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Legal and Constitutional Affairs Legislation Committee - 15/10/2014 - Medical Services (Dying with Dignity) Bill 2014

KELLEHER, Mrs Terri, National President, Australian Family Association

PHILLIPS, Mrs Roslyn Helen, National Research Officer, FamilyVoice Australia

[10:30]

CHAIR: I call the Senate Legal and Constitutional Affairs Legislation Committee and its inquiry into the Medical Services (Dying with Dignity) Bill 2014 back to order. I welcome the Australian Family Association and FamilyVoice Australia. We have received your submissions, which we have numbered No. 6 and No. 40 respectively. These are parliamentary proceedings, so parliamentary privilege applies although we do ask witnesses to be cautious in comments they make about other individuals. If there is anything you want to say in private, you should raise that with the committee and we will see whether that is possible. If you want to make any amendments or alterations to your submissions, now is the time to do it. After that or in lieu of that, if you want to make a brief opening statement we would be pleased to hear it.

Mrs Kelleher : Thank you for the opportunity to appear here today. Am I able to hand up or provide you afterwards with a short supplementary submission?

CHAIR: Yes.

Mrs Kelleher : It does not make any difference to our submission; it just adds a little to a couple of the points we originally made. I know we are running very close to time. I will give a very brief overview.

First of all I would raise the issue of palliative care. Palliative Care Australia said:

PCA believes euthanasia and physician assisted suicide are not part of palliative care practice.

Our view is that if euthanasia and assisted suicide were legalised that would undermine the ethic of palliative care and caring for the vulnerable. There is also a danger that there would be reduced investment in improving palliative care by research and reduced need seen to increase the availability and access to palliative care. I do cover that in the submission—that is, the palliative care that is available in Australia today—and the number of palliative care specialists available, which is pertinent to the bill. One of the requirements is that there should be consultation with a palliative care specialist. In Australia we are very much under the minimum number of palliative care specialist per 100,000 people that is recommended.

I would like to make another mention of palliative care in the Netherlands and Belgium. There are papers that I am aware of—I have looked at them—that say that since legalisation of euthanasia palliative care has vastly improved in the Netherlands and Belgium. That would certainly be the case in comparison to the UK which set up its hospice system under Dame Cicely Saunders. They have an excellent system and always have done. I have a link to this document and I can email it to committee members if you want. On the face of it, it looks at palliative care in the Flanders region of Belgium and openly reports on 'the growing involvement of palliative care professionals and teams in the accompaniment of euthanasia'. Also, it says:

Today—

that was 2013—

one in two non-sudden deaths in Flanders occurs with the support of specialist palliative care professionals …

The point is that euthanasia is becoming or is already embedded in palliative care. Certainly it is in Belgium.

I attended a world symposium on dying with dignity and Professor Jan Bernheim appeared there. I referred to this in my submission. He drew a circle on a whiteboard representing palliative care, and within that circle he drew a circle representing euthanasia and physician assisted suicide. So it is certainly very much part of their palliative care. That report is saying that one in two—that is 50 per cent—cases of euthanasia or assisted deaths are facilitated or carried out by palliative care specialists.

I have not gone into the constitutional issues in any great detail, but in Australia criminal law is a state matter. The proposal for a federal law to legalise euthanasia and assisted suicide involves overriding the criminal laws of all states. I have set out in our supplementary submission all of the bills proposed in Australia to legalise euthanasia and assisted suicide since 2002. It is not all of the bills; it is just since 2002. In the states, all of them have been defeated. So when you are thinking of overriding the state criminal laws, it will be in the face of consistent opposition by the state parliaments.

I would also like to touch briefly on the artificial construct of defining as a medical service the act of killing a patient or assisting a patient to kill himself or herself. It is contrary to what to date has been the service and responsibility of the practice of medicine, which is to heal or make well and to alleviate the pain and distress of illness and disease. It has never been understood or accepted that to kill a patient is a way to achieve this. I think that raises a question—whether it is a constitutional question as to what 'medical services' in section 51 of the Constitution means or even a question as to the statutory interpretation of the normal meaning of 'medical service'. The direct killing of a patient or assisting them to kill themselves would not come within the definition of a medical service. It is an artificial construct. I set out in the submission the statements of the peak professional bodies across the world in opposition to assisted suicide and euthanasia. It is against the codes of ethics of those organisations.

