Thursday, 9 November 2017
Victoria’s Voluntary Assisted Dying Bill 2017 passed its second reading in Victoria’s Legislative Council on 3 November 2017 by a narrow margin of just 2 votes.
At least four members who voted for the Bill at second reading nonetheless raised serious concerns about the Bill and could vote against it at the third reading.
Further debate on the detail of the Bill is expected to begin on 14 November.
Several excellent speeches were given against the Bill, including those by Dr Rachel Carling-Jenkins (Australian Conservatives), Daniel Mulino (Australian Labor Party), and Bernie Finn (Liberal Party).
Mr Mulino said in part:
Lack of genuine choice for Victorians with life limiting illness in relation to access to palliative care.
Supply constraints on palliative care impeding access by Victorians who would benefit from palliative care prior to their death.
Significant regional inequalities in access to palliative care, when and where it is needed.
“Many of us in this place will have dealt with end-of-life situations that were difficult and distressing. To experience extreme physical or psychological pain or to witness the suffering of a loved one prompts many people to ask, 'Why can't we do more? Why can't we offer better options?'. Euthanasia and assisted suicide have long been proposed as a way to end suffering. I believe that while the impulse to relieve people of suffering is completely understandable, the framework proposed in this bill will cause more harm than good. This bill provides for both euthanasia, being a lethal dose directly administered by a doctor, and assisted suicide, being the provision of a lethal dose to a patient intended for self-administration. I will refer to both of these practices in my contribution.
The case for euthanasia and assisted suicide is often framed around the importance of respecting patient choice. The principal line of argument is that in a narrowly defined set of circumstances — including where consent is clearly given — it should be up to a person to decide how they wish to end their life. In particular many proponents argue that it is more compassionate to give individuals an additional option. Whether they take that option is up to them and will depend on their individual circumstances, their values, their pain level and their individual preferences. Proponents often focus on compelling examples of people for whom this choice would have made sense and for whom it should have been an option. I believe that framing the issue in terms of choice alone makes it seem deceptively simple.
One of the most widely respected and commonly cited investigations into end-of-life choices was commissioned by Mario Cuomo, the Democrat Governor of New York state. The task force he established included 25 doctors, lawyers, ethicists, philosophers and religious figures. It included practitioners and renowned academics across many disciplines. The members of the task force held a wide range of ethical viewpoints. Some found euthanasia and assisted suicide to be inherently wrong; others did not. Despite this diversity of views, they unanimously concluded that:
The media's coverage of individual cases as a way of presenting the issues to the public ... blurs the difference between a private act and public policy; between what individuals might find desirable or feasible in a particular case and what would actually occur in doctors' offices, clinics, and hospitals, if assisted suicide and euthanasia became a standard part of medical practice.
The House of Lords select committee inquiry into the Assisted Dying for the Terminally Ill Bill is another of the most globally cited reviews of this issue. That report supported this framing of the issue:
... we cannot address the issue of personal autonomy in isolation and that we must proceed to look at some of the 'real world' issues which have been raised and to try to assess the balance between greater personal choice for some people and increased potential harm for others ...
When he spoke on this issue in the federal Parliament Lindsay Tanner stressed that while he could conceive of individual instances where a strong moral case could be made in favour of euthanasia or assisted suicide, he then argued:
But there is a very different question at stake here; that is, not whether in some individual circumstances there is something morally wrong, but whether the state should legalise and indeed can safely legalise such practices. This debate should not be about one or two individual experiences, not about our own experiences, but about the broader social question. Just as the question of capital punishment cannot be determined by one or two murders, by one or two gross and appalling examples of killing, neither should our view on euthanasia be determined by our own experiences of one or two personal tragedies.
Proponents of this bill will argue that euthanasia and assisted suicide should only be available for those at their end of life, suffering unbearably and providing clear consent — not for everyone, but just for those few. In proceeding in this qualified way proponents undermine the foundational medical principle of 'Do no harm', and they do not replace it with a grand statement affirming personal autonomy and the right of every individual to choose when and how they die, but instead they seek to replace the Hippocratic oath, which has served the medical profession and the communities it has served for thousands of years, with an organising principle that could be described as 'This person would have died quite soon anyway. This intervention was justified in that he or she did not suffer'.
