1998, 227 p.
When I saw that this book was my bookgroup’s selection for May, I wondered how I would cope with it, as Dad died at home in January this year. My qualms might seem rather paradoxical, given that I chose to read Pat Jalland’s Australian Ways of Death right in the midst of Dad’s passing. Somehow that seemed different. I wanted to read Jalland to contextualize what I was feeling within a historical frame of distant times and foreign mindsets – a comfortable and comforting exercise for me- whereas these were contemporary, personal stories told from my own city. I felt that I could trust Jalland’s distance and span as a historian, but I didn’t feel the same way about a journalist with an eye to the good story. As it turned out, the book wasn’t as confronting as I feared it might be, but my misgivings were not assuaged by the time I finished it.
Lisa Birnie was a writer-in-residence who spent several weeks at McCulloch House, a palliative care centre attached to Monash Medical Centre. There she spoke with patients, families and staff members while seeking the answer to her question: “Is euthanasia desirable or necessary or could accessible palliative care supplant the need for it?” As the weeks went on, and as she met more patients, her question changed to “Should a rigidly circumscribed law be drafted that permits patient-requested euthanasia in cases where all palliative care practices to control pain have been unable to do so?”
The fraught question of euthanasia was one that she had grappled with in her earlier book Uncommon Will: The Death and Life of Sue Rodriguez (1994), where she followed the legal battles of a young woman with Motor Neurone Disease to commit suicide with a doctor’s assistance. She came away from that case concerned that euthanasia would inevitably be used against people who did not want it, and that it would pre-empt further research and provision of good palliative care. Moreover, by her own admission, Birnie acknowledges being ‘spiritual’, and I think that both these dispositions drove her to explore and frame her questions as she did.
The book is divided into eleven chapters, each fronted with an epigraph and a short title: Hope, Denial, Searching for Meaning, Pain, Living Fully Until Death, Attitude, the Caregiver, Faith, Last Rites, Grief and Love, The End and the Beginning. Each chapter is similar in structure, starting first with the story of a particular individual, their illness and their family, followed by an interview with a staff member. I felt just a little voyeuristic, prying into this most intimate and physical of events, but there was much to think about too. There was young Michael, aged 30, dying with melanoma shortly after his second child was delivered by caesarean so that he could see him before he died; or Adrian, also in his thirties, whose mother clung to the hope of a miracle. There were people who kept having more and more surgery; a woman who wanted her daughter and friend to be part of her death; a man with sarcoma of the mouth who drew from the strength of his brother; and most memorably a driven business-man whose anger at his illness was an extension of his need to control his family and business as well.
Her approach is anecdotal, not analytic. Only in one chapter did she venture beyond the walls of McCulloch House to consider palliative care in the home (as we did with Dad). I feel that she was somewhat ‘captured’ by McCulloch House and her feelings about palliative care in the home are equivocal. She did not ever come to a definitive view. She was more conscious of the limitations of pain relief for a small percentage of people and her concerns about euthanasia becoming normalized still stood.
This book was written twenty years ago. I wonder how she would feel about the Assisted Dying legislation passed in Victoria last year. She alluded to negative experience from the Netherlands, which does not tally with my perception of the overseas data presented to the enquiry and legislation last year. Most particularly, her book deals only with patients dying with cancer. She does not deal with patients with dementia, or MND and other degenerative diseases (not that the Victorian legislation gives any comfort to dementia sufferers and their families.) By the end of the book, I was left feeling that she had not really shifted all that far in her attitudes from where she was at the start i.e. a spiritual woman concerned about the ‘slippery slope’. On the other hand, I was pleased that the question was still left open in her own mind. I do wonder, too, if she’s still alive (she was born in 1928, although still very actively writing in 2014) and whether she still feels the same way.
It was interesting (and somewhat sobering) to listen to our book group discussion, amongst a group women aged mid-60s to mid-80s. I was a bit surprised at the strength of feeling against assisted dying held by some of our members, reflecting the strength of my own feelings to the contrary, I suspect.
Read because: CAE bookgroup
My rating: 8? It’s difficult to separate my own feelings about her conclusions, from my feelings about the book
I have added this to the Australian Women Writers Challenge database. To be honest, I hadn’t heard of her before and I didn’t realize that she was Australian. She was born in Australia and started her career at the Warrnambool Standard, then the Hobart Mercury and Argus before travelling to London to cover royal events. She then travelled to San Francisco, and later lived in Vancouver.
There’s a podcast from 2014 where she talks about her journalistic career at https://soundcloud.com/cjsfradio/sxw-oct-15-lisa-hobbs-birnie