Our concern is that the bill is not restricted to the dying, nor to persons experiencing unbearable pain, which is the usual reason for putting forward a request for euthanasia or assisted suicide to be legalised. I covered that in our original submission, but I would just like to make one extra point which I did not make there. In the way in which the bill is drafted, old age would come under the definition of a terminal illness—that is, degeneration of mental and physical faculties that in the normal course will result in the death of person. So under the proposed bill I think it means that persons would be able to request euthanasia or assisted suicide simply because they are old, lonely and isolated.

One further concern with the experience where euthanasia and assisted dying have been legalised is that the categories of those who can be euthanised have been extended by practice or by law. So even though it is a very wide definition and will even take in chronically ill people who would live for many decades with their illness if it were managed, even to old age, there is an expansion of the categories of those who can be euthanised once you legalise euthanasia. The Netherlands has, under the Groningen protocol, for example, extended euthanasia to newborns and children under the age of 12. This is not voluntary euthanasia because those persons cannot consent. In Belgium, the original voluntary euthanasia law has now been extended to those suffering from dementia and to children. I have a link to an article about that.

To summarise, legalising euthanasia or assisted suicide would undermine palliative care, in our opinion. Criminal law in Australia is a state matter. A federal law allowing euthanasia assisted suicide would override state laws that prohibit it, and the states have voted consistently against legalising it. The proposed bill would be open to constitutional challenge. It is questionable whether euthanasia and assisted suicide would come within the meaning of 'medical service'. Euthanasia and assisted suicide are against the codes of ethics of peak medical bodies. The bill will allow those who are not terminally ill or facing death in the immediate future to request euthanasia or assisted suicide. The experience in countries where euthanasia and assisted suicide is legalised is that it opens the way to expand the categories of persons who can request it.

CHAIR: To clarify, are you saying that in the Netherlands palliative care includes euthanasia?

Mrs Kelleher : In Belgium.

CHAIR: You are not suggesting that happens in Australia or elsewhere?

Mrs Kelleher : No. I was saying that that has happened in Belgium.

CHAIR: Thanks for that. Mrs Phillips, do you want to make an opening statement?

Mrs Phillips : Certainly. I am the national research officer with FamilyVoice Australia. We are a Christian ministry promoting family values, including respect for human life and respect for marriage. We also support the fundamental freedoms of association, religion and speech. We are concerned about this bill for three reasons. Firstly, we believe that there is a strong case that, should the bill be passed, it would be found to be unconstitutional. Section 51(xxiiiA), which talks about medical services that the Commonwealth is allowed to provide, has been discussed in a High Court ruling and we believe that part of that judgement shows the accepted standards of medical services. We do not believe that killing a patient or helping a patient kill themselves is part of the accepted medical standards of Australia.

Secondly, we believe that, although the bill has various alleged safeguards to prevent abuse, there are significant loopholes in virtually every one of them. We have discussed that in our submission. Thirdly, and perhaps even more importantly, we believe that legalising euthanasia will have a flow-on effect to the community or a sort of educative effect or cultural-change effect in which not just the terminally ill will feel that they can access this assisted killing but other people will feel that suicide is an acceptable solution to the problem of a painful condition. That painful condition may be temporary, but usually the person at the time cannot see past it. The effect of passing this bill would be to make it seem normal to commit suicide. I believe it would undermine community morale in a very damaging way, not just for the old but also for the young.

CHAIR: Thank you very much, Mrs Phillips. I thank both of you for your written submissions and for being here today.

Senator LUDWIG: Yes, thank you for your submissions. I have only a short question really. Your argument in one part ostensibly is that the Commonwealth does not have legislative competence to enact this bill and that the states do. You could then have a state legislative scheme that would give effect to this bill.

Mrs Phillips : Yes.

Senator LUDWIG: Thank you.

Senator DI NATALE: What constitutional advice did you receive in coming to that opinion? What constitutional lawyers did you consult with?

Mrs Phillips : I consulted people with legal expertise in the area of constitutional law. They referred us to the High Court case of Wong versus the Commonwealth. Would you be familiar with that?

