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.
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