Seventy percent of Australians wish to die at home, without pain and surrounded by family. Only 14 percent are able to do so.
In my early years in hospital pharmacy we made Brompton’s Cocktail in accordance with prevailing clinical guidelines, that is, “to order, for terminal patients”. The cocktail consisted of morphine crystals, cocaine powder, alcohol, syrup and chloroform water and it was given sparingly, on the fourth hour, to a patient in extremis.
In her welcome, engaging book, With the End in Mind, Dr Kathryn Mannix, revisits this practice, using it to highlight the days when medical morphine was spooned out cautiously, often in doses too feeble or too potent for the individual, the days, she writes “before we had worked out how to titrate painkillers”.
Informed by her staff that a new hospice admission was refusing morphine on the basis of bad memories of Brompton’s Cocktail, she visited the dissenter personally and discovered a retired psychiatrist who had once tutored her at medical school. In his experience, patients were rendered semi-conscious by the “industrial strength drug mixture”, unable to speak coherently or with dignity, attributes he could not accept for himself or put his family through. Mannix conquered the role reversal implications of ministering to her one-time mentor and employed her softly, softly conversational approach to bring him to a position where “he might allow that medicine had progressed” since the 1980s.
Mannix is a British palliative-care specialist who, in her own words has spent “half a lifetime … keeping company with the dying”. Her book is part memoir, part witnessing and a good part wise counsel in best practice for the dying. Her strong suit is conquering the moment with a quiet conversation, often begun in an atmosphere of heightened emotions, fixed beliefs and the competing interests of family gathered at the deathbed.
She is a natural storyteller with an eye for detail, dialogue and the telling moment. “I am offering the reader my eyes and ears, my seat at the table, my place in the conversations, and my perspective on events.”
As recently as 2016, Australian author, the late Cory Taylor, wrote in Dying: A Memoir: “For so many of us, death has become the unmentionable thing, a monstrous silence. But this is no help to the dying, who are probably lonelier now than they’ve ever been.”
Mannix wants the lost vocabulary as well as the etiquettes of dying brought back to the death bed. She teaches families what to expect, to give each phase of the body’s shutting down a name. She begins with “the gradual increase in daytime sleeping, the gradual reduction in time spent awake” and ends at Cheyne-Stokes pattern breathing, cycles of fast-to-slow breaths, often with long gaps between, until the “gentle ending of the cycle”. The approach of death, she hopes, will one day be conceived more generally as a process, like birthing, moving stage by stage to an outcome.
The other string to Mannix’s bow is her qualification as a Cognitive Behaviour Therapist, a discipline she used to develop coping strategies for people facing impending death (she wrote Britain’s innovative CBT First Aid Plan for palliative care).
This psychological intervention is reported to dramatic effect in the case study of 22-year-old Mark, who was in the end stage of cystic fibrosis with no transplant available. He was incapacitated by panic attacks, gripped by fear and very angry. Mannix took his fear, put it on paper in a diagram and allowed him to discover how adrenaline was driving the circuit, creating a self-defeating increase in his panic.
The liberating effect of studying the pattern allowed Mark a few months of relative freedom from fear (including a pub outing with mates) before he developed a fatal chest infection. Mannix was called to see him and was greeted by Mark at his most triumphant: “You should be f—ing proud of me … I’m f—ing dying and I’m not f—ing panicking!”
Dr Charlie Corke is an Australian intensive-care specialist and a strong proponent of timely advanced-care planning. His book, Letting Go, walks the same terrain as Mannix but his map is the ICU of a busy hospital where decisions are made on the run, as it were, not in the relative quiet of a hospice setting. His patients arrive in ambulances, desperately ill, close to death, often unable to communicate their wishes, and reliant on a frantic relative’s instructions.
“Doctors and families feel a tremendous responsibility to do something to save (or extend) life,” he writes. “This happens however unpleasant the medical journey is likely to be — and however poor the outcome.”
In crisp, clear prose Corke confronts the reader with the scenario most of us in Western society are likely to face after a period of declining health and function: ambulance, hospital, unconsciousness, no plan in place, family disagreements about treatment, escalation of medical intervention, and finally, our last days spent “connected to machines, cared for by strangers, and separated from family”.
“Medical terminology will dominate our last days and weeks,” he writes.
While not denigrating his own profession, he takes a humanistic approach to its limits. The reader learns of the “covenantal ethic” whereby a surgeon promises to use his or her skills “to battle death on behalf of the patient. In return, the patient puts their trust in the surgeon and accepts whatever is required”. The covenant can have unwanted outcomes, notably when a surgeon has not been given prior permission “to stop if things [go] badly”.
Keeping in mind that “saving is what doctors do”, Corke advocates forward planning well in advance of old age and infirmity, in writing, with the added backup of an appointed decision maker.
He presents brief case histories to show how things can go wrong. Rosalie’s story, for instance, gives pause for thought when appointing a decision maker. She chose May, her only daughter, as her agent. May gave up her job to care for her mother and swore to sensitively respect her mother’s wishes. When Rosalie was taken to hospital after developing a severe infection, May acted upon her mother’s stated wishes: comfort care with no burdensome attempts at cure.
However, May’s five brothers arrived at the hospital and exerted pressure on May to instruct the doctors to do everything possible to “save Mum”. Rosalie was put on life support, had six operations, developed multiple organ failure and finally died. May, writes, Corke, “seemed crushed and guilty”. The message is clear, he summarises, inform everyone concerned beforehand and obtain reassurance that all will respect the bargain.
Making choices is hard. Corke suggests that “prior (well-considered) wishes should carry more weight than a later decision made in a crisis”. And he covers all the bases, from religious to legal ramifications, to distorted portrayals of the success rates of CPR in TV and film, and emotive journalism around withdrawing life support.
The book ends with practical tips and accompanying case histories, tying up Corke’s thesis with the kind of wise, informed advice we crave in the era of Dr Google, advice that may be more useful than we think in light of the recent Productivity Commission Report into palliative care in Australia. Seventy per cent of Australians wish to die at home, without pain and surrounded by family. The “without pain” part is the work of the severely underfunded palliative care sector. Fourteen per cent achieve that goal.
As a manual for how to avoid ending up in ICU, in what one of Corke’s patients called “the bad bit at the end”, Letting Go is a guide book for our age.
Gail Bell’s essay My Mother’s Good Death can be found at SBS online: sbs.com.au/topics/life/family/feature/my-mothers-good-death
Story originally published as: With the End in Mind & Letting Go review: Ways to have a good death