ADVANCE CARE DIRECTIVES BILL

Second Reading

Adjourned debate on second reading.

(Continued from 17 October 2012.)

Ms CHAPMAN (Bragg) (12:33): I rise to speak on the Advance Care Directives Bill 2012. I indicate that the Liberal Party has not formed a party position on this matter. Of course we do, on a number of bills, form a party position. In this matter, it was considered appropriate for that not to be the case. For us on this side of the house, every bill is a conscience vote but we do of course determine a party position, and this is one of them.

The DEPUTY SPEAKER: I was just waiting for you to say that and you did not disappoint me.

Ms CHAPMAN: I indicate, however, that I will be supporting the bill. There have been a number of concerns conveyed about the application of the bill, about which I will advise the house. I think a number of our other members, probably on both sides of the house, have received correspondence from several parties on these matters. I will come to them shortly. They may well be matters that the minister can give some response to today. If not, I think a number of members of the parliament will be looking for some comfort on a number of these matters.

The Advanced Care Directives Bill 2012 was tabled by the minister in this house on 17 October 2012. It certainly has a long gestation period. Members will be aware that this parliament was a pioneer in the area of medical treatment and palliative care with the passing of the Consent to Medical Treatment (Palliative Care) Act 1995. The development of that bill and its final passage can be accorded to the hard work of the Hon. Jennifer Cashmore, who was a great champion of it, and, I am sure, other members who were in the parliament at that time, including, I remember, the Hon. Dean Brown, who was very passionate about developing what was a pioneering area of palliative care in Australia.

This legislation, however, comes as a result of a review initiated and undertaken by this government. In April 2007 the Advance Directives Review Committee was established, and it was chaired by the Hon. Martyn Evans, a former minister for health in this place under the Bannon government. That committee completed two very substantial reports, providing for some 36 recommendations, in September 2008.

The circumstances surrounding the establishment of the inquiry were on the basis that the government acknowledged that a number of legal tracks were developed by which a person could appoint an agent or another party to undertake important decisions on their behalf, whether they be financial across to lifestyle and medical decisions, and that resulted in the general need for a review. Certainly at the time it was the government's view that completing advance directive forms could be a confusing and complicated process and that two or three different forms needed to be constructed or developed to deal with health, lifestyle and financial matters. They saw the significance of being able to have a standard model form simplified, in easy language that was understandable, removing all the legal speak, and to make it a cheaper, more accessible, more effective, more usable, user-friendly format for this whole process of giving individual citizens the power to appoint someone else to make decisions for them.

All that sounded good. The comprehensive review reports (the two that I have indicated) published in September 2008 then seem to fall in a hole. The principal recommendations of that inquiry I commend to members of the house who have not read them. I think they are quite instructive in the development, history and applicability of the regimes we have to date and they are also a very comprehensive assessment by the committee as to areas of reform. However, the principal recommendation was that the four forms that were needed to cover these types of directives were to be brought together under a single act and that an advanced directives act be introduced with supporting forms and guidelines in simple, non-legislative language.

The report also emphasised the fact that there was a lack of awareness in the community of the present regime and that the advance directives are little used because they are not properly understood. I think that is a fair assessment, certainly from my experience and, I am sure, other members' experience. Whether it is something that is utilised in their own family and extended social network or whether it is, in my case, in the legal aspects, it was common in my 20 years of practice to prepare wills and powers of attorney sometimes for short periods if someone was going overseas, and in those days it was pre-mobile phones, etc. The significance of having an authorised attorney in Australia while a party was overseas was frequently used and, of course, enduring powers of attorney were designed to be able to continue to operate even if the donor in that sense (the party signing the power of attorney) were to develop a level of mental incompetence.

They were common, and I think that there was a general understanding that—as has developed over a long period of time—people no longer die immediately. Occasionally, sadly, they do in assaults or accidents and interventions such as that, but very often people die as they age over a period of time, and it is reasonable to expect in this day and age that there is a period near the end of life when there would be a diminishing capacity in all sorts of areas—frailty, mental competence etc.—that are sometimes, sadly, severely intruded into by conditions such as Alzheimer's and the like.

As a legal practitioner—and other practitioners are colleagues of mine—there was an expectation that, instead of just preparing someone's will or making provision for widows and the like, there would also be an understanding of the importance of having mostly an enduring power of attorney so that one or other persons could be appointed (often family members, but sometimes lawyers, accountants and other professional advisers) to undertake that role.

As the science developed, the medical technology developed, and there came a new era for not just the ageing process and the end-of-life time but the opportunity for surgical and other medical interventions which could prolong life and which have developed a whole new panacea of opportunity as we age. Those interventions are not entirely at the end of life; they can be during our lives that will extend the life span.

