Euthanasia talk – ACL State Conference – Western Australia

Becoming activists in the fight against legalised euthanasia and assisted suicide

Firstly I would like to acknowledge the work of Paul Russell over many years in fighting euthanasia and assisted suicide. I am sure that Paul is known to many of you – HOPE is the legacy that he has created through his dedication, hard work and vision. He understands deeply the threat that the legalisation of assisted suicide poses to our country and to the most vulnerable members of our society. I would like to pay special tribute to him for the incredible work he has done.  He has left very big shoes to fill, and I am very grateful and honoured for the opportunity to take up the fight where he has so capably finished it.

 

There has been so much written about the topic of euthanasia and assisted suicide. It is a topic that divides our community sharply, and according to polls, is consistently supported by many in our community (I’ll dissect that polling a little later on in this talk).  This issue has come to prominence here in Western Australia with the parliamentary committee handing down its report last week recommending that assisted suicide be legalised in the state.

Before I begin with the substantive topic of euthanasia and assisted suicide, I would like to talk firstly about a broader issue surrounding the way that we on the conservative side of cultural and social issues sometimes engage in politics and in particular in public debates. By ‘conservative’ I don’t mean in a party-political sense; rather I am trying to capture those of us who take a conservative position on social and cultural issues. In the past decade, in particular, it can feel as though public debate and politics in general are dominated by those advocating for radical change in our society. What were universally held beliefs some 20 years ago are now relegated to the extreme category, and seen to be ‘outside’ of mainstream thinking. How is it that this has happened?  Some excellent work has been done by two conservative commentators in the US, Maggie Gallagher and Frank Cannon[1], who make the argument that conservatives have focused on the culture war and neglected politics, to their detriment.  They argue that whilst it is true that politics responds to the culture, it is also true that politics influences the culture. We can sometimes feel that politics is not ‘pure’ or that it is an arena that we shouldn’t get involved in until we change the culture. However, it is through our engagement in politics, engaging in debates and investing money into political campaigns and candidates, that we can change the culture and shift votes to support our causes. In this regard, they identify three important factors:

Firstly, ‘issues preferences must be deeply felt’.  Gallagher and Cannon make the point that ‘a passionate minority can move mountains in elections.’ We only need to look at a group like GetUp! in Australia, who wield enormous political influence in the country.  We don’t need to agree with the values of GetUp! but we can learn from their approach, which has to date resulted in a small vocal minority exercising incredible influence over politics and policy.

Secondly, it is critical that parties and candidates take up manifestly different positions on the issue. The consequences for politics and culture are most dramatic when two parties take up clearly articulated and opposing stands. Conversely, when only one of the parties takes a strong stand and the other party is silent on an issue or ignores it completely, cultural consequences follow.

And thirdly, to sustain the cultural impact of political involvement, those wanting to effect change must keep their commitments on the political agenda over the long term.

Their remarks are specifically focused on the political landscape as it relates to the United States, however their broader critique translates to the situation here in Australia. A very significant factor they point to is the disparity in funding as between groups when it comes to political spending. As an example, they point to the difference in the amount of money spent by conservative organisations dedicated to changing public policy on a number of conservative issues (in the US) and their opponents. They calculate that between 2007 and 2014, those conservative organisations spent just under $75 million in direct political spending. By contrast, they identify two opponent organisations in the US who spent almost that same amount of money in 2016 alone. In other words, only two organisations on the left will spend in one year almost as much on direct political action as all socially conservative organisations combined spent between 2007 and 2014. [1]

We are being out-organised and outspent. And when we are silent on issues, we lose the debate. And to quote Maggie Gallagher and Frank Cannon:

“When only one side is willing to speak enthusiastically about a prominent issue, people begin to believe there really is only one side. The polls shift quickly as the hearts and minds of the mushy middle move toward the only visible position. If only one team is on the field, it wins by default”[2]

We must engage. We must fundraise and we must get into the arena and join in the fight. When we vacate the public sphere and when we vacate the debate, the other side wins. By default.

