 21 days on water alone. "She was determined to die and she thought this was a dignified death and it backfired totally."

Davison says his mother's medical knowledge worked against taking an overdose. "She was petrified of something going wrong if she took the wrong amount. If you take too much you can vomit it up and what's left behind can leave you paralysed or brain-damaged." He thinks his mother's 15 years as a psychiatrist at Seaview Hospital in Dunedin, where there are many geriatric wards, may have also influenced her.

"She was dealing with very elderly people who were brain-damaged - she knew what could happen."

But Davison acknowledges his mother did have options and knew what was a lethal dose of morphine, and that by hoarding her supply for pain relief, she had a sufficient amount.

"She did and she still kept holding on - which shows you the difficulty of letting go of life. She kept holding on. I realised what was going on - she wasn't quite ready."

Davison says though he had come to New Zealand expecting his mother to die, he wasn't prepared for what happened and the experience has changed him. "It makes you're more reflective on life and beyond life ... acceptance and resignation. You are a different person. It's hard to say in words. You feel more enlightened, more aware of your mortality."

He doesn't have particular views about how euthanasia might be legalised, but says his mother's experience serves as a graphic example that something needs to be done. "Dying peacefully in your sleep seems to be the catchphrase when people die. I wonder how often it actually happens."

Davison recognises too that doctors have little leeway. "I feel sorry for doctors. They are dealing with patients similar to my mother begging to die, and they can't do anything. Their hearts must be bleeding - they want to do something but they're not allowed to."

No happy ending then. Davison says the book is his contribution to the euthanasia debate. But he's well aware politicians aren't lining up in support.

"They don't get votes for suggesting people take their own lives."

So if someone close to him with a terminal illness asked him for help ending his or her life would he say yes or no? "It would depend on the situation, but if I was absolutely certain they wanted to, in principle, I believe that person has a right to die. I have to be very careful what I say. In a hypothetical situation I would say yes. I would help."

Before We Say Goodbye, by Sean Davison, Cape Catley, $35.99.

Sean Davison will be part of a panel discussion on some of the issues around physician-assisted suicide at the Auckland Medical School's Robb Lecture Theatre on June 23 at 5.30pm. He will also be speaking at events in Wellington on June 24 and Dunedin on June 25. More information at www.capecatleybooks.co.nz