My 88-year-old mother has been taken by ambulance to the Accident and Emergency ward at the local public hospital. I arrive twenty minutes later. That's enough time for the young doctor who has scrupulously read my mother's extensive medical history, to call me aside. (He's realised I'm Mum's Medical Power of Attorney or Medical Substitute Decision Maker.)
The doctor is concerned that the newly-arrived patient with plummeting oxygen levels, who was diagnosed six months ago with early stage Alzheimer's, has deteriorated quickly. 'If your mother continues to deteriorate, would she want to be resuscitated?'
'No resuscitation,' I respond almost automatically, and then explain. 'Years ago, not long after Mum made me her Medical Power of Attorney, we went to see her trusted general practitioner to discuss what her future health-care wishes would be if she were unable to communicate due to illness or injury. Mum said she didn't want to be resuscitated, particularly if her quality of life would be severely compromised, or if she'd end up in a vegetative state.'
In retrospect, it was only at the insistence of friends in the medical fraternity in Queensland, where 'Advance Health Directives' have been common for some years, that my mother and I visited her general practitioner in Melbourne to discuss her future preferences for medical treatment. (At the time Mum was well, in her early 80s, and still working as a school crossing supervisor.)
In answering the Emergency doctor's question about resuscitation, I'm so thankful that my mother's wishes have been made clear and documented by her general practitioner. Not only does it mean that the medical team at the hospital have clear instructions, but it's also a personal reassurance for me; I am in no doubt that I am acting as my mother would want.
The Emergency doctor seems pleased with my response — not to resuscitate. I'm not sure if that's because he has clear instructions, or because it's a view he personally shares. (What he doesn't see are the tears welling as I walk back towards my mother who is wondering about all the beeps and blips on the machine she is hooked up to.)
Five weeks later, my mother still has not left hospital. After weeks in coronary care, followed by a stint in a general ward, and a fall, she is moved to rehabilitation.
One day while visiting Mum in rehabilitation, I find pamphlets on her bedside table — for brain-tissue donation. 'What's this?' I ask, perplexed. My mother tells me that a doctor she'd never met before brought them in and talked to her about it. 'I couldn't understand what he was talking about, so I told him to speak to you,' she says.
Soon after, I speak to the doctor in question. As the Medical Power of Attorney I need to understand what's going on.
Well, it's now starting to get complicated. Tissue donation (which includes organ donation) was not an issue my mother and I ever talked about. Had the topic been included when we discussed Mum's future preferences for medical treatment with her GP, Mum may have given a definitive answer. But that didn't happen. And now it's too difficult to have the conversation with my mother as ill health has taken a toll on her cognitive abilities.
For Mum and I, the more pressing issue is finding out if her health will improve, what capacities she can reclaim, and whether she will be able to return home. (I suspect not.) As such, I'm desperately trying to find her a place in respite until her living arrangements are worked out.
Adding a further issue, like tissue donation, is just too much at the moment, particularly when I discover that the brain-tissue donation process would require additional tests — and once she dies, a post-mortem. (The latter is an issue in our family, since my father's body was 'misplaced' after his post-mortem.)
After much consideration, I decide that my mother will not participate in brain-tissue donation — at least for now.
When my mother's medical wishes were clear, as in the case of resuscitation, the instruction I gave doctors was straight forward. The same, however, could not be said about the brain-tissue donation decision.
These days Advance Care Plans (ACP in Victoria) or Advance Health Directives (AHD in New South Wales and Queensland) are becoming more common. Not only are they extensive and convey detailed instructions for health care workers, but they are also an important guide for family who may be called upon to make major medical decisions.
But perhaps more importantly, at a time when a person is most vulnerable, ACPs or AHDs are a vital step towards ensuring a person's care preferences are respected come the end of their life. As one Queensland doctor explained, 'People should be offered the opportunity to make an Advance Health Directive because often they don't want intervention at the end of their life. But the medical and nursing staff are obliged to start resuscitation, even when it's futile, unless there's some form of Advance Health Directive or non-resuscitation plan documented in the patient's chart.'
Although AHDs or ACPs are used in states and territories all over Australia, there are a number of variables, including different document names and formats. (And this may have legal implications for one jurisdiction recognising an ACP or AHD made in another state or territory.)
Creating a standard national format for Advance Care Plans or Advance Health Directives, would be most helpful for the community, particularly when supported by broad community education initiatives.
Michele Gierck is a freelance author whose most recent book is Peter Kennedy: The Man Who Threatened Rome.
We recommend In Search of a Good Death, an educational resource currently being broadcast on PBA-FM community radio in Adelaide and available online. Program 2 — Legal Matters — deals with end of life directives.