And so it is with euthanasia and assisted suicide. The pro-euthanasia advocates would have us believe that change is inevitable and that it is only a matter of time. But it is important that those of us who understand how important this issue is do not allow one side to dominate the narrative. And we must definitely not remove ourselves from the discussion or the debate.  We must engage.  It is the engagement to date and the willingness of people to speak up against euthanasia that has helped us win so many victories. And here in WA is where the next battlefront on euthanasia is being played out.

Arguments against the legalisation of euthanasia and assisted suicide

As a starting point, if we are going to engage in the fight, it is important that we are equipped with the evidence and the arguments to make our case convincingly.

Euthanasia and assisted suicide, are often referred together and sometime used interchangeably; however, they are distinct terms.

Euthanasia refers to an act undertaken (usually) by a physician to intentionally end the life of a person at his or her request. The lethal substance in the case of euthanasia, is administered by the physician. Assisted suicide is the term to describe where a person self-administers a lethal substance prescribed or provided to them by the physician.

Euthanasia has been legalised in the Netherlands, Belgium and Luxembourg, and Assisted Suicide has been legalised in the United States in Oregon, Washington State, Vermont, California, Colorado and Washington DC.  It has also been legalised in Canada. In Switzerland, through loopholes in the legislation, non-physicians are allowed to assist people to suicide as long as they don’t have selfish motives and don’t make money out of it. This was the jurisdiction where Doctor David Goodall, the 105-year-old Australian scientist who was ‘tired of life’ went to take his own life.

In Australia, assisted suicide was legalised in 1996 by the Northern Territory government and the scheme was in place for almost 9 months. The Northern Territory legislation was overturned by the Commonwealth in 1997 in what has come to be known as the Andrews Bill. This legislation was the subject of a Senate debate in the Federal parliament two weeks ago, and was narrowly defeated by 36 votes to 34. And of course, the Victorian parliament passed the Voluntary Assisted Dying Bill in 2017. This legislation is due to commence mid 2019.

It’s important, that if we are going to enter the fight, that we are equipped with evidence-based arguments to refute the false claims made by the other side. Here are 4 important arguments against the legalisation of assisted suicide:

1. You cannot give some people personal autonomy without putting at risk other people’s lives, who are vulnerable due to old age, isolation, disability, mental health issues.

The main argument used by proponents of euthanasia and assisted suicide is the personal autonomy argument. “I should be allowed to choose the time and the manner of my death”. The Western Australian Committee’s report is aptly titled “My Life: My Choice”. In our increasingly individualistic society, the focus is on the individual and their rights. However, the truth is that you ‘cannot legislate to expand the range of choices for some individuals without putting at risk the autonomy of others in our community who are vulnerable due to socio-economic status, disability, gender, isolation and loneliness or those experiencing elder abuse’[3].  A regime in which assisted suicide is made legal and in which the decision to ask for assisted suicide is therefore positively affirmed as a wise choice in itself creates a framework in which a person with low self-esteem or who is more susceptible to the influence of others may well express a request for assisted suicide that the person would otherwise never have considered. Data from Oregon[4] (from the government’s own statistics) shows that in 2016, nearly 1 of 2 (48%) people who died after taking prescribed lethal medication cited concerns about being a “burden on family, friends/caregivers” as the reason for their request.  In 2017 this has increased to 55%. Those who don’t have the support of family and friends, those who don’t have access to palliative care services, those who are lonely or isolated will be put at risk by the introduction of such laws.

