THE DAMAGE DONE
Edited by Andrew Denton
Go Gentle Australia
What can be said about a collection of stories of family members, friends and patients who have died with difficulty and the wishes of people living with significant health challenges that are collectively and squarely aimed at furthering the debate on euthanasia and assisted suicide?
The book, The Damage Done, published by the latest pro-euthanasia and assisted-suicide organisation, Go Gentle Australia is, indeed, a collection of difficult stories. They are, at times, very difficult to read: raw emotions, difficult memories, much pain and anguish.
On the flyleaf, Go Gentle Australia says that it has been “established to help relieve the distress, helplessness and suffering experienced by Australians with untreatable or terminal illness and also their families and carers”.
A noble aim and one shared by medical and nursing practitioners across the country – especially in palliative care. But that does not tell the full story. Which is why I find it difficult to reconcile these difficult stories with the very clear intention of that organisation: the passage of euthanasia and assisted-suicide laws.
New Zealand palliative care doctor and chairwoman of the Australian and New Zealand Society of Palliative Medicine, Amanda Landers, recently gave evidence before a New Zealand Parliamentary Committee on this subject. Her own experience in “dealing with about 5000 deaths in palliative care throughout her career” led her to observe: “In my job I have a lot of people asking me about euthanasia. When they say that to me, I say, you’re so brave, but why do you want that? We dig down … almost everybody changes their mind in my experience.”
Other specialists have told me that they have had few, if any, serious requests for euthanasia over their careers. Waipuna Hospice (NZ) chief executive Dr Richard Thurlow echoed Landers’ testimony: “From my experience at hospitals and hospices around the country, is that when you get that life-limiting condition, or given there is no further treatment discussion with your specialist, initially there is a loss of hope and often people do question, what is life all for and everything else like that. But … after a couple of weeks of being looked after by the hospice, anyone who has any questions of wanting to have an assisted death in some way actually changes their mind.”
So, what’s really going on with the stories in The Damage Done? There is a clear disconnect between these personal reflections and professional best practice here. Whatever the full answer, it is far too simplistic (and plainly wrong) to conclude that, because many, if not most, of the people in these stories are asking for legislative change, euthanasia and assisted suicide are the solutions, final as they may be.
There is simply so much that we do not know from these brief anecdotes. They clearly speak to us of grief and loss; they speak also of hope that no one else should ever have to endure such experiences. Fair enough. But I cannot help but wonder at what we do not know; what we are not told simply because, as C.S. Lewis once observed: “To tell a lifetime takes a lifetime.”
Daniel Mulino MLC, in his dissenting report on the Victorian Parliamentary Committee’s recent inquiry into end-of-life choices (seemingly begrudgingly attached thereto), quotes an eminent specialist who sheds some possible light on some of the stories:
“Dr Natasha Michael, Director of Palliative Care at Cabrini Health, argued that many of the instances of poor end-of-life care that are used to justify euthanasia or assisted suicide reflect practitioners who:
“ ‘… practise outside of the scope of their training and experience and neither have the knowledge, experience or skill to assist those who suffer. The ongoing under-resourcing of psychosocial support to patients and family needs urgent attention in palliative care and in end-of-life care. The association between the expression of a desire for death and depression, anxiety and demoralisation is well documented in international research.
“‘However, there remains poor availability of key staff in clinical psychology, liaison psychiatry and social work services in our populations.’”
This provides, perhaps, some of the reasons why, at a time when the science of palliative care is so advanced in Australia, some people still experience great difficulties at the end-of-life. For others it may be the legitimate refusal of palliative care; for others, again, it may be a problem of access.
But for all of the emotion in these stories that do, genuinely, need to be heard, the question remains: what should the sentiments of compassion arising from these stories cause us to consider as a response?
For those who put this book together, there seems to be only one answer. However, in spite of the assertions in the introduction to the book that our politicians have been somehow derelict in their duty; that they lack courage (symbolised by the black heart on the book’s cover); that they will be the cause of suffering should they continue to “stand in the way”; there remains a clear and wholesome objective that is being ignored here – one that helps all Australians, not just the few. Namely, better access to the best of care for all.