For some this bill might represent a crossing of the Rubicon at its shallowest point — the point at which the 'Do no harm' principle is most justifiably amended. But with this bill we would potentially take the first step on a longer journey where the values of society and the medical profession will be recast to include the right to die in an ever wider range of circumstances, and the organising principle will be personal choice, not the value of human life.
We risk creating a medical system in which, based upon underlying principles which are not clearly articulated, there will be two classes of people — those for whom euthanasia and assisted suicide are available and those for whom it is not. Why should euthanasia and assisted suicide only be available to some people? If a person suffering unbearably from a non-terminal condition requested assisted suicide, under the proposed regime they would be denied. The health system would instead be oriented towards providing support to that person to help them deal with their physical and psychological pain. In contrast, if a person suffering unbearably from a condition with a life expectancy of less than one year requested suicide, under the proposed regime they would be treated differently.
Before commenting on how arbitrary some of these eligibility criteria are, it is important to ask: why are we treating these two people differently? The strong implication is that even if you consent to ending your own life, if you fall outside the eligibility criteria society will not allow that choice. Instead society will do all it can to support you — all it can to prevent you from committing suicide. Implicit in the design of the scheme is the notion that because one person has less time to live and a lower quality of life the option of state-sanctioned suicide should be available. It will become one of the options that falls within standard medical practice for some people.
Creating different classes of people challenges in a profound way how it is that we view the worth of different people's lives. Many vulnerable people, particularly those whose quality of life is viewed as limited in the eyes of others, will find such a demarcation confronting. What does the proposed regime say about how we think about disability, for example? For decades our society has been increasingly focused on celebrating all that people with a disability can achieve — about how it can help them make their lives as fulfilling as possible. Many people with a disability will understandably worry about the practice of using quality of life as evaluated against a series of objective criteria as the measuring stick for whether the health system will focus exclusively on helping a person or, alternatively, on whether it will give them the additional option of being assisted with suicide. How will each of their lives stack up against eligibility criteria set by lawmakers they have never met?
Prominent playwright, actress and disability rights advocate Liz Carr has stated in relation to this bill:
We need an assisted living bill, not an assisted dying bill.
I'm not religious, I'm not anti-choice and yet I, along with many other disabled people who are involved in the international organisation Not Dead Yet, oppose the legalisation of assisted suicide.
Not one organisation of disabled people supports assisted suicide.
And again from Lindsay Tanner, who captured well the problem of creating different categories of people:
Why is it that, on one hand, we put so much effort and concern into telling some people, 'Don't kill yourself', and we have so much concern now about youth suicide, yet on the other hand we are now shifting into a pattern where we are going to help certain other people, in effect, to commit suicide? There is an inherent subjectivity in all of this, and that is about the quality of life for people.
Numerous studies around the world have found that a high proportion of people with a terminal condition feel that they are a burden. A study of reports from family members of patients in Oregon and Washington state who had expressed a wish for a hastened death indicated that 59 per cent of patients who did not discuss wanting assisted suicide and 94 per cent of patients who did discuss wanting assisted suicide expressed distress due to feeling like a burden on others. The study found that data from other studies and from the Oregon health division supported that the fear of being a burden is common in patients who die by lethal prescription. Evidence from the Oregon department of health annual reports indicates that over 40 per cent of people who have accessed the physician-assisted dying scheme identified being a burden on family or caregivers as an end-of-life concern. For the most recent year for which data is available, 2016, the proportion was 48.9 per cent, almost half of those surveyed.
