License article

Time for truth: how to face the end of a life lived well

Even as a six-year-old, Kylie Polglase was comfortable talking about her own death from cystic fibrosis, a terminal lung condition.

''If I don't do all this treatment, I will get sick and die,'' she wrote in a picture book more than 20 years ago.

Now a frail 26-year-old, Ms Polglase, of Cherrybrook, is using her limited breath to convince others that talking about death - and creating an advance-care directive on how we want to die - should be a normal part of life.

This week she spoke at the launch of a plan by NSW Health Minister Jillian Skinner to make discussions about the quality of our deaths as common as those about the quality of our lives.

Making an advance-care plan should be like making a will, or deciding to become an organ donor, Ms Skinner said.

It is something we should talk about in healthy midlife or early in an illness with our families, friends, legal advisors, carers and medical practitioners, she said.


Ms Skinner's mother, a nurse, made her children promise there ''would be no heroic interventions''.

Yet the government's action plan finds many decisions about end-of-life care are made in a crisis, often resulting in unwanted and often unwarranted life-sustaining measures. It will include an education campaign to encourage doctors, lawyers and aged-care providers to discuss and suggest advanced-care directives, changes to ensure that advanced-care plans are incorporated in all health care records, and the introduction of a standard form to replace the many different ones being used.

Currently, those who do feel comfortable talking about their own deaths, including the chronically ill like Ms Polglase, are often treated as if they are crazy or suicidal.

''Everybody dies. It is not like I am different,'' Ms Polglase said. ''Yet it is very weird that every time I talk about it, I am treated as if I am being negative or depressive or people say 'Have you thought about talking to somebody about it?'''

Although she is an advocate for advance-care plans, she doesn't yet have one of her own.

''I've recently had discussions about the decision I want to make and that's been met with, 'Have you thought about seeing a psychiatrist?' It's just very odd.''

Doctors tell her that she doesn't need an advanced-care plan yet, and that she has plenty of options.

Ms Polglase is relatively well now. But the lungs she received in a double lung transplant are failing, she has had a stroke and lost the sight in one eye, and she suffers from conditions such as osteoporosis and arthritis, conditions that are most commonly associated with advanced age.

She's outlived most of her friends who received new lungs, and has seen many awful deaths. ''All the losses I have witnessed have influenced my thoughts. It seems very rare that we get what we want at the end.''

When Ms Polglase got her new lungs, she also got asthma. ''My worst fear is that I will end up in intensive care, or in an ambulance, or in an emergency department room, and they're going to resuscitate me or artificially keep me alive, and it will be against everything I want.''

She is now concentrating on improving the quality of her life, instead of the quantity. Before the transplant, Ms Polglase had never eaten yum cha, owned a dog or caught a bus to the city. Now she has.