I will not be dwelling today on the early part of life but, sadly, there are children in that neonate stage, which I think still today is probably one of the last realms of action by medical practitioners (often the specialists), who are born, sadly, with significant disability or deformity—and there would be others in this house who have members of their family and who are more experienced than I am. It often means that the interventions that would ordinarily be available to other persons are not even available to these tiny babies because the frailty of their condition means they would probably not even survive anaesthetic to enable them to have that drug treatment or the like, as I understand it.

These are children for whom, as I understand it, the medical profession takes on the enormous responsibility to make the infant comfortable for as long as they can and as appropriately as they can, with water but no nutrition being provided and with no overt intervention to prolong their life, and so they slip away and are lost to their families.

I am not talking here, under this bill, about the decisions that we make as adults—either as a professional or as a parent—towards infants, but for adult to adult, because this bill, I think importantly, as does the current legislation which it is replacing, relates to adults appointing adults. There is no provision in here for infants and, of course, neither is there the capacity for an infant to be appointed as an agent or to provide as an agent.

The development of this review is one that I think probably most people in the house would accept is important, even on the basis that in 20 years of operation of legislation it is important to look at how contemporaneous the application is, particularly where there is medical advancement, and at the importance and the effectiveness of what we have developed.

In this instance there are a number of prongs. There was a case to at least look at the narrowing of that field and to provide an advanced directive model precedent able to be used for all types of decisions. I was concerned, and I think it was also of concern to other members of the public, who would come to us as local members to say, 'What has happened to the advanced directives bill? What has happened to the development of the bills out of the recommendations that were presented?'

It went on for a couple of years. By late 2009, just before the 2010 election, I recall there was some concern expressed in The Advertiser, which reported that a senior government source had said that the government was too petrified to open Pandora's box of end of life issues before the next general election. The then attorney-general was quoted in The Advertiser as saying that he had read the reports and he found their reasoning impeccable. He continued:

They will make life easier for thousands of families. The Rann government has a keen interest in making it easier for people to plan where and how they want to live, how they want their finances managed and what treatment they want to be offered.

However, notwithstanding that missive from the now member for Croydon, nothing happened. Disappointingly for me, and I think probably for a number in the house, this bill has now come to fruition without any provision for financial powers of attorney. I think there is probably a good case for the financial powers of attorney to be left in a category independent of what I would call the human and health side, lifestyle aspects, of the advanced directives.

One of the things that was important in the review in distinguishing between these two fields of appointment was that on the financial side of it, it might be that a person is quite comfortable in speaking to their financial adviser, their accountant, their lawyer, or other professional people (that is, non-medical people) about how they want certain assets to be managed or maintained during any period of incapacity.

It was seen as more in the impersonal area and that people could comfortably talk about that, whereas lifestyle issues and health matters, quite properly, are often very personal matters. If someone has a particular condition or disease that they would not want to be publicly known, they would only feel comfortable in speaking to a medical practitioner or health professional who had an understanding of the delicacy of certain conditions or disfigurement.

It might even be something as simple as a lifestyle choice and information that one might have. It might be simply embarrassing for someone to have to acknowledge that they have an incontinence problem and that they need certain accommodation and lifestyle services to provide for that, to support them in that. That is something that they would be comfortable in speaking about to their medical adviser or nursing staff, but certainly not to someone who would ordinarily be preparing their tax return. There is a case to separate them.

Personally, though, I am disappointed that the government has not come and tabled some proposed reform, if there is going to be any under this government, via the Attorney-General, on the powers of attorney. I think that that is well overdue and I would hope that the government has not abandoned that, and that there will be some advance from the Attorney-General in dealing with financial matters.

The aspects on which I wish to make some comment and which are independent of the general consolidation approach are, firstly, the lack of signing up to the current forms of advanced directive; and, secondly, the new dispute resolution process, some aspects on the form to be prepared and mutual recognition conditions, and the responsible person aspects of the Consent to Medical Treatment and Palliative Care Act.

Let me start by saying that the consolidation for medical powers of attorney, anticipatory directions and enduring powers of guardianship have been detailed as to the legislative base on which they operate, and their different applications were well covered, I think, in the minister's second reading explanation. The failure to take up these opportunities, I think, is significant, but not for the reasons that the government has outlined. I have never had a client come into my office as a legal practitioner and say, 'I don't want to do an advanced directive' or 'I don't want to do a power of attorney because the form's too complicated or because I might have to fill out two forms instead of one.'

