ADVANCE CARE DIRECTIVES BILL

Second Reading

Adjourned debate on second reading.

(Continued from 27 November 2012.)

The Hon. D.G.E. HOOD (16:01): The Advance Care Directives Bill is presented as a consolidation of various laws. At the outset, let me say that I personally and my party agree that the consolidation of laws in this area is appropriate, and that aspect of this bill we support; it would assist ordinary people in dealing with health directives, which is highly desirable. As I understand the government's position, it is intended that ordinary people, if I can use that term in a non-derogatory way (that is, non-legally trained people) should be able to draw up their own advance care directives without legal or medical advice. We support that aspect of the bill.

It is appropriate at this point to review some principles of the existing common law that operate in the absence of advance care directives. I have broken that into three categories, the first of which is that many people wish to provide that, in an end-of-life situation, they do not wish to be kept alive through artificial means; I see no problem with that. They are entitled to give such a directive, and the present law says that such a directive should be followed.

Secondly, a person is entitled to refuse medical treatment at any stage of adult life, and this includes measures that sustain life. As an example, a person is entitled to place on record that they will not undergo a blood transfusion. Such a directive must be followed, even if this results in the death of the person. There is no need for any change to that law on this point, in our view.

Where a person attempts to commit suicide, standard medical practice is to revive the person and to deal with all issues that exist for that patient, and this is as it should be. The present law in this regard deals appropriately with the above issues, in our estimation. I am not aware of any problems with the present law with respect to those three issues, or indeed the need for change.

There have been reports of situations where patients have been kept alive in a vegetative state by means of life support for lengthy periods. In some instances, this appears to have been inappropriate and not something we would support. My understanding is that those situations have arisen where the patient did not have an advance care directive. In some cases, the situation arose because some relatives insisted that life be prolonged artificially.

I do not believe that there is presently a problem of doctors prolonging life artificially, contrary to the terms of advance care directives, but there can be pressure on doctors, of course, through various avenues, including relatives, to prolong life in what some might say is an unnecessary way.

We need to look closely at the bill now before us to see whether it makes any changes to these aspects of the existing law and what the consequences of those changes are. There are, in fact, some very major changes to the existing laws contained in this bill, and it is those changes on which I will concentrate in this speech. The most obvious change is that there will be binding and non-binding directives.

I see that the bill, in clause 6, contains very sensible provisions to the effect that a person cannot compel a health practitioner to provide any particular treatment. There may well be medical or public finance reasons why care should not be given in these particular cases, so it is appropriate that a directive that certain treatment should be given can be only non-binding. Clause 19(1) provides:

Subject to this section, a provision of an advance care directive comprising a refusal of particular health care (whether express or implied) will, for the purposes of this Act, be taken to be a binding provision.

The concept of a binding directive is new in this bill. In order to understand what this means, it is necessary to understand the existing law on health directives as it affects the obligations of doctors and other healthcare practitioners as the law currently stands. I found a very useful summary set out in a policy directive prepared by the New South Wales department of health back in 2005. It states:

Consideration should also be given to the currency of the advance care directive, and whether it appears to be made in contemplation of the current circumstances (for example, was it made after the diagnosis of the current illness). Medical practitioners should also consider whether there is any reason to doubt the patient's competence at the time that the advance care directive was signed, or whether the patient was under undue pressure to make the directive. If the practitioner establishes that the refusal is invalid, or based on a false assumption or misinformation, he or she can treat the patient in accordance with his or her professional judgment of the patient's best interests.

It goes on:

Concerns may arise about the legality [or] applicability of an advance care directive, especially where the patient refuses treatment considered to be usual medical practice, and/or where the refusal may be life threatening. In an emergency, the medical practitioner can treat the patient in accordance with his or her professional judgment of the patient's best interests, until legal advice can be obtained—

if appropriate.

Where there are concerns about an Advance Care Directive in a non-emergency situation, the medical practitioner may wish to consult with the patient's relatives, or those close to the patient, seek legal advice, discuss the issue with colleagues, or other clinicians involved in the patients care.

It is clear from the above summary that the existing law is that health practitioners should ordinarily follow directives. We see no problem with that, but they do retain some discretion when faced with a directive that seems inappropriate in circumstances presented to them. Clause 19 of this bill has the effect of taking that discretion away. This is a very significant change, and I believe it will result in some unintended negative consequences.