As Paul Kelly, Senior Editor at The Australian newspaper has noted:

“Euthanasia is different: it is an act that terminates life. It is, therefore, by definition not a private affair; not just about a patient’s right. It is a public and society-wide issue because it involves the state legalising killing subject to certain conditions. That is a grave step and it concerns everyone.”[5]

2. There is no safe way to legislate for euthanasia.

There is no safe way to legislate for euthanasia, as overseas experience demonstrates. The most recent report of Belgium’s euthanasia regime details the euthanasia of three children, 77 people suffering from mental health issues and 173 people with no physical suffering, who were instead experiencing afflictions such as addiction, loneliness and despair.[6]

In the Netherlands, there have been no prosecutions for violations of safeguards in the past 15 years, even though its Euthanasia Commission details frequent breaches of the law.[7]

In the United States, insurance companies are denying coverage for chemotherapy, and instead offering assisted suicide medication, demonstrating that providing ‘choice’ for some does, in effect, limit choice for others.[8]

3. Doctors are against euthanasia and assisted suicide.

The Australian Medical Association (AMA)’s Position on Euthanasia and Physician Suicide is as follows:

“The AMA believes that doctors should not be involved in interventions that have as their primary intention the ending of a person’s life. This does not include the discontinuation of treatments that are of no medical benefit to a dying patient.”[9]

In addition, 105 Australian palliative care specialists last year signed an open letter, pleading with the Victorian government to not legalise it, asking instead for adequate resources to help them to care for those at the end-of life. They rejected the active and deliberate undermining of their work in an effort to push these laws through. The vast majority of palliative care specialists and cancer specialists oppose the practice.

Across the world, 107 of the World Medical Association’s 109 constituent National Medical Associations oppose euthanasia and assisted suicide.

4. Assisted Suicide offers the myth of a compassionate and peaceful death.

Data from longitudinal studies in Oregon found that 3% of assisted suicides had complications, including distressing symptoms. And that’s in the cases that the authorities know about. In the Netherlands, an analysis has shown that 7% of people experienced unexpected side effects, including regaining consciousness, vomiting, gasping for breath and seizures.[10]

Joint Select Committee on End of Life Choices report – Western Australian parliament

The next focus for the euthanasia debate in this country will be squarely on Western Australia, following the release of the report of the Joint Select Committee on End of Life Choices of the Western Australian parliament (Committee).  The Committee’s report is the end result of a year-long inquiry and ultimately, recommended the legalisation of euthanasia and assisted suicide in that state.

Even at 608 pages, the sizeable report nonetheless fails to address or casually glosses over key concerns about the consequences of the legalisation of euthanasia and assisted suicide.  In an attempt to discredit any serious critique of the gaping holes within the report, the Committee predicts that any criticism of the report will come from those opposed to euthanasia and assisted suicide, and dismisses it as lacking “rigorous evidence” to back it up.

Notwithstanding the Committee’s unwillingness to address concerns about the evident holes in the report, it is important that we flesh those out.

I’ve identified some key aspects of the report that are concerning and should be challenged.

Death doesn’t need to be imminent

In the report, the Committee declares that requiring death to be expected to occur within a predicted timeframe means that “some individuals being unfairly excluded.”  Accordingly, it recommends that euthanasia and assisted suicide be available to those even who are expected to live for many years after they request to die.

A patient doesn’t need to be suffering from a terminal illness to access euthanasia

The Committee has recommended that an illness need not be terminal in order for a person to be eligible for euthanasia or assisted suicide, but simply that they be experiencing “grievous and irremediable suffering related to an advanced and progressive terminal, chronic or neurodegenerative condition that cannot be alleviated in a manner acceptable to that person, where death is a reasonably foreseeable outcome of that condition.”

It is important to note that the test of whether the suffering can be alleviated is a subjective one; ie, completely the decision of the patient.

Physical symptoms are unnecessary, with “existential suffering” deemed sufficient for euthanasia

The report equates “existential suffering” with other types of suffering and distress, and argues that because existential suffering is subjective, it may not be relieved by palliative care.  The Committee uses this to further its claim that not all end-of-life suffering can be palliated, and thus support its proposal for legalised euthanasia and assisted suicide.

WA has the lowest number of publicly-funded palliative care beds per capita in the country

In the report, the Committee acknowledges that “Western Australia has the lowest number of publicly funded in‐patient beds per capita and access to specialist palliative care is limited across the state.”   It goes further to say that access to palliative care is further limited in rural areas and “almost non-existent in remote regions” and acknowledges that it is tied with South Australia with the “second lowest number of FTE palliative care nurses per capita” as well.  Even so, the Committee does not require the palliative care situation to be rectified – and Western Australians be given real choice in end-of-life options – before euthanasia and assisted suicide be implemented.