Senator DI NATALE: No; I asked specifically about the nature of the advice. We heard in an earlier submission from constitutional lawyer Professor John Williams and from Ms Olijnyk and Dr Gabrielle Appleby, that they believe that the bill is constitutional.

Mrs Phillips : I am aware of those arguments.

Senator DI NATALE: I am just interested in who specifically you consulted with to come to your opinion on the constitutional validity of the bill—not the nature of the advice.

Mrs Phillips : I do not wish to name our advisers, but I believe that they have considerable experience in this area. I have myself looked at the High Court judgement—

Senator DI NATALE: What constitutional experience do you have, Mrs Phillips?

CHAIR: You can read.

Mrs Phillips : I can, indeed. I can read judgements and I can read the plain meaning of words.

Senator DI NATALE: Does that mean that we have 20 million constitutional lawyers in Australia?

Mrs Phillips : Does that mean that we have 40 million different opinions? You ask two lawyers and you get at least three opinions. I think there are very clear reasons that some would disagree, with respect to Professor John Williams and Dr Gabrielle Appleby. I have read the submission from the Adelaide Law School, where they argue similarly that the bill is—

Senator DI NATALE: I am not trying to be—

Mrs Phillips : I do not agree with their reading of the words.

Senator DI NATALE: The reason that I am asking that question is that there are different views and I expect if this bill were to pass it would be tested in the High Court.

Mrs Phillips : We quote Justice Kirby.

Senator DI NATALE: My question to you was whether you had sought specific advice from constitutional lawyers and if you were prepared to tell us about who that advice came from or whether you are relying on some of the submissions to the committee.

Mrs Phillips : No, I am not relying on other submissions but on other people's advice.

Senator DI NATALE: Mrs Kelleher, one of your contentions is that this bill would undermine palliative care.

Mrs Kelleher : Yes.

Senator DI NATALE: Yet you also acknowledge the research from Belgium, which is that the experience there was in fact very, very different and there was a significant increase in the level of investment in and the number of people accessing palliative care options when this legislation was implemented. I am not too sure how those two positions are consistent.

Mrs Kelleher : They do, because euthanasia as an option and assisted suicide have become part of palliative care. The extension of palliative care has gone along with the legalisation of euthanasia and the number of people who are actually dying from non-sudden deaths—which I take to mean 'planned'. When you are talking about palliative care, let's have a look at the sorts of care that they are providing. They are palliative care specialists. I am saying that they are being used to actually kill patients rather than to provide comfort and the care that is to be given at the end of life. They have mobile home care teams, where they actually go around in a bus or a conveyance and take euthanasia out to these people. It all comes within palliative care. I am saying that it has undermined real palliative care. The palliative care associations world wide say, 'No, euthanasia and assisted suicide are not part of palliative care.' Whether they are opposed to euthanasia assisted suicide or not. They say it is not part of palliative care.

Senator DI NATALE: But the experience in Belgium is that it has led to non-physician dying palliative care options being taken up at a greater rate.

Mrs Kelleher : Well, these are palliative care specialists.

Senator DI NATALE: My response to you—just to tease this out—is: as a result of this legislation, there are more people in Belgium making use of non-physician assisted dying. But let's put that to one side. But there are more people accessing other palliative care options as a result of this.

Mrs Kelleher : No, they are being recorded as accessing palliative care, but it what it is not really a great deal of face-to-face interaction between these patients and a physician. They are getting access to euthanasia or being euthanised—some of them on their request. I am saying that I think it has inflated the expansion and growth of palliative care in Belgium. I think that is what it is showing.

Senator DI NATALE: That is not consistent with any of the evidence we have heard. All the evidence that we have heard and we have taken through submissions is that there are more people accessing palliative care and not, let's call it, euthanasia—

Mrs Phillips : How would you know, if it is all called palliative care and it includes euthanasia?

Mrs Kelleher : It is part of palliative care.

Senator DI NATALE: The evidence that has been presented is very straightforward. There is an extensive collection of data in this area and it is very easy to work that out.

CHAIR: I would just remind my colleagues and myself that we will have the debate in the Senate some time. We are not here to debate with witnesses; we are here to ask questions.

