AustLII Home | Databases | WorldLII | Search | Feedback

Precedent (Australian Lawyers Alliance)

You are here:  AustLII >> Databases >> Precedent (Australian Lawyers Alliance) >> 2018 >> [2018] PrecedentAULA 62

Database Search | Name Search | Recent Articles | Noteup | LawCite | Author Info | Download | Help

Harris, Renee --- "Book review: Letting go: How to plan for a good death, by Dr Charlie Corke" [2018] PrecedentAULA 62; (2018) 148 Precedent 46


LETTING GO: HOW TO PLAN FOR A GOOD DEATH

BY DR CHARLIE CORKE

By Renee Harris

Publisher: Scribe Publications 2018

ISBN: 9781925322705: 228pp

For all the inevitability of death we are not very good at talking about it, never mind planning for it. As a quote at the beginning of this heartfelt book says: ‘Ours is a death-denying society and medicine is a death-denying profession’ (David Kuhl).

Despite the fact that 70 per cent of us want to die at home, with minimum pain and suffering, surrounded by family, only 14 per cent manage it. Writing with compassion and insight drawn from many years of experience as an intensive care specialist, in Letting Go: How to plan for a good death Dr Charlie Corke unpacks the reasons why our aspirations for a ‘good death’ are so often thwarted, and what we can do about it. He deals with a discomforting subject in an honest, straightforward and practical way, illustrating the importance of ‘setting limits’ with many deeply affecting anecdotes about patients’ deaths, both ‘good’ and ‘bad’.

Painfully thin and 79, Judy was rushed to hospital with end-stage lung disease and pneumonia. Judy and her husband had never discussed what she wanted in such a situation, and now she couldn’t communicate. He felt Judy should be ‘given a chance’, so although nothing the doctors could do was likely to stop her from dying, when Judy stopped breathing they had no option but to resuscitate. A tube was inserted into her throat and she was put on a mechanical ventilator. Another tube ran through her nose into her stomach so that she could be fed. Over the next few weeks, numerous catheters were inserted into the veins in Judy’s neck to administer drugs, and tubes repeatedly pushed through the skin and wasted muscle of her chest wall to drain the fluid around her lungs. Repeated courses of antibiotics gave her persistent diarrhoea, making her buttocks sore and inflamed. Finally the pneumonia retreated, and attempts were made to wean her off the ventilator. Each time, Judy stopped breathing. The tracheostomy meant she couldn’t talk, and without sedation she was in obvious distress. Then she got another chest infection and her kidneys failed. This time her family accepted that her end was near; she was taken off the ventilator and, deeply sedated and holding her husband’s hand, Judy died. Dr Corke, as one of her treating doctors, felt they ‘had let her down’.

One of the biggest contributors to ‘bad deaths’ is, ironically, medical progress. Only a few decades ago intensive care was reserved for young patients with reversible illness, not frail, elderly people nearing the end of their lives. Medicine’s ability to prolong life almost indefinitely has made death alarmingly ‘optional’, so that today the ‘fear of death’ has been replaced by a ‘fear of dying’.

Families can also be problematic, because when making end-of-life decisions for relatives the tendency is invariably to do something, because doing nothing is too difficult. Accepting and allowing death to happen can feel like a contradiction of love, particularly when accompanied by stress, uncertainty, sorrow, duty and guilt. Relatives commonly push for more treatment for non-communicative or confused patients, even when they know they are overriding their express wishes. And sometimes frail, elderly competent patients who have consistently expressed a preference to avoid painful, low-benefit medical procedures are bullied by their families into agreeing to further treatment.

Rosalie chose May, her only daughter, as her agent, and told her she wanted comfort and pain relief rather than invasive attempts to extend her life inappropriately. When Rosalie was admitted to hospital with a severe infection, May insisted that the doctors respect her mother’s instructions, but her five brothers exerted pressure on May to do everything possible to ‘save Mum’. In the end, Rosalie was put on life support, had six operations and suffered multiple organ failure before finally dying. May, observes Corke, ‘seemed crushed and guilty’ at having failed her mother.

As Dr Corke points out, the hope that we can both cure and comfort at the same time is often delusional, but difficult to avoid, given our natural inclination to want to ‘hedge our bets’ if there’s even the slightest hope of recovery.

Without clear instructions most doctors will strive to save a life because ‘preventing death is the scientific measure of medical success’ (p41) and doing anything else can be confronting and disconcerting for clinicians (p98). ‘Treatment escalation’ is the default position and can be very hard to resist; especially when medical inaction can invoke criticism from colleagues, the profession, aggrieved relatives and the law. Stopping the medical technological juggernaut to consider what a person wants (and what is actually in their best interests) can even be perceived as ‘tantamount to negligence’ (p58).

Emotive journalism about withdrawing life support and distorted portrayals of the success rate of CPR in movies can exacerbate our sensitivities in this regard: media reports constantly refer to miracle cures, recoveries against the odds and applaud those who bravely ‘do battle’ with their illnesses. Patients who decline further treatment or surgery are rarely hailed as heroes given the predominance of what Dr Corke calls this ‘fighting narrative’.

Deciding that death is in a person’s interests may seem counterintuitive. But where quality of life is poor, and treatment is incompatible with effective pain relief and unlikely to be of benefit, choosing palliation and allowing death to happen is often preferable (p82).

Dr Corke explains the various options and stresses the importance of forward planning (made well in advance of old age and infirmity), communication and resolve. Advance care directives (ACDs) should be written down, clarify wishes that are discussed and shared with family, friends and doctors, and are preferably backed up by an appointed medical enduring power of attorney (decision-maker) who can be trusted to pursue your wishes with conviction and firmness. Delegating end-of-life decisions to doctors instead of family members is common but relies on a model of medicine – based on a lifelong, intimate doctor/patient relationship – that is largely no more. In modern medicine, teams of treating doctors typically care for a single patient and the family doctor is unlikely to be consulted (p80).

Language is also extremely important: requesting no CPR unless there is a chance of a ‘reasonable recovery’ allows for doubt in the mind of concerned relatives and treating physicians (p57). Similarly, the desire to survive so long as you can ‘communicate’ means different things to different people. So drafting ACDs is not as simple or straightforward as you might think. Being explicit is vital – you must leave your loved ones in no doubt about what you want.

Dr Corke’s primary message is that ‘good deaths’ typically require advance planning and clear communication of end-of-life treatment wishes to our families, friends and doctors. Just as we make a will to avoid confusion and conflict for those we leave behind, so we need to think about our end before we get there. Clear instructions specifying whether or not we want to be kept alive on life support, under what circumstances and for how long are essential, especially if a crisis situation should arise where we would want to resist futile treatment in favour of compassionate care.

Renee Harris is Publications Manager for the ALA. PHONE (02) 9258 7700 EMAIL renee@lawyersalliance.com.au.


AustLII: Copyright Policy | Disclaimers | Privacy Policy | Feedback
URL: http://www.austlii.edu.au/au/journals/PrecedentAULA/2018/62.html