Additionally, the Committee also included in the report that Palliative Care Western Australia had told the Committee that the low number of publicly available palliative care beds meant that wealthier and better-educated people have better access to palliative care, with services clustered in “areas of high socioeconomic advantage.”

This is especially alarming given that the Committee also found that “access to specialist palliative care in the early stages of a diagnosis might improve remaining quality of life, mood, resilience, symptom management and allow for death in the patient’s preferred location.”

WA has the lowest uptake of Advance Care Planning in the country

The report has found that the rate of Advance Care Planning instruments for adults in Western Australia is just over half the national average (7.5% and 14% respectively.)  The Committee blames this on a poor understanding of Advance Care Plans in the medical profession and the general community and – tellingly – that medical professionals are unprepared to talk about death and dying with their patients.  It also found that the benefits of palliative care would be more readily available to patients “if difficult discussions about death and dying took place earlier.”

The Committee does not explain why it considers that health professionals who are unwilling to frankly discuss death and dying with their patients in the context of palliative care and Advance Care Plans will suddenly be able to adequately converse with them about so-called “assisted” death and dying.

Doctors lack appropriate education in terminal sedation, a process that could assist the small percentage of patients for whom palliative care is not suitable

The report states that confusion amongst health professionals around terminal sedation “is likely to result in the denial of adequate symptom relief to some patients at end of life.”

Education about terminal sedation is important because, in an open letter from more than 100 palliative medicine specialists written last year, the specialists stated that the rare cases in which palliative care is insufficient for pain management (estimated by the Committee in the report to be between 2% and 5%), terminal sedation works.

The Committee fails to address concerns about the expansion of euthanasia regimes overseas

The Committee attempts to dismiss credible concerns that the availability of euthanasia and assisted suicide will expand to more groups if legalised by setting up a straw man argument which it then proceeds to destroy.  The report acknowledges that Belgium expanded its law to make euthanasia available to “legally competent minors,” but suggests that this could not support a “slippery slope” argument because the same change has not also occurred in Oregon, a jurisdiction in which assisted suicide is legal.

It seems that the Committee’s view is that, until all jurisdictions make euthanasia and/or assisted suicide available to minors, the “slippery slope” argument holds no water. 

The Committee fails to address the issue of suicide contagion in places where assisted suicide is legal

The Committee dismisses concerns about suicide contagion (ie, the risk that the legalisation of assisted suicide increases the overall suicide rates) by again, setting up a straw man argument.  It refers to a single study, conducted by Jones and Paton, and comments that there is “some dispute in the academic literature” about its accuracy.  Based on this alone, the Committee dismisses the suicide contagion risk.

However, the Committee does not address other statistics, including ones that originate from government bodies.  For example, a report prepared by the Oregon state department has found that the suicide rate has been increasing since 2000, and that in 2014, Oregon’s suicide rate was 43.1% higher than the national average.  It does not acknowledge these figures, let alone provide any explanation for them.

The Committee needs to be held to account for this obviously biased report.  Thankfully, one Committee member, Nick Goiran MLC, studiously created his own dissenting report, itself some 200+ pages.  I urge you to read his report, which provides a thorough, evidence based argument against the legalisation of euthanasia and assisted suicide in this state.

The political fight in Australia

It must be remembered that to date, the story has been a positive one in relation to the wins we have had on euthanasia in Australia. Despite the numerous attempts in many jurisdictions to change the law (between 1993 and 2016 there had been 51 attempts), there has so far been only 2 that have succeeded; the Northern Territory (which was then subsequently overturned), and last year in Victoria.