Clause 36 of the bill states that a health practitioner, 'must comply with a binding provision of the advance care directive'. Again, we have no problem with that in almost all cases, but there will be exceptions and this law is written in a way that is absolute. There will be occasions when it is not beneficial for the patient. This removes all flexibility to consider whether the directive was really intended to apply in the circumstances or whether the directive was based on any incorrect information when it was formed. Both of these are genuine possibilities.

To put the issue another way, health practitioners at present have an ethical and legal obligation to act in the interests of the patient and also to act in accordance with the directives of the patient. Where those duties conflict, it is appropriate to investigate whether the directive as expressed was based on proper information and was really intended to apply in the situation that presents itself. The present bill will change the law such that the directive must be followed even when that appears to be inappropriate and even if the directive appears to be based on misinformation. This is one of the problems that can arise when common law is replaced by a statute with black and white terms. I put to you that that is the case in this situation.

One might well ask to what extent this matters. One could take the view that people should take proper care in drafting advance care directives and that they are wholly responsible for the implications of them, but the reality is such that we know that many directives have been badly drafted and will be badly drafted in the future, especially if they are done without legal or medical advice. Some will be based on misinformation or misunderstanding and possibly even on an incorrect diagnosis of a particular disease or condition that is later changed. This could result in tragic circumstances which by law could not be changed.

I ask you to consider a hypothetical example. A woman (let's call her Sally) may have a loved one (let's call him Tony) who suffers a stroke such that he is left in a comatose situation for a lengthy period. As a result, Sally may specify an advance care directive that if she suffers a stroke and is unconscious all medical treatment and life support should be withdrawn. It may be that she suffers a relatively minor stroke, for example, while driving a car, and due to being distracted a collision occurs with an impact that causes her to become unconscious.

The directive therefore states that all medical treatment and life support must be withdrawn. This may well, and probably will, result in her death or perhaps, at the very least, a permanent disability. Sally only intended the directive to apply if the stroke itself caused her to become unconscious, but taken literally the directive applies when the impact was the cause of her becoming unconscious. Sally had not intended the directive to be taken in that way and yet it would be quite legitimate, and indeed legal, under this clause of this bill for that directive to be taken literally. Sally would suffer the consequences of that. She would either die—as is quite commonly the case—if she was not treated or she would have a very severe disability, I suspect.

The result of this may be, and presumably will be, that lives will be lost when this is not intended when the advance directive is not taken as intended. Under the existing law, a doctor who was aware of the directive but formed the view that it is not intended to apply in the situation that he or she was presented with simply would not follow it, and that is fine under existing law. However, under this bill, the doctor would have absolutely no discretion whatsoever and would be compelled to follow the direction, even when it is to the patient's detriment.

The literal meaning of the words is clear: he or she would be prohibited (that is, the doctor) from giving any medical treatment whatsoever, even though treatment would result in the full recovery of Sally in the situation I have outlined. The patient could either die needlessly or be left with a permanent severe disability through the lack of medical treatment. Surely none of us want to legislate to require this consequence. We at Family First respect people's rights to prepare advance care directives and, when they do so and the directive actually applies in a situation that they had intended it to be prepared for, we see no problem with it. However, there are risks involved where it is poorly drafted or written in such a way that a circumstance presents itself that was not intended.

My view is that the current common law deals with this situation appropriately and there is no reason to change it. I am talking about that aspect of it, not the whole bill. If it is the government's intention that advance care directives may be drawn up without legal or medical advice—and I believe it is—then we can expect to see many instances where the directives are worded without proper consideration of all the possible circumstances in which they might apply, and, as I say, this could have fatal consequences.

Whilst I prefer to see clause 19, which deals with binding and non-binding directives, removed from the bill altogether, I have prepared an amendment that restricts binding directives to those that apply in end-of-life situations, which is after all what they are intended to apply to. This seems to me to be a reasonable proposition.

Another aspect of this bill also concerns me. Clause 12 sets out provisions that cannot be included in an advance care directive. The clause specifically refers to a provision in a directive that is unlawful, such as a provision that would be a request for euthanasia. It would come as no surprise to people in this chamber that I support that provision. However, this clause needs extending to cover other appropriate circumstances, in my view.

For example, if a person intends to commit suicide and, with that purpose in mind, prepares an advance care directive which says that in the event of unconsciousness for any reason no medical treatment whatsoever is to be applied, that is a binding directive under clause 19. The doctor has no option but to follow that directive. The person may possibly take an overdose of drugs and leave the written directive close by. If someone called an ambulance, the attending ambulance officers would be absolutely bound by the directive and could not take any action to revive the person, who would presumably die. Whilst I doubt that this is the intended consequence of the bill, it is clear that this would be the result that would follow. An amendment is required to correct this. I therefore propose that clause 12 be amended to specifically provide that a directive for the purpose of enabling or assisting suicide is invalid. I see this as an important amendment.