Doctor shopping is also extremely difficult to protect against. This bill contains, in my opinion, insufficient safeguards against this phenomenon. Foley and Hendon explored a well-documented case from Oregon involving a woman in her mid-80s with metastatic breast cancer who was in a hospice program. The patient's own physician was not willing to assist in her suicide, and a second physician refused on the basis that the patient was depressed. It was only when Compassion in Dying was contacted that a doctor was found who was willing to prescribe a lethal medication. The patient was seen by a psychiatrist, but only once.
Elder abuse is another significant problem in our society and is very difficult to protect against in a bill of this nature. The extent of elder abuse is hidden to a significant extent in our society, and if it is disclosed or discovered, it is often underreported. Some studies have estimated that between 2 per cent and 10 per cent of older Australians experience some form of elder abuse in any given year.
In light of all this evidence, what do the experts tell us about the likelihood of effectiveness of safeguards? The Australian Medical Association (AMA) is opposed to euthanasia and physician-assisted suicide. Dr Michael Gannon, the national president of the AMA, recently argued:
We greatly fear there will be coercion. It is frankly commonplace for patients to tell doctors in the presence of their loved ones that they feel they are a burden on their families.
The AMA is far from alone; 107 out of 109 national peak medical bodies are opposed to doctors being involved with intentionally ending life. Last week the World Medical Association clearly stated its opposition to this bill and called on the Victorian upper house to reject the Victorian Voluntary Assisted Dying Bill 2017. It warned that vulnerable people will be placed at risk of abuse and questioned the effectiveness of the safeguards in practice.
Likewise the palliative care sector is broadly opposed to legalising euthanasia and assisted suicide. The peak body in Victoria, Palliative Care Victoria, has expressed its opposition to this particular bill. It stated that:
Palliative Care Nurses Australia is also opposed to the practice of euthanasia or assisted dying.
Last week, when commenting on the bill before us, former Prime Minister Paul Keating summarised this case strongly:
An alarming aspect of the debate is the claim that safeguards can be provided at every step to protect the vulnerable. This claim exposes the bald utopianism of the project — the advocates support a bill to authorise termination of life in the name of compassion, while at the same time claiming they can guarantee protection of the vulnerable, the depressed and the poor.
When balanced against all of these risks, how many people will this bill help? Experts in palliative care have indicated that with modern best practice pain can be managed in almost all cases. Some experts in palliative care have estimated that pain management is difficult in less than 1 per cent of cases and that even in these cases there are treatment options.
Associate Professor at Alfred Health Peter Hunter stated in evidence to the upper house committee that:
We do know that in almost all patients, if we do a proper assessment and understand that the drugs are available, we can alleviate pain and we can do a good job of that. If anyone dies in pain, that is an absolute travesty because there is capacity to really manage that effectively in this day and age.
If this bill passes, it will no longer be possible for the terminally ill to simply accept that their role is to receive the care that is provided to them for as long as it is necessary. No longer will the matter of them being a burden to their family in a physical, social or economic sense be merely an unchangeable consequence of their illness. If this bill passes, they will have a choice, their family will know they have a choice and their carers will know they have a choice. Even if we lived in a utopia where relatives and carers always sought only the best for the patient at all times, that choice could be a burden in many instances. But we do not live in a utopia. Unfortunately there is abuse of the vulnerable in our society, and this bill while possibly helping some will also unfortunately expose many others to unscrupulous behaviour. This is not a bill which adds without taking away.
This bill is well-intentioned, but unfortunately I believe it is fatally flawed with inadequate protections for the vulnerable. I believe that, if it passes, our society will be worse off. I urge that the house reject this bill.”
There are many excellent insights in this speech and those of Dr Carling-Jenkins and Mr Finn.
I urge you to read these speeches carefully as you consider your position on New South Wales’s Voluntary Assisted Dying Bill 2017.
Tuesday, 7 November 2017
Victoria’s Voluntary Assisted Dying Bill 2017 passed its second reading in Victoria’s Legislative Council on 3 November 2017 by a narrow margin of just 2 votes.
At least four members who voted for the Bill at second reading nonetheless raised serious concerns about the Bill and could vote against at the third reading.
