Issue 47 / 3 December 2012

LACK of consistency and legal uncertainty is problematic in many areas of life but the emotionally charged area of death and dying brings these difficult issues sharply into focus.

While doctors and their patients have indicated that they value the role of advance care planning, legislators are yet to take steps to create nationally consistent legislation. Until they do, these inconsistencies will continue to place doctors and patients trying to implement a plan in complex legal territory.

In October 2012, the Senate’s Community Affairs References Committee released its report on Palliative Care in Australia. The committee recommended the development of national model legislation for advance care planning.

Currently, the legal uncertainty of advance care planning can mean hospitals and aged care facilities need to refer cases to the courts to make a decision.

In South Australia, for example, uncertainty over the legality of withdrawing life-sustaining treatment led an aged care facility to approach the Supreme Court for a declaration about whether it could lawfully comply with a patient’s anticipatory direction not to provide hydration and nutrition. The court agreed.

In another case, in NSW, the Supreme Court was asked to make a declaration about the validity of an advance care directive prepared by a patient a year earlier, which indicated that he would refuse dialysis. The court accepted the right of the patient to make the decision and the hospital to comply with it.

The validity of advance care directives both within states and between them is a problem that could be addressed by national harmonisation. Ensuring an advance care directive created in one state is valid in another state should be a matter of some urgency given Australia’s ageing population and its increasingly mobile workforce.

The current situation leaves many health care providers uncertain about whether they can act in accordance with a patient’s advance care directive, particularly one prepared interstate. The Senate committee heard from palliative care specialists who, in an effort to address this issue, said they advised patients to redraft documents when they moved to other states.

Further problems arise when advance care directives clash with the wishes of family members. Conflict between patient autonomy, family needs and values, and the medical practitioner’s views as to the appropriateness of treatment, together with the legal uncertainty of the recommended approach, is often an impetus for legal action.

The potential consequences are significant for doctors who treat a patient contrary to their expressed wishes or who comply with an advance care directive that may be invalid. Health care providers need to feel confident that if they act in good faith on an advance care directive they believe to be valid, they will not face criminal, civil or disciplinary action.

The Senate Committee also found that the jurisdictional differences and complexities with advance care directives and advance care planning were hampering greater take-up. These differences have the potential to shift attention away from the patient and onto the process at a time when the focus should be on good quality decision making and appropriate clinical care.

The ability to locate a patient’s advance care directive electronically via the PCEHR (personally controlled electronic health record) may allow greater access to a patient’s previously expressed wishes, but lack of clarity about the validity of advance care directives from other jurisdictions may still hamper rather than help clinical decision making.

Fortunately, moves to harmonise formats and terminology in advance care directives are underway. Harmonisation and recognition of advance care directives across jurisdictions was one of the aims of the National Framework for Advance Care Directives, published by the Australian Health Minister’s conference in September 2011.

Avant agrees with the recommendation that all governments should pursue harmonisation of legislation relating to advance care directives as a priority. A nationally consistent approach to the regulation of health care generally is urgently needed to reduce uncertainty.

The quality of decision making in health care should not depend on which side of the border you live in.

Ms Georgie Haysom is Head of Advocacy at Avant.

Posted 3 December 2012

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4 thoughts on “Georgie Haysom: Border protection?

  1. Charlotte Goodall says:

    Some very wise thoughts Ian. None of us can honestly say what we would want until we are put in that situation, it is easy to say you would want to die from the persepctive of a fit and able state, it is very different when you are put in the situation of die or live with a disability, the majority choose life, because in the end we only have 1 life and even if you cannot do much for yourself you can still enjoy some of life’s treasures. I have seen very severely disabled patients cling onto life with every last ounce of strength, except when they have pain, that often changes the situation, but even then the majority choose to continue living.
    Advanced directives are not designed for new illness, they are meant for when there is no further hope of returning the person to a state where they can again make their own decisions and so would never come into play in the MVA situation or the acute MI. They are for down the line if the person is in a persistent vegetative state or terminal phase of their illness, then they provide very valuable information and can prevent ongoing suffering and futile treatment.

  2. Ian Hargreaves says:

    Try this quick test.
    Ask all your middle class non-medical friends: ” If you were in a serious car accident, would you rather be killed outright or left quadriplegic on a ventilator?”

    100% pick death.

    Now try strolling through the ward of a spinal unit, euthanasing everyone in accordance with such strong pre-accident views.

    Why did an action-man like Christopher Reeve express a burning desire to stay alive? Because advance directives aren’t worth the paper they’re printed on.
    And if you’ve ever had your email/creditcard/computer hacked, PCEHR ones sure as hell aren’t worth the electrons they’re printed on.

    From a consumer’s viewpoint, if you can’t change your mind, an ACD is dangerously prejudicial, in the literal sense of the word.

    From a lawyer’s viewpoint, if you CAN change your mind, there’s no point having an ACD.

    We get back to basic informed consent/ informed refusal, which remains fluid, and ultimately reflects the current desire of the patient, not his premorbid impressions of paralysis/ cancer pain/ mental incapacity etc.

    Would I want to be as disabled as Stephen Hawking? Hell, no.
    But if I found myself as disabled as Hawking, well, I know what an intelligent man would do…

  3. Anthony Collins says:

    We have a national donor register – how hard would it be to have an Advance Car Directive register

  4. George Burkitt says:

    Not only is a national legal framework required but also a national internet accessible register of advance directives with the requirement that in the event of any person over a certain age being admitted to hospital, the register must be checked before any treatment is instituted. The problem is that life saving treatments are generally the default intervention when someone is admitted in an emergency situation and once instituted it is very difficult to stop the process if this is not what the advance directive indicates.

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