In speaking with a medical professional about the vote in Victoria last year, I was struck by his observation that the result was one that was triggered by politics, rather than the substantive issue of euthanasia and assisted suicide. The vote was won by just 4 votes in the upper house. In other words, what he was getting at is that there were other factors at play that resulted in the politicians voting for the bill rather than just the issue itself that was the subject of the legislation. It is rare that there is only one input into a decision-making process. It is important therefore that in any future battles, we run multi-faceted campaigns that acknowledge that political strategy, grassroots activism and issues advocacy are the three cornerstones on which successful campaigns will be fought.

When the Northern Territory legalised assisted suicide in 1996, it was the first jurisdiction in the world to do so. Undeterred, opponents of euthanasia realised this wasn’t the end of the story for the territory, and fought a campaign to overturn the legislation on the basis of the Commonwealth’s legislative power under section 122 of the Constitution. They were successful, with the Andrews Bill being legislated in 1997 and remaining on the books for 20 years.

Similarly, in the recent vote in the Senate, when we first read of the supposed deal between the former Prime Minister and Senator Leyonhjelm that he would allow a conscience vote on a bill to overturn the Andrews Bill, given the make-up of the Senate, all indications were that the vote would be won easily. Indeed, the activists working behind the scenes on behalf of Senator Leyonhjelm were publicly and privately confident that they had the numbers.  However, the approach that we took (and there were many people and groups who worked on the campaign to stop this bill) was one that didn’t take any vote for granted, recognising that different senators would approach the vote in different ways. As was the case with the campaigns in Victoria and New South Wales, we recognised that it is imperative, on an issue such as euthanasia, that we get medical professionals and experts in the field to sit down with politicians and talk through the practical implications of what they were being asked to vote on. This ensured the parliamentarians were given evidence based information to guide their deliberations and made sure they were not only being persuaded by populist and hollow slogans. Providing opportunities for individual politicians to meet with doctors and experts and really talk through the hard questions was invaluable in changing minds on this issue. To this end, we organised a parliamentary briefing for Senators and also prepared an MP pack to send to all senators in the lead up to the vote.

We also recognised that it is important that politicians hear from their constituents on issues that matter to them. Through HOPE, we organised a petition and a targeted campaign of emails from constituents to their senators, expressing their views on the issue. During the short campaign, 5,468 individual users took action to email their elected representatives to express their opposition to the bill. This grass roots activism is powerful when combined with direct lobbying of politicians and cross-party co-operation.

I note that in a newspaper article[11] following the Senate defeat, Senator Leyonhjelm has written the following, and I quote:

“What we need is for some senators who voted against my bill to lose their seats, and senators who voted for it (including me) to retain their seats.”

In other words, our opponents are focused on the politics and going forward will be doing the work to elect candidates who support their position and target those who didn’t to remove them from office. We need to have the same targeted approach when it comes to politics. It is in the parliamentary chamber where legislation is made. If we are not in the parliament we are not in the game.

Finally, as we engage in the political fight, is important that we tell our stories about our loved ones. We are now very used to hearing pro-euthanasia advocates sharing their distressing and devastating stories of loved ones who suffered before their death as a justification for their positions of support. Yet there are so many really good stories that can and should be told about a loved one who had a positive experience of palliative care. We have so many talented and dedicated palliative care workers and medical professionals working every day in our hospitals, and there are thousands of stories that can be told. If we don’t tell these stories, there are many people who will never hear them and never know that there is another way other than just taking a lethal prescription.

Polling

I would like to make some final remarks about polling in relation to euthanasia.  Pro-euthanasia advocates constantly refer to the polls which show a high level of support in the community for assisted suicide.  These polls don’t tell the full story, and we are all well aware of the tactic of using opinion polls to pressure politicians into voting on an issue, because, of course, no politician wants to be ‘out of step’ with popular opinion!

As an example, a Curia Market Research Poll conducted in New Zealand found that[12] whilst expressing support for “assisted dying”, respondents were confused about what that term ‘assisted dying’ means. The more strongly a person supports assisted dying, the more likely they are to be confused about what it includes. Of those who strongly support ‘assisted dying’, 85% thought it includes turning off life support, 79% thought it includes ‘do not resuscitate’ (no CPR requests) and 67% thought it includes the stopping of medical tests, treatments and surgeries. In all three cases however, a person would die from their underlying medical condition (of natural causes), and in any case, all three end of life choices are already available as legal options.  These can be made known by patients by way of Advance Care Planning. 