Further debate on the detail of the Bill is expected to begin on 16 November.
Several excellent speeches were given against the Bill, including those by Dr Rachel Carling-Jenkins (Australian Conservatives), Daniel Mulino (Australian Labor Party), and Bernie Finn (Liberal Party).
Dr Carling-Jenkins said in part:
"Martin Luther King Jr once said this:
"Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly."
We are debating a bill in this chamber today which was passed by the other place last sitting week after intense and exhaustive debate — or perhaps I should say exhausting debate, because there were very few answers given during the course of that time. It is a bill which represents injustice. If passed here in this place, we will be undermining justice everywhere, so to debate this bill is a grave responsibility. What we are debating here today will affect us all directly or indirectly. We are debating a regime which could affect us personally near the end of our very own lives. This is the destiny of this Parliament, and I believe that we will be judged harshly by our future generations if we allow this bill to pass. So I stand today to speak out against the Voluntary Assisted Dying Bill 2017 introduced by the government.
This is the most misnamed bill to ever come into our Parliament during this term. Why do we not simply call it what it is? This is the introduction of an assisted suicide regime and a euthanasia regime. The ability for these regimes to be completely voluntary is debatable at best, deceptive at worst. I think it is very important to make this point clearly to ensure that this distinction is understood. The Minister for Health, who introduced this bill, has time and time again claimed philosophical differences in the way this bill is being described; however, definitions are not philosophical, they are fact, and the fact is that this bill introduces two regimes — regimes which on 27 October even the World Medical Association called on this house, this place, to reject.
The first regime is assisted suicide, where state permits signed by the secretary of the department or her appointee will be issued to people diagnosed with 12 or less months to live, effectively accompanied by poison in a locked box, to give people the opportunity to kill themselves at home, alone, without any medical supervision in case something goes horribly, horribly wrong. The second regime is euthanasia, or physician-assisted suicide, where the doctor administers the medication, most likely through lethal injection, which is eerily similar to forms of capital punishment in the US. The only requirement for opting for euthanasia over self-administration is for a single, solitary doctor, possibly with a vested financial interest in the prospect, to certify that the person is physically incapable of self-administering or digesting the poison. What does this mean? Someone with a gag reflex who cannot swallow? Being physically unable to open the locked box on one's own? Or simply being debilitatingly scared of killing yourself so that your hands shake too much? This is not yet defined for this proposed regime.
Rather than being rare, it is likely that doctor-assisted suicide will become the norm in Victoria rather than self-administered suicide. More than 95 per cent of people in jurisdictions overseas prefer to take up doctor assistance when it is offered rather than self-administration. I do not know about you, Acting President, but this is not the state I wish to grow old in, this is not the state I wish to inflict on future generations and this is not the state I wish on our current elderly population — a state which puts a use-by date on the lives of people; a state which devalues disability in such a way that it will allow reasons such as incontinence, which is part of the everyday life of many people with disabilities, as a justification to issue a permit for someone to die; a state which thinks it is okay to encourage someone to opt for euthanasia rather than receive mental health assistance or even an assessment for depression; a state where, since we are going down the path of the Netherlands, we could see one out of every 20 deaths being death by doctor. This would equate to 2000 deaths per year in Victoria. I repeat — 2000 deaths.
I will vote against this bill because I believe it is my job, and the job of everyone in this chamber today, to protect the lives of our constituents and to prevent their unnecessary and untimely deaths. We do this when we discuss the road toll and take measures to prevent deaths on our roads, we do this when we talk about protecting our community from psychopaths who should not be receiving bail and we do this when we advocate for suicide prevention strategies — so we should also do this by rejecting this bill. I will not be voting for this bill, because it steps far outside our responsibility to protect and into a role of state-sanctioned suicide, I will not be voting for this bill because of its broad and far-reaching consequences and I will not be voting for this bill because it will undermine the fundamental relationship between a doctor and his or her patient. As nearly 400 health professionals have said in their statement 'Health professionals say no':
We believe that crossing the line to intentionally assist a person to suicide would fundamentally weaken the doctor-patient relationship, which is based on trust and respect. The power of the clinician-patient relationship cannot be overestimated.
