Life and death decisions

The ACT Legislative Assembly is currently considering the Guardianship and Management of Property Amendment Bill 2008 (the Bill), which, if enacted, will amend the Guardianship and Management of Property Act 1991 (ACT).

This amendment, if enacted, will enable health professionals (i.e. doctors and dentists) to accept the informed consent of another person (a Health Attorney) on the behalf of a patient. The health professional will be able to rely upon this proposed law where the patient is in the health professional’s care and, in the health professional’s opinion, is incapable of giving informed consent to medical treatment, and does not already have an enduring power of attorney or legally appointed guardian.

The proposed law will identify a class of people as “Health Attorneys” and sets out a process for the health professional to follow to prioritise the ready available Health Attorneys. Effectively, the proposed laws will guide the health professional in his/her deliberations on whom to appoint to make medical decisions or to give informed consent on behalf of the patient (the “protected person”).

The proposed amendment will not change the law in relation to when informed consent is required (i.e. not in emergencies) or the legal effect of consent being given by the patient’s enduring power of attorney or legally appointed guardian, or by the Public Advocate or a tribunal or court. Rather, it will establish an additional legal authority that may give consent: the Health Attorney.

Currently, family members and close friends can, quite understandably, become very distressed at being denied the opportunity to make medical treatment decisions on their son, daughter, parent or friend’s behalf without first having been duly appointed as an attorney pursuant to an enduring power of attorney or a guardian. It may, indeed, seem counterintuitive to not rely upon the judgments of those who best know the protected person to make decisions in line with what the person’s views and values.

Whether it was intended or not, a side effect of the proposed amendment will be to relieve the demands upon the Public Advocate to take responsibility for the giving of informed consent except where the health professional feels that there is no suitable Health Attorney available; there is disagreement among potential Health Attorneys; or the medical treatment is likely to extend beyond six months.

There are, I would suggest, a number of significant concerns with the Bill. These concerns fall loosely into three main categories: theoretical, practical and unintended consequences.

In the theoretical category, the recognition of the Health Attorney as an alternative decision maker circumnavigates the procedural safeguards inherent to the roles of the Public Advocate, the guardianship tribunal and the court.

Unlike the independence and the objectivity of the Public Advocate, a Health Attorney is likely to be very emotionally involved and this could work against the best interests of the protected person. Unlike the appointment of the patient’s enduring power of attorney or legally appointed guardian, the appointment of a Health Attorney is not made independently from the decision whether to or how to treat the protected person. This will result in a perceived conflict of interest as the health professional who is ethical and, perhaps, contractually bound to treat the protected person, is also responsible for deciding who to appoint as the Health Attorney.

Further, unlike the appointment the patient’s enduring power of attorney or legally appointed guardian, which can occur at a time prior to the need to make a decision about treatment, the Health Attorney, by contrast, is appointed independent of the protected person’s wishes.

The practical problems with the proposed Health Attorney concept include adding yet another responsibility on to the shoulders of already very busy health professionals. For instance, in considering who is best able to represent the views of the protected person, the health professional will be required (i.e. “must”) consider the potential Health Attorneys for the protected person in the priority order: first, the protected person’s domestic partner; second, a non-paid carer for the protected person; and third, a close relative or close friend of the protected person.

A second practical problem, but for the protected person, is that the health professional, in considering who to appoint as the Health Attorney, need not chase down a person who is not reasonably readily available. This could be a real concern where the protected person and his/her local family are not on speaking terms. It may also be a concern where the protected person’s marriage or domestic relationship is starting to breakdown.

A third problem, and again for the protected person, is that the health professional has discretion as to who he or she appoints as a Health Attorney. This is a concern because health professionals have moral and religious codes, which may not necessarily coincide with those of the protected person.

Indeed, included in the Bill is an example of a person who the legislative drafters consider to be an unsuitable Health Attorney. This is because hearsay has it that the potential Health Attorney (the protected person’s mother) is being subjected to the undue influence of a third person who is unrelated to the protected person and who is misguided on the dangers of infections caused by the used of blood products. The case study is cited to illustrate a situation in which the health professional may choose not to appoint a particular person as a Health Attorney. However, the case study also illustrates how some decisions regarding who to appoint as a Health Attorney can be highly complex and beyond the health professional’s training, expertise and resources to resolve in stressful situations.

A fourth concern for the protected person is that health professionals are protected from liability from their decision to appoint a Health Attorney and the Health Attorney is also protected from liability for giving informed consent on behalf of the protected person. While this protection only covers decisions made in good faith, we will need to wait to see how the courts interpret good faith in this context.

“Unintended consequences” is the third category of concern. This Bill is principally targeted to patients who may be unconscious for a relative short time, perhaps following a serious accident. If enacted, however, the Bill will capture people with a range of cognitive disabilities. I suggest that there are practical and theoretical concerns with the proposed amendment for people with disabilities.

It is understandable that a parent of an adult with an intellectual disability may be distressed at being told that he/she is unauthorised to make medical decisions on behalf of his/her son/daughter. While most parents are probably well-intentioned and would do the best for his/her adult son/daughter, it is generally good practice for the guardianship arrangements to be formalised. This protects the parent from allegations of inappropriate decision-making and ensures that a range of decisions can be made in a timely manner.

These decisions may be broader then medical decisions, e.g. financial and lifestyle. I suggest, however, that the proposed Health Attorney law will subtract from the seriousness of the decision to appoint a guardian because medical decisions will be able to be taken on an on-going basis by an ad hoc process of using Health Attorneys.

Further, without the continuity of having medical decisions made by one guardian, the protected person’s health care needs might not be addressed in a systematic and holistic manner.

I suggest too that a duly appointed guardian should work to understand the protected person’s likes and dislikes, views and opinions and empower the protected person through involving them as much as possible in the decision making process. This is less likely to happen if decisions are made ad hoc under the Health Attorney law.

From the perspective of a person with a disability, the Bill also poses a more worrying move for people with disability. There has been a long history of disability being understood as a medical problem. To illustrate this misunderstanding, few people would consider the need to wear eye-glasses as a medical problem even though such need could be explained in medical terms. Fewer people would say that optometrists should make a hold range of lifestyle decisions on behalf of people who wear glasses simply for that fact. Yet, such decisions for people with disabilities have largely centred around their disabilities and have been made by either the medical profession or the extension of the health care system. The Bill, if enacted, will invest yet again power into the medical profession. This will reinforce the stereotyping that disability is a health issue at a time when we should be emphasising that people with disabilities need to have their human rights protected by appropriate safeguards and proceedings.

The Bill’s Explanatory Statement states that the proposed amendments will be consistent with sections 10(2) and 28 of the Human Rights Act 2004 (ACT) and the United Nations’ Convention on the Rights of Persons with a Disability. This analysis of the Bill leads to a conclusion of that this consistency is superficial.

Supporters of the proposed law may suggest it will merely codify the current customary practices and will parallel the Victorian legislation that has been in operation to a number of years.

While I have the greatest respect for health professionals and the medical profession, I am unconvinced that the current practices necessarily always benefit the patient and ensures that medical decisions are made in accordance with what is likely to be his/her wishes.

I suggest that the proposed Health Attorney law has the potential to leave already vulnerable people even more vulnerable by establishing an alternative decision making process which circumnavigates the procedural safeguards of the pre-existing Public Advocate and Guardianship systems.