Another issue of concern to some doctors, which they have raised with me and no doubt other members of this chamber, is the question of ordinary feeding of elderly patients who are not mentally competent but are able to take in food and water orally, although they may need some assistance. We are not talking about intravenous feeding here, and that is important. We are talking about normal eating and drinking, if you like, through the mouth. Dementia patients are a good example. These patients are well aware of what is going on around them in most cases, but are often no longer legally competent to make decisions about their particular care. What happens if a dementia patient has made an advance care directive that, in specified circumstances, all nutrition and hydration (that is, food and water), which includes oral feeding and drinking through the mouth, is to be withdrawn? I emphasise that I am now considering the issue of oral feeding and hydration, not intravenous feeding.

There is a legitimate question as to whether the provision orally of food and water under medical direction in this manner is health care. If it is, then such a directive can be made under this bill; that is, that somebody could simply unknowingly refuse to be given food or water by mouth. I doubt that that would be many people's intention. I note that this issue has been considered in relation to substitute decision-makers. Clause 23(4) provides that, subject to an express direction to the contrary, a substitute decision-maker cannot decide to refuse the natural provision of food and liquids by mouth. This makes sense to me, and this seems to indicate that this is indeed health care, the term used earlier in the bill.

The concern of some doctors, as they have expressed to me and, no doubt, others in this chamber, is that they do not regard provision of food and liquids by mouth as medical treatment or health care at all. If health practitioners are required to refuse to provide food and water to a patient, they become an actor, or a contributor, in causing the death of the patient by direct starvation. In refusing food or water, they are not, in their view, withdrawing medical treatment. This is simply care, not medical care. They are acting as an ordinary person in refusing to provide food and water to a person who needs it.

I personally find the concept of an alert but medically incompetent person being starved to death, essentially against their will (because in many cases they would not have foreseen that circumstance), a horrifying one. It seems that, even if the patient desperately cries out for food or water, it cannot be provided to them if this is what the directive states for those circumstances. In the situation of a patient with dementia, there is no ability for the person to change their mind as to a directive and, essentially, they would starve to death, despite that being no-one's intention.

I assume that this was not an intended consequence of the bill but it is a real consequence, nonetheless. I therefore have proposed an amendment to clause 12(1) to clarify that a directive cannot require the withdrawal of food or liquids taken by mouth, and I stress to members that this applies only to food or liquid given by the mouth and in no way includes intravenous feeding, which is a totally separate matter, in my view. This would not affect the position as to intravenous feeding, which is clearly a form of medical care and, as I say, a separate matter. A person may still direct that intravenous feeding must be withdrawn in specified circumstances. We see no problem with that.

Similarly, I propose an amendment to clause 23(4) to provide that a substitute decision-maker cannot order the withdrawal from the patient of food or liquids taken by mouth in any circumstances. There is a lack of clarity in clause 12 as to the position where a binding directive would require a health practitioner to contravene a professional standard or code of conduct. Subclause (1) sets out certain directives that cannot be made, such as a directive that would cause a health practitioner to contravene a professional standard or code of conduct. Subclause (4) confirms this by providing:

A provision of an advance care directive that contravenes subsection (1) is, to the extent of the contravention, void and of no effect.

But subclause (2) has an inconsistent provision which states:

However, nothing in this section prevents an advance care directive from making a provision in respect of the withdrawal, withholding or refusal of health care to a person that would, if given effect, result in the death of that person.

This appears to mean that a health practitioner may be required to withdraw health care even though to do so would breach professional standards that apply either within the state or, more often, nationally. I cannot accept that a directive that health care be withdrawn, which would be a binding directive, must be carried out by a health practitioner if in the particular circumstances this would comprise a contravention of professional standards or a code of conduct established in the medical profession. Professional standards are in place for good reason, and I consider it inappropriate that they can be overridden by a directive from anyone.

The simplest remedy is to delete clause 12(2), and that is proposed in my amendments. It is clear from the bill generally that a directive may result in the death of the person. There is no need for this to be stated, as it was in clause 12(2). The subclause is similarly not necessary.