Senator DI NATALE: I am not debating; I am just trying to tease out this issue.

Mrs Kelleher : Senator, have a look at the link. I can send it if you want it online and you can just click on the link.

Senator DI NATALE: Sure.

Mrs Kelleher : That was a report on palliative care and the expansion of palliative care in Belgium.

Senator DI NATALE: What I am putting to you is that I have seen evidence that in Belgium there are more people accessing what we call palliative care in Australia than there were before the implementation of this legislation—not the broad umbrella which includes physician-assisted dying or euthanasia. You put the Palliative Care Australia position. Does Palliative Care Australia oppose this legislation?

Mrs Kelleher : I have to say, I do not know. Certainly their position on euthanasia and assisted suicide is that it is not part of palliative care.

Senator DI NATALE: But they do not oppose physician-assisted dying?

Mrs Kelleher : I do not know. You would have to see if they put in a submission.

Senator DI NATALE: I would be surprised if you are quoting Palliative Care Australia that you do not know what their official position is.

Mrs Kelleher : That is their position on euthanasia and assisted suicide—that it is not part of palliative care.

CHAIR: You have asked the question and the witness has said that they do not really know. Perhaps we could go to the next question.

Senator DI NATALE: We are short of time, so I am happy to move on.

Senator KETTER: I have one question of both Mrs Phillips and Mrs Kelleher. If Senator Di Natale's bill were passed, we would have a new situation where voluntary euthanasia would be a legal option available to the general public under the said circumstances. Could you give us an assessment of how having a legal option available to take this service might impact on perhaps the elderly or those coming to the end of their life? What impact do you think that would have?

Mrs Phillips : I would like to answer that with a personal story. Some years ago a very prominent couple, who were members of the Voluntary Euthanasia Society, used the information provided by that society to suicide together. They had reached the age of 75 and effectively decided that they did not want to grow old. That was widely reported. That couple was close to our family. A year later I had the very traumatic experience of trying to persuade another closer member of my family not to do the same. I went to her doctor to share some of the problems I was facing and he said, 'You have no idea the impact that that double suicide had on my practice.' He said, 'I had many patients who were old, who had all the little aches and pains and other problems that you get as you grow older, and they had been doing well and had a very positive outlook on life. But, after this double suicide, I started getting requests to help them do the same.' He said, 'It has been a very difficult time for us.'

I believe that the reason that it had that effect was that the couple were widely known and respected. It had the effect on people who knew them where they said, 'We should do the same.' Should this bill pass, I would see this on a much wider scale. I am deeply concerned because teenagers will also be affected by the message, 'Suicide is the answer to your pain.'

CHAIR: Doesn't that demonstrate that people make a choice—people who are clearly rationale—and that is what they want to do?

Mrs Phillips : At the time when I had to persuade the close family member, she was suffering deep grief from the loss of her husband and she saw this as an answer to her deep grief.

Mrs Kelleher : I can give a personal example, too. My mother is in an aged-care facility. She has all her faculties. She is very sharp. I am the one of all my siblings who looks after her. I find that I do have to intervene on a regular basis, even with the staff in the aged-care facility. The facility is very good and the staff are very caring, but they are looking after a lot of people. What she says and what she might want they will ignore, and then I will have to ring up. I am also in contact with her doctor. I consider that my mother could make a definite decision. She would make a decision about this one way or the other. But I could also see that she could very well be persuaded that this was the best thing for her if she did not have any other advocate—that is, me. I have intervened and discussed with her certain things that she was refusing—medical treatment or tests and other things that she said she did not want—and I was able to negotiate it. They do not listen to older people, yet my mother is not suffering from dementia at all. I am just tried to point out to you that I think people can be really vulnerable.

CHAIR: You relate my personal experience, but isn't that your mother's decision rather than yours?

Mrs Kelleher : It is. I would speak to her. I don't deny—I don't step back from it—that if I thought my mother was asking to be knocked off I would try to persuade her otherwise, but it would ultimately be her decision, and she is very well able to make it. I can see that she could also be persuaded to indicate that she wanted something that if I or any of my sisters of brothers spoke to her about she may very well have a different opinion about. She comes from that generation where people would accept the view of those that, especially, they see as professional. We are all very devoted to our mother, but she is very anxious not to be a burden.