Usually people come in with an issue and they say, 'I want to make provision for my will if I die' or 'I know that I have a terminal illness and I want to make provision for my funeral costs, my will, my accommodation, my medical treatment' and so they want the documents prepared to do that. They do not ask you whether it is going to be two forms or one form, or that that is going to be a basis upon which they make a decision to do it at all. I have never had that experience. In fact, they usually rely on the advisor to say, 'Well, you need a will, you'll need to have some authorities here, you may want to identify what treatment you wish to decline, and that can be done under the palliative care act, etc.' You then prepare the documents after they have made the decision—presumably subject to the cost advice you have given them—as to what they are going to have.

So the form itself is not the issue, in my view. There is, though, and I think this was touched on in the reviews but not presented really by the government, that death is not a happy subject. Even deteriorating ill health is not a happy subject: it is something that people are usually putting aside as a subject that they do not really want to deal with, and family members are frequently worse at coming to terms with the fact that there is an end of life process that is underway or there is a deterioration of health. There is a sort of head in the sand approach to some of this.

Even as legal practitioners we would say, 'Look, a will is great but you need to think about whether you are going to have an enduring power of attorney because there is every likelihood that you're going to have a period of diminished capacity prior to your death, and if you have someone reliable in your family, amongst your children or siblings, for example, who you might want to take this up or use a statutory group such as the Public Trustee.' I will not even start with them today, because that will be another whole day's worth if I start on the Public Trustee.

In any event, I make the point that, if prompted, people will look at these issues, but generally most of us or our children do not wake up in the morning thinking about whether they are going to avail themselves of the advanced directive procedure and think about acting responsibly for their future. That is just not on their agenda. They are in the business of living; that is, they are in the business of understanding about whether they have a job, taking their children to school and who is going to win the football. The idea of spending time, money or attention when they are young, fit and healthy is quite a foreign concept.

If it is the government's objective (and I think the briefing that we had from representatives of the team that is undertaking the work on this by the government and, incidentally, I thank them for providing that) I think it is very much focused in saying, 'This is an important issue.' I do not disagree with them—it is an important issue. We need to educate the public about the importance of doing advanced directives because lots of things can happen in people's lives way before they might be of a mature age and it would be an advantage to have documented and recorded what is important to them, what their goals and aspirations are in relation to future medical treatment or lack of intervention, or intervention, and the opportunity for them to define, detail and lay out their wishes in life, not just in death. It is an admirable aspiration.

I think the Hon. Jennifer Cashmore (a former member of his house), who I spoke to about this matter, who had set up the opportunity for advanced directives was disappointed, too, in the lack of uptake of this. However, I think we all need to understand that the people in this state are out there doing other things and they are out there living. This concept of preparing for end of life, even if it is going to be in a determined and foreseen way—that is, you have some advance knowledge of it—is not something that people generally want to direct their attention to.

I think it is fair to say that more and more people are encouraged—and there is an educative role that I think has been successful in this regard—to prepare for their funeral expenses. Again, it is just a little bit on the clinical side of things where they have to make lots of decisions about dying. They know one day it is going to happen and they think, 'We will make sure that we buy a package.' Indeed, funeral directors and so on have products now where you can buy a package to pay for everything to relieve your children of the burden of the cost of burying you, etc. So slowly but surely these things are advancing but it is not something that has a high uptake.

I think that the questions that are going to be raised are going to be quite significant. A similar type of situation is the directive or the consent to donate an organ. Probably members of this house have registered to donate an organ in the event of the termination of their life and to be able to donate corneas or kidneys and so on that would be life-giving to other people in South Australia, and they have signed up to do that. In fact, from time to time, there is consideration about whether we should have an opt-in or an opt-out system. At the moment we have an opt-in system where you consent to do it and you are entitled to have advice about that.

It is also designed to relieve that ghastly period, post usually a car accident, where a young person's parents are approached by an often senior medical practitioner to say, 'There is nothing we can do to for son or daughter but they do have healthy organs and are you willing to consent to them being provided?' That is a really confronting experience for any parent, of course, and a very sad one. However, people are all the more traumatised by having to make decisions like that in the midst of the distress that they are experiencing.

There have been educative contributions made to encourage people to think proactively about this and make those decisions. I have even had other young people of my own children's generation who say, 'Actually, mum I think that's a good idea and I think we'll sign up for this to make sure that we protect against the loss of my good healthy organs (the good bits) that could be used to save someone else's life.' I seek leave to continue my remarks.

Leave granted; debate adjourned.

[Sitting suspended from 12:59 to 14:00]