There is a similar issue arising from clause 36. Clause 36(2) provides (quoting the relevant parts only): 'a health practitioner may refuse to comply with a provision of an advance care directive...if such health care...is not consistent with any relevant professional standards.' So it is already in the bill. But then it goes on to say:

(3) Subsection (2)—

the one I have just read—

does not apply...

(b) if the specified health care comprises the withdrawal, or withholding, of health care to a person.

My view is that a health practitioner should be entitled to refuse to carry out a directive where, in the particular circumstances, carrying out that directive would almost amount to unprofessional conduct or would certainly be in breach of their own agreed standards of conduct. I therefore propose an amendment deleting clause 36(3).

I now return to substitute decision-makers and their powers set out in clause 23. A substitute decision-maker is given great powers by this bill; indeed, it is a power over life and death in some cases. This power can be exercised at any stage of the person's life, not just in end of life situations, provided that the person is not mentally competent to make their own decisions.

I wish to give one example for consideration. A man, let us call him Fred, is appointed as substitute decision-maker for his Aunt Bessie. He stands to gain a very large inheritance from her when she passes. This does not disqualify him from acting as her substitute decision-maker according to clause 21(2). Fred has a clear incentive to bring about her early death if he can do so legally. Under this bill, if Aunt Bessie is admitted to hospital for pneumonia and is, or becomes, mentally incompetent (Aunt Bessie may be just 45 years old) Fred can direct that all treatment must be withdrawn, which may result in death—and probably would in Aunt Bessie's case. It seems that such a direction would be binding on healthcare practitioners and fully legal, even though pneumonia might be very easily treatable.

I have considerable discomfort with this situation, which is a direct result of this bill and is again, I expect, unintended. I do accept that a substitute decision-maker should be able to make decisions resulting in the death of a patient in an end of life situation, but not where the ailment is not life threatening if properly treated. I am sure the intention was that this should be limited to life-threatening situations.

I proposed an amendment by inserting a new clause 33A to restrict the power of a substitute decision-maker to bring about death such that it only applies in end of life situations. Of course, the terms of a person's advance care directives will still apply. This amendment concerns only a substitute decision-maker giving a direction that will bring about the early death of a person and is strictly limited to those circumstances.

In summary, I urge all members to carefully consider this bill in great detail. Whilst the intention of consolidating various laws is a worthy objective and one that we would support, there are some very significant changes to the law that will have serious consequences, and I believe a number of the issues I have mentioned today were, in fact, unintended consequences. This bill has not been the subject of any detailed consideration in the lower house—in fact, it went through the lower house very quickly—with the exception, I believe it is worth mentioning, of the issues raised by the member for Hammond, Adrian Pederick. He raised a number of good questions that, in my opinion, have not been satisfactorily answered at this stage.

As I said, I have a number of concerns about this bill that I have outlined. I am proposing these amendments, and I look forward to contributions by other members.

The Hon. T.J. STEPHENS (16:22): I wish to start by indicating that I will be voting against the bill. Aspects of this bill which relate to a person's assets, financial and domestic particulars, and an individual's wishes for the future of those particulars I fully support; however, what this bill refers to as an advance care directive also encompasses future healthcare arrangements. Essentially this can cover provisions for euthanasia, as well. This is my concern.

I do not wish to endorse, through this bill, a pathway to the future ending of one's life, despite the fact that one point in time an individual has indicated that this is the case. As an initial point, people's views change, and an advance care directive made at one point in time may not govern how they feel later down the track.

It is similar to an obsolete will. It has been demonstrated by the courts that the contents of a will made under the law can be picked apart and overruled. This highlights the fickle nature of these supposedly legal documents. Similarly then, I do not wish individuals in this state to have the ability to govern something as serious as the ending of their life made on the basis of a flimsy piece of paper whose legal sturdiness is currently indeterminate.

That brings me to the next point. No bill that has come before either this or the other place during my time here has ever been free of any legal complications, and personally I do not believe there ever will be. I do not wish to open a Pandora's box when it comes to such serious matters, and therefore I have voted against most bills of this nature.

I believe in the dignity of human life, which includes those who are healthy and those who are ill, whether terminal or otherwise. At some point I am sure many in this place have faced the reality of loved ones being terminally ill, and as a result have grappled with the issue of euthanasia in their own mind. I know I certainly have. This is certainly a debate worth having but I am not willing to have it legislated by stealth in an innocuously named bill such as this. I urge my colleagues to strongly consider voting against the bill.

Debate adjourned on motion of Hon. J.S.L. Dawkins.

At 16:25 the council adjourned until Wednesday 6 February 2013 at 14:15.