Legal bind mean no decent end to suffering for incurably ill

SARA MONOPOLI, a non-smoker, was 34 years old – and 39 weeks pregnant – when diagnosed with terminal lung cancer. Alan Rosendorff, 56, was a successful lawyer and strapping bloke who swam kilometres in Melbourne’s Port Phillip Bay to keep fit, when he learnt his recently diagnosed stomach cancer had metastasised.

In some ways, Sara and Alan’s stories are similar. Both chose aggressive treatments, hoping to beat their cancers and live long lives. But eventually both were told – and came to understand – that they would not be cured and death would come sooner rather than later. They also realised, and this took some time to sink in because of how badly they and their families wanted them to live, they really had just two choices.

One was to die without having the time or feeling well enough – because they were in the throes of an acute and probably futile medical intervention – to do the things they always wanted to do, to set things in order and to say their goodbyes.

The other was to get the palliative care they needed so they were comfortable enough to enjoy the final months or possibly years of their lives (studies show palliative-care patients live longer than their cure-seeking counterparts). Taking this option would help them to die at home in their loved ones' arms.

Sadly, acceptance of this reality by Sara and her grief-stricken family came too late to save her from what her treating doctor and New Yorker essayist Atul Gawande now admits was a foreseeable trajectory of futile and onerous ‘'treatments’‘, ending in a pain-filled death in hospital for which no one involved, least of all Sara, was prepared.

Alan did better but had one complaint. Lucky to have support and advice from an Australian doctor willing to engage in the long and, at times, difficult conversations with terminal patients that bring them to an acceptance of their mortality, Alan came to realise his final days might contain suffering and indignities that modern pain relief might not address. Alan also learnt his eventual fate was to starve to death and that – in his words – was not a way for him to go.

What Alan wanted was for his doctor, Rodney Syme, to give him control over his end. This control would provide him, and his anxious family, comfort and security in the time before Alan’s decision that his time to die had arrived.

But while suicide isn’t unlawful in Australia, aiding and abetting one is, which means that as much as Syme wanted to help Alan, assisting in this way would put Syme at real risk of police harassment and even jail. What’s a good doctor to do?

It’s certainly interesting to observe what doctors on the receiving end of a terminal prognosis do for themselves. According to Professor Ken Murray, most of them reject heroic measures and futile treatment. Some even wear medallions stamped ‘'NO CODE’‘ that inform their colleagues they don’t want CPR or defibrillation. A few even tattoo such refusals of consent on their chests.

It seems this is not because doctors want to die more than anyone else. They are better informed than most patients about what’s likely to happen to them and the unavoidable limits of modern medicine.

Alan Rosendorff’s story will air nationally on ABC local radio in the first half of 2012. Stay tuned for details

Publication history

Legal bind means there is no decent end to suffering   Moral Maze: Sunday Sun-Herald