This sentiment was reiterated by the World Medical Association, which in expressing grave concern about this very bill, stated that:
... it will create a situation of direct conflict with physicians' ethical obligations to patients and will harm the 'ethical tone' of the profession.
They also warned that vulnerable people would be at risk should this bill passed. Out of 109 medical associations across the world, 107 have come out against assisted suicide and euthanasia, yet this government feels as though it knows better.
We often hear about the jurisdictions across the world which have implemented similar regimes to the ones we are debating today, but a lot less attention is given to the repeated rejection of similar legislation. In the US only five out of 50 states have implemented one of these regimes, for example. In the UK House of Commons in 2015 similar legislation was defeated by a vote of 318 to 118. In that same year the Scottish Parliament voted against the implementation of a similar regime by a vote of 82 to 36. These are overwhelming votes. This goes to the gravity of this bill.
This bill is not a progressive move on the part of the government. In fact I believe it is the height of arrogance to believe that they know better than medical associations and parliaments across the world.
As an expert in disability with 20 years experience in the field, a PhD in disability rights and lived experience, I feel that I must address the disability perspective of this bill. This bill sends a dark, discouraging, even disastrous message to many people with disabilities. This message is that your life — our lives — are not worth living, that we are better off dead than that kind of disabled and that the way to solve society's problems is to once again put us out of sight and out of mind, an archaic message that we have been fighting against for decades through the disability rights movement. This bill sets our movement back.
All we must do to qualify for this bill is to be in suffering. Yet this bill lacks any real definition of suffering, which is personal, subjective and above all situational. In Oregon, for example, some people who have taken up suicide have identified their suffering as coming from the financial cost of their treatment. Randy Stroup and Barbara Wagner were both told by their health insurers that the cancer treatment proposed for them by their doctors was not covered, but assisted suicide drugs were. Another kind of suffering mentioned by half of all people in Oregon accessing assisted suicide is their concern about being a burden to family, friends or caregivers. This is a very disturbing reason to choose to die. And I need to say here that people with disabilities are often led to feel guilty about the burden of their disability on others. This is a common reason to take up the offer of assisted suicide. Does anyone else see the warning signs here?
Others cite a decreasing ability to participate in activities that make life enjoyable, like, 'I can't play golf anymore' or 'I can't cook for my family anymore', and the loss of control of bodily functions such as incontinence or needing assistance to eat. These can all be part of the lived experience for people with disabilities. The late Stella Young, the comedian and disability activist who was a fierce opponent of euthanasia and assisted suicide laws, said this:
"Before we can talk about death with dignity, we need to ensure that all people, regardless of age or disability, can live with dignity. We're not there yet."
I agree with Stella Young. We are not yet there yet. In fact we are a long way from there.
Safeguards tend to indicate protections. However, there are very few protections under this bill. There is no protection for a frail or elderly person who is being made to feel burdened by their inheritance-impatient children. No family history or will checks need to be made prior to issuing a suicide permit. There is no protection for a person who is unable to speak, who is likely to have their gestures misinterpreted as there is no independent interpreter required to ensure that far from gesturing a desire to die, she may be gesturing that her care is inadequate and she is being abused and needs help.
There is no protection from predatory doctors, who will set up death clinics, with hostels attached, to enable them to help vulnerable people from interstate to establish residency quickly and efficiently so they can access our suicide and euthanasia regimes. And there is no protection from doctor shopping. No matter how many doctors assess a person as ineligible, a person can keep looking for two doctors who will assess them as eligible. There is no protection from death clinic doctors with a vested financial interest in the regime or with an ideological view that suicide is nearly always a rational choice to assess someone they have never met before as being free from coercion. And there is no protection from the beneficiary of the will being a witness at the time of the administration of a lethal dose by a doctor. I could keep going, but I think you have the idea.