Senator SINGH: Doesn't that show the danger, through not having any effective law, of how people could be forced into suicide? If you had an effective law in place then people would have to abide by that law.

Mrs Kelleher : Who is going to force them? I am just saying that if it is legal it can be suggested, but if it is not legal then you cannot even suggest it. It is not an option. In fact, its not being there is a protection so that kind of suggestion simply could not be there.

CHAIR: Have you discussed it with your mother, and she's come to the conclusion that she is happy the way things are?

Mrs Phillips : It is very easy for a patient who does not have that kind of family support to be persuaded that they are a burden and would be better off dead.

Senator SINGH: But if there was in place an effective law like the one that is before you, like those in other jurisdictions in the world, which have particular safeguards, they have particular—

Mrs Kelleher : So that is what you mean by effective, that they have safeguards.

Senator SINGH: They have particular conditions within that law that have to be met for a person to have the avenue to access voluntary euthanasia.

Mrs Phillips : Have you read in our submission about all those other jurisdictions?

Senator SINGH: I have read your submission. I was about to ask you some questions on it. I was just waiting for the chair to give me the call.

Mrs Phillips : It points out where the safeguards are not safe.

CHAIR: You have the call now, very briefly.

Senator SINGH: Thank you. Mrs Phillips, first I want to thank you for being upfront in your introduction in highlighting that you are part of a Christian organisation. In saying that, you talked about fundamental freedoms that you uphold. I presume that that would include the freedom of religion and belief.

Mrs Phillips : That is right.

Senator SINGH: You talked about the fact that a painful condition might be temporary and about the concern that you have about people making a decision on that basis. What if the painful condition, the suffering, is not temporary?

Mrs Phillips : The problem is that in the very, very small number of cases which were discussed earlier today where the patient cannot be adequately relieved they can be sedated. But I believe that if we pass this law there will be pressure not to research palliative care in the way that it needs to be. I think it was Dr Prichard who said, 'Can't we do research to deal with those very, very small number of cases that can't be adequately relieved at the final point of life?'

Senator SINGH: You are saying that it is all right to sedate someone?

Mrs Phillips : It solves their problem, maybe not in the way they would prefer, but it means that nobody has to die in pain. That is the result. I have spoken to palliative care specialists and that, effectively, is what they tell me.

Senator SINGH: When you say sedate, what do you mean?

Mrs Phillips : Effectively, put into a coma.

Senator SINGH: You think it is humane and compassionate and you have empathy to put someone in intolerable suffering into a coma—

Mrs Phillips : Where they are no longer suffering, but not to directly kill them.

Senator SINGH: rather than to allow them to have the choice of having voluntarily assisted euthanasia?

Mrs Phillips : You are saying there is a right to die. I do not believe there is. We argue that in our submission. There is no such thing as a right to die. The reason is that once you allow people to employ doctors to kill them you are opening the gates, as I have explained, to a widespread lowering of community morale.

Senator SINGH: Those slippery slope arguments—

Mrs Phillips : It is not a slippery slope; I think it is a direct result.

Senator SINGH: Your comments earlier were that this will lead to young people and other people, and that is the slippery slope argument. Have you read some of the literature in relation to that? A Royal Society of Canada expert panel is currently, as you know, in the UK. There is a bill in the House of Lords and there has been expert advice given on that. Quebec recently passed legislation. There is also an expert report on that. A select committee similar to this went through a very extensive process. All of those reports refute the argument that this will lead to the slippery slope situation. In fact, I think that Mrs Kelleher, herself, highlighted earlier that in the Netherlands, I think you said, palliative care had improved under—

Mrs Phillips : I would not say that. We give evidence that it has not.

Mrs Kelleher : It has expanded.

Mrs Phillips : It includes euthanasia.

Senator SINGH: I have a report that says there has been an improved end-of-life-care practice, especially towards the tenants of palliative care in the Netherlands. I can provide you with a copy of that.

Mrs Phillips : We have evidence to the contrary.

Senator SINGH: Okay, we will not debate that.

Mrs Phillips : In Belgium in particular there is very clear evidence of your slippery slope of greatly increased flouting of the so-called safeguards.

