Planning for a good death

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'End of Life' by Chris Johnston shows carer interacting with older person no longer able to make decisions about her life.

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 GierkMichele 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.

Topic tags: Michele Gierck, palliative care, death, aged care, health care

 

 

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Just to clarify (headline on email is "Advanced")... The correct terminology as per excellent article is "Advance" not "Advanced". I think this is very important to our understanding of an issue where the Catholic viewpoint is often misunderstood even by Catholics. Here in WA the L J Goody Bioethics Centre has done a wonderful job of educating us in this regard.
margaret | 26 May 2014


Nice article, Michele, making some good points. But there is a fundamental error, at least on the part of your Queensland doctor reported. It should always be unethical to deliberately do anything you know to be futile; it seems bizarre to have a ACP just to protect against inappropriate medicine. An 88 year old with dementia should never be resuscitated if they "die" of natural causes; the chances of success are anyway very very small. This should be a medical decision and not a part of a menu the patient or family are asked to tick off! The problem also arises when there is a stated wish FOR resuscitation when it would be obviously futile and inappropriate. Your mum`s case also raises the question about why she should be taken to hospital in the first place rather than be kept comfortable at home by her GP; and even more why on earth was she in a Coronary Care Unit which is all about monitoring for aggressive interventional management (in otherwise younger fitter peole)!? All a part of the madness of so much of Australian medical culture and (excessively expensive) healthcare.
Eugene | 26 May 2014


Dear M/s Gierck, I sympathise with the great sadness of your experience with your mother. I, too, find another great sadness in your story - the poor quality of the "doctoring" with which you had to deal. This is not a criticism of the individual doctors but of the system imposed by mickey mouse self-made ethics committees and administrations afraid of litigation. In my experience over 40 years as a specialist surgeon I can not recall a single instance of the necessity to impose such stress as you suffered on a family member as a let off clause for any decisions I made. Such was the case for all doctors of that era until ethicists and lawyers found an income to made from the practice of Medicine. People with no knowledge of Medicine deciding how it should be practised! Just imagine if we allowed people with no knowledge of engineering to build skyscrapers! The CBD would be a good place to avoid.
john frawley | 26 May 2014


I commend Ms Gierck for sharing her experiences in respecting her mother at the end of her life. To have such a difficult conversation early enough, and to document the Advance Care Plan with her GP, enabled all concerned to make decisions in accord with her Mother's wishes. This was most important in her last weeks more than at the time of her actual death. This is where the emphasis (and header) should be. - planning for respect at the end of life.
Dorothy | 26 May 2014


A very useful contribution.
Marie | 26 May 2014


Michele, I have been in that position with both parents. I knew what both parents wanted. That does make it easier but it doesn't lessen the pain, nor stop the flow of tears. Fortunately God knew my / our pain and quietly took my parents without having to give the final answer to their wishes. I feel for you but pray you too will be blessed in your pain.
Kerry | 26 May 2014


As a South Australian, I applaud your above conclusion, Michele, that a standard National format for ACP or AHD should be established ASAP. How can mere mortals like us bring this to fruition?
Bill Murphy | 26 May 2014


Frankly as a resident in a nursing home I have opted for resuscitation to avail myself of further opportunities for preparation for eternal life, and respecting Gods right to give and take life at His time and Will.[I do recognise that one doesn't have to sustain life by extraordinary means http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19800505_euthanasia_en.html More germane was my botched bowel cancer op in 2011 during which poor sewing during ileostomy, resulted in aggressive near fatal septicemia. The doctors unilaterally decided to let nature take its fatal course, with due time[All unbeknown to me even after op.A friend [prividenriallu, medically au fait], alerted me of events. I ordered him to tell doctors to take medically aggressive action against the 'poisoning', as i underlined God will decide when I die and I had much to do as a priest [and so this post on ES 3 years on for example ]
Father John George | 26 May 2014


John Frawley, you say that mickey mouse self-made ethics committees and administrations have created problems for patients and their loved ones. I am wondering how these mickey mouse committees came to have such power and how they came to be self-made? I have some sympathy for your frustration with the popularity of litigation as I have seen the effects it has had on schools and other institutions. Do you think it would be preferable if health practitioners were able to study and become accredited in the ethics of their professions? How do you think this might work? I suspect you would prefer no such procedures, just medical practitioners making decisions based on their own good judgement. I would really like to read more comments from you on this. Perhaps you could write an article about it for Eureka Street?
Janet | 01 June 2014


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