The main argument being used in support of this bill is that there is a small group of people who, regardless of the best that palliative care can offer, still suffer from unrelievable physical pain or other physical symptoms. The only way to relieve the pain is said to be to kill them. This claim ignores the appalling situation that according to a letter dated 20 October 2017 from Dr Judi Greaves, chair of the Palliative Care Victoria Board, at least 10 000 Victorians die each year missing out on access to needed palliative care. The letter rightly warns us not to make assisted suicide a default option due to poor access to quality care. The advice I have received from Palliative Care Victoria is that there is always something that can be done to deal with pain and other physical symptoms at the end of life, including in rare cases using palliative sedation.
The bill uses the phrase 'suffering that cannot be relieved in a manner that the person considers tolerable', yet there is no definition of 'suffering' in the bill. There are no processes for assessing the nature and level of the suffering, there is no requirement to refer the person to a specialist palliative care assessment to ensure that they are getting access to gold standard palliative care and there is no requirement for the assessing doctor even to know what the best practice in palliative care is.
Some people will be helped to commit suicide or killed by euthanasia who could have had their pain or other physical symptoms relieved with the proper help. They may be one of the 10 000 Victorians dying each year now without access to the best palliative care in Victoria simply due to the lack of funding from the same government that has promoted this bill.
This bill is widely recognised as a first step towards institutionalising a retirement age or, as Philip Nitschke proposed recently, everyone aged over 70 being given a permit to commit suicide by lethal drugs in Australia. It is a first step towards extending the regime to access by a broader group of people, described by Ms Patten to the Age as 'anyone who wanted to die'. It is a first step towards extending the regime to people with an advanced illness even if not terminal, which was a feature of Ms Hartland's attempt to legalise euthanasia 10 years ago in his place. It is a first step towards devaluing the role of palliative care and ensuring that palliative care will never be available to all.
I should note that some proponents of assisted suicide and euthanasia acknowledge that some people will die who should not, but they do not care. In fact, to them, this is simply collateral damage. British neurosurgeon and advocate for assisted suicide Henry Marsh has argued that it does not matter, and I quote here:
"... if a few grannies get bullied into ... assisted suicide — isn't that the price worth paying for all the people who could die with dignity?"
Victorians who are genuinely suffering at the end of life need access to gold standard palliative care, a standard I have illustrated is simply not yet available to all. Victorians contemplating suicide for any reason need to be assisted to see that there is always a better way. They do not need doctors agreeing that they are better off dead, and they do not need the government authorising them to die alone with an experimental cocktail of lethal drugs.”
There are many excellent insights in this speech and those of Mr Mulino and Mr Finn.
I urge you to read these speeches carefully as you consider your position on New South Wales’s Voluntary Assisted Dying Bill 2017.
Thursday, 2 November 2017
The key to the Voluntary Assisted Dying Bill 2017 is causing the death of a person by the self-administration or medical practitioner administration of an “authorised substance”.
An “authorised substance” is defined in Clause 6 of the Bill to be “a substance that is declared by the regulations to be an authorised substance for the purposes of this Act or that belongs to a class of substances so declared.”
So we have no idea what deadly substance or substances will be used to cause the death of people in New South Wales if this Bill is passed.
Various substances have been used over the last eighty years to cause death in humans.
In 1939 psychiatrist Paul Nitsche, head of the asylums in Saxony, developed the so-called “Saxon special path”, which pioneered the use of luminal to kill psychiatric patients by injection. It was found (by research!) that starving the patients first meant that a lower dose of luminal was required.
Luminal, under its better known name phenobarbital, was used, mostly in a cocktail with other drugs, in 107 (44.6%) of suicides carried out in 2016 under Washington State’s Death With Dignity Act and in 39 (29.3%) of suicides carried out in 2016 under Oregon’s Death With Dignity Act.
This lethal cocktail used in Washington and Oregon was made up of phenobarbital, chloral hydrate and morphine sulphate.