Senator SINGH: What sources do you have for that?

Mrs Phillips : If you read our submission, it is documented. In fact, there is in particular an article in the Brooklyn Journal of International Law, subtitled 'The Netherlands' steady march towards involuntary euthanasia', citing what has happened in the Netherlands, contradicting some of the claims that were made by other witnesses.

Senator SINGH: What page in your submission is that on?

Mrs Phillips : It is in the endnotes, on page 11, referring to halfway down page 2:

Experience in the Netherlands shows that once the power of death is given to doctors, respect for life diminishes. Before voluntary euthanasia was formally legalised in the Netherlands in 2000, several hundred patients a year were put to death involuntarily. This number has not changed since voluntary euthanasia was legalised and regulated.

That is quoted in the article in the journal I mentioned. There have been other doctors saying that in the Netherlands palliative care is not good. It certainly is not nearly as good as it is in the UK.

Senator SINGH: Are you aware that terminal illness is not and has never been a requirement for euthanasia?

Mrs Phillips : I have sat through debates on euthanasia bills in South Australia since 1995. There have been about 14 before the parliament. Each time, the sponsor of the bill has said, 'This bill is watertight. It's completely safe.' I have even heard one of them say that and then come back another year with another bill and say, 'I've improved my bill and it's now safe.' In other words, implying that what he said about his earlier bill was not correct. All of them have had loopholes in that they have allowed more than terminal illness as a reason for euthanasia and their so-called safeguards have loopholes that, in some cases, you could drive a truck through. I have seen many euthanasia bills debated and defeated.

Senator SINGH: Finally, I will just refer you to The Royal Society of Canada expert panel—I can provide you with a copy of that report, if you would like—because it clearly argues that terminal illness has explicitly been rejected as a condition necessary for granting the request for voluntary euthanasia.

I know that you raise the burden issue for people. Would you not say that it is more about people concerned about the impact on their family and friends—seeing them and having them with them going through this incurable, terrible and intolerable suffering? Rather than a burden?

Mrs Phillips : If the palliative care is good, I would not use those extreme words.

Senator SINGH: I know that by 'good' you mean sedation into a coma—

Mrs Phillips : No.

Senator SINGH: What do you mean?

Mrs Phillips : In 99 per cent of cases there is no need for sedation. If you heard the evidence given by Dr Megan Best at the earlier hearing, she is the palliative care specialist and she explained that it is a tiny number who cannot be relieved in other ways. Palliative care has come a very long way in the last 10 or 15 years.

I recall the case of my aunt, who was dying at the age of 101. She was put in hospital and was asking to die—she was in intolerable pain. Her relatives came to visit and they were horrified. My daughter came to visit—she is a pharmacist—she looked at the chart at the end of the bed and was horrified that my aunt had not been given pain relief. My daughter hit the roof; pain relief and palliative care were provided and my aunt died very peacefully and very comfortably. That is the difference that good palliative care makes and, sadly, it is not happening as it often is it should be. But that is where we should be directing our efforts, not to what some doctors would see as the easier one of euthanasia.

CHAIR: I am afraid we might have to call it quits there, but I just have one question. I am fairly neutral on this; I am waiting to be convinced by one or the other. In the issue you raise about older people feeling they are a burden on the family and they want to get it over and done with but they are not allowed to: what do you say about the proposition that they perhaps then spend the rest of their lives—wrongly—worrying about being a burden on their family and being very unhappy—wrongly—thinking they are a burden. So they are being forced to continue the rest of their lives worrying—wrongly, again I say—that they are a burden. What do you say to that proposition? Both of you, obviously, have experienced the same sort of thing.

Mrs Phillips : I think it has a lot to do with palliative care. Palliative care is not just providing pain relief; it is emotional pain relief; dealing with these sorts of feelings and easing those worries. If it is probably given then I think it solves that problem.

CHAIR: I come from country Queensland and that sort of support may not always be available around Australia.

Mrs Phillips : True, and improvements need to be made. As Dr Best said in her evidence, when she trained as a doctor they were not taught anything about palliative care. It is an area that really needs to be improved.

CHAIR: Thank you. We might have to leave it there. Thank you very much for your very thought-provoking submissions and your evidence. We very much appreciate it.