Similarly, a Comres/CARE poll in England[13] found that when people were exposed to the arguments for and against euthanasia and assisted dying and delved into some of the complexities surrounding the debate, support for assisted suicide fell significantly.  Other polls confirm that support also falls when participants are told that the AMA is opposed to assisted suicide.[14]  Polling commissioned by HOPE during the Victorian campaign found that when participants were asked whether the government should spend money on finding cures, funding palliative care or money on assisted suicide, 87% chose finding cures and palliative care as a priority over and above assisted suicide. It is clear therefore that when participants are given more information (rather than just relying on slogans) and when arguments are made that explain the complexity of the issues involved, the numbers significantly change.

The more we talk about the issue and what is actually involved in the debate around euthanasia and assisted suicide therefore, the more we will change hearts and minds.  This then brings us back to our initial discussion, about what it will take to win the cultural debate on this issue: being involved, talking about the issue, entering the fight and in the long term, and putting our resources into financing candidates and parties that will support our position.

HOPE, ACL and others will have a presence in this campaign. Our goal is to have a unified, collaborative approach that recognises the practical realities that this is not just about the issue of euthanasia. It is about influencing politics. And politics changing the culture. I strongly urge each person in this room to become activated in this campaign here in WA because every voice matters. And every voice can make a difference.

[1] https://www.firstthings.com/article/2017/12/culture-is-downstream-of-politics

[2] Ibid.

[3] Ibid.

[4] see further K. George, “Autonomy and Vulnerability at the Death Bed” [2006] UWSLawRw 6, sourced at http://classic.austlii.edu.au/au/journals/UWSLawRw/2006/6.html

[5]https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year19.pdf

[6] https://www.theaustralian.com.au/opinion/columnists/paul-kelly/legalise-euthanasia-and-compassionate-society-dies-too/news-story/edac86177f0480632d02da83a2225c6d

[7] https://organesdeconcertation.sante.belgique.be/sites/default/files/documents/8_rapport-euthanasie_2016-2017-fr.pdf

[8] https://www.theguardian.com/world/2018/mar/12/dutch-prosecutors-investigate-euthanasia-cases-sharp-rise-docter-assisted-deaths-netherlands

[9] Stephanie Packer in California was denied chemotherapy treatment by her health insurance company but offered to pay for assisted suicide https://www.washingtontimes.com/news/2016/oct/20/assisted-suicidelaw-prompts-insurance-company-den/  See also case of Barbara Wagner in Oregon – denied health cover but offered assisted dying http://abcnews.go.com/Health/story?id=5517492&page=1

[10]https://ama.com.au/system/tdf/documents/AMA%20Position%20Statement%20on%20Euthanasia%20and%20Physician%20Assisted%20Suicide%202016.pdf?file=1&type=node&id=45402

[11] J Groenewoud et al (2000) ‘Clinical Problems with the Performance of Euthanasia and Physician Assisted Suicide in the Netherlands”, New England Journal of Medicine; 2000; 342, DOI:10.1056/NEJM200002243420805, pp. 551-556, cited in Dr Stephen Parnis, “Voluntary Assisted Dying: The Promise vs the Reality”.

[12] https://www.afr.com/opinion/columnists/why-the-assisted-suicide-vote-failed-20180830-h14q1b

[13] https://www.euthanasiadebate.org.nz/poll-widespread-confusion-about-assisted-dying/

[14] http://www.comresglobal.com/wp-content/themes/comres/poll/Care_Assisted_Suicide_Poll_July_2014_(with_summary_table).pdf

[15] https://www.theaustralian.com.au/national-affairs/threat-to-malcolm-turnbull-as-euthanasia-cabinet-split-looms/news-story/9e292387c2a1ea790175e88c81f297b8

 

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