Kaiser Health News reported in December 2016 on problems with this experimental cocktail:
“But the combination turned out to be too harsh, said Dr. Robert Wood, a volunteer medical adviser for End of Life Washington.
“The chloral hydrate mixture was too caustic for some folks and our volunteers didn’t like using it,” because some patients became distressed, Wood said.
Most doses of lethal medication are bitter, often requiring patients to take anti-nausea drugs. But the new mixture was not only bitter but also caused a burning sensation in the mouths of some patients, said Glennon. “There was some profound burning,” she said. “We didn’t like working with it. As a volunteer, you want to reassure people. We’re about a peaceful, dignified death.”
So back to the experiments!
The next cocktail used by suicide doctors was a three drug mixture that includes diazepam, digoxin, and morphine.
However, a new problem emerged, as reported in the Seattle Times in March 2017:
“[Twenty percent] of the cases were three hours or more before death, which we think is too long,” said Robert Wood, a retired HIV/AIDS researcher who volunteers with the advocacy group End of Life Washington, in an email. “The longest was 31 hours, the next longest 29 hours, the third longest 16 hours and some eight hours in length.”
Patients and families are told to expect sleep within 10 minutes and death within four hours. When it takes far longer, family members get worried, even distressed, said Dr. Carol Parrot, a retired anesthesiologist who has prescribed drugs for dozens of aid-in-dying patients in Washington.
Suicide doctors are now experimenting with a four drug cocktail including diazepam, digoxin, morphine and propranolol.
This experimentation with lethal cocktails of drugs on people in Washington and Oregon will be extended to New South Wales if the Bill passes.
The Oregon data shows that in 2016, for those for whom information is available, some 11.1% of people ingesting lethal drugs regurgitated them. Some six people in Oregon have regained consciousness after initially going into a coma, one of them after 3 days and 16 hours.
The interval from ingestion of lethal drugs to unconsciousness has been as long as one hour while the interval from ingestion to death been as long as 4 days and 8 hours.
The Washington data shows that in 2016 one person took 11 hours to lose consciousness after ingesting the lethal dose and one person took 22 hours to die after ingesting the lethal dose. Seven people regurgitated the lethal medication. In 2014 one person suffered seizures after ingesting the lethal medication.
The Voluntary Assisted Dying Bill 2017 is being marketed to MPs by its proponents as providing people in New South Wales with a new "option for terminally ill patients" to end their lives on “their own terms”.
Instead the Bill would abandon suicidal people to be the living laboratory subjects of experiments with lethal cocktails.
The suicide/euthanasia Bill should be rejected and more funding and effort put in palliative care and suicide prevention for all people in New South Wales.
Tuesday, 31 October 2017
Margaret Dore, an experienced attorney specialising in elder law in Washington State, where assisted suicide is legal, has urged Victorian MPs to “to reject the proposed bill seeking to legalize assisted suicide and euthanasia.”
Her analysis of Victoria’s Voluntary Assisted Dying Bill 2017, which would legalise euthanasia as well as assisted suicide can be read in full here.
While her detailed analysis is based on the Victorian bill, her warnings of the dangers to the elderly of legalising assisted suicide and euthanasia apply equally to New South Wales.
Dore points out that in “Oregon and Washington State, most people who die under their [assisted suicide] laws are elders, aged 65 or older. This demographic is already an especially at risk group for abuse and financial exploitation. This is true in both the US and Australia.
Elder abuse and exploitation perpetrators are often family members. They typically start out with small crimes, such as stealing jewelry and blank checks, before moving on to larger items or to coercing victims to sign over deeds to their homes, to change their wills or to liquidate their assets. Amy Mix, an elder law attorney in the US, explains why older people are especially vulnerable:
The elderly are at an at-risk group for a lot of reasons, including, but not limited to diminished capacity, isolation from family and other caregivers, lack of sophistication when it comes to purchasing property, financing, or using computers. Defendants are family members, lots are friends, often people who befriend a senior through church.
In some cases, elder abuse and financial exploitation are fatal. Consider People v. Stuart in which an adult child killed her mother with a pillow, allowing the child to inherit. The Court observed:
Financial considerations [are] an all too common motivation for killing someone.”
Claims are often made that assisted suicide and euthanasia can be safe because doctors, psychiatrists or psychologists have to certify that they are satisfied that the person requesting assisted suicide or euthanasia is acting voluntarily and without coercion.
Dore rightly observes that this is not a real safeguard because:
In both Australia and the US, victims do not report abuse. For example, in Victoria, it is estimated that there are more than 20,000 unreported cases of abuse, neglect and exploitation each year and approximately 100,000 in Australia nationwide. Meanwhile, in the US, it’s estimated that only 1 in 14 cases ever comes to the attention of the authorities. Reasons for the lack of reporting include:
Many who suffer from abuse . . . don’t want to report their own child as an abuser.
Dore notes that as with the assisted suicide laws in Oregon and Washington State:
The bill allows a patient to administer the lethal dose in private, without a witness or doctor present. In addition, the drugs typically used are water and alcohol soluble, such that they can be injected into a sleeping or restrained person without consent. Alex Schadenberg, Executive Director for the Euthanasia Prevention Coalition, puts it this way:
With assisted suicide laws in Washington and Oregon [and with the proposed bill], perpetrators can . . . take a “legal” route, by getting an elder to sign a lethal dose request. Once the prescription is filled, there is no supervision over administration. Even if a patient struggled, who would know?”
I encourage you to read Margaret Dore’s full analysis and consider it carefully. She approaches the proposals to legalise assisted suicide and euthanasia with the eye of a lawyer who is experienced in helping elderly people who are being abused by family or financial predators. She demonstrates that the alleged safeguards in the Bill are illusory and the choice the Bill purports to give people is an illusion.
Elderly members of the community in New South Wales deserve a better deal than the assisted suicide and euthanasia Bill offers.
Thursday, 26 October 2017
The Voluntary Assisted Dying Bill 2017 which would legalise assisted suicide (and euthanasia by doctors and nurses) includes a compulsory referral to a psychiatrist or psychologist to confirm that “(a) the patient has decision-making capacity in relation to the request for assistance, and (b) the patient’s decision to request the assistance has been made freely, voluntarily and after due consideration.” (Clause 20)
A similar provision was included in the Northern Territory’s Rights of the Terminally Ill Act 1995 requiring that before a doctor administered euthanasia the doctor must be satisfied that “A qualified psychiatrist has examined the patient and confirms that the patient is not suffering from a treatable clinical depression in respect of the illness.”
It is worth considering how well that screening provision worked.
The Rights of the Terminally Ill Act 1995 (the ROTI Act) was in operation in the Northern Territory from 1 July 1996 until it was suppressed by the Commonwealth’s Euthanasia Laws Act 1997 on 27 March 1997.
During the nine-month period in which the ROTI Act was in effect and under its provisions, four people were assisted to terminate their lives by Dr Philip Nitschke.
Case studies on these four deaths have been published. The principal author of this paper is Professor David Kissane, who is a consultant psychiatrist and professor of palliative medicine. Philip Nitschke is a co-author of the paper.
The case studies examine how the conditions required by the ROTI Act were met. Cases numbered 3, 4, 5 and 6 in this paper refer to those cases which ended with the person’s life being terminated with the assistance of Dr Philip Nitschke.
Kissane noted that “fatigue, frailty, depression and other symptoms” – not pain – were the prominent concerns of those who received euthanasia. He observed that “palliative care facilities were underdeveloped in the Northern Territory, and patients in our study needed palliative care… There is a need to respond creatively to social isolation, and to treat actively all symptoms with early and skilled palliative care.”
From the case histories, it is apparent that cases 3 and 4 each had depressive symptoms.
In case 3, the patient had received “counselling and anti-depressant medication for several years”. He spoke of feeling sometimes so suicidal that “if he had a gun he would have used it”. He had outbursts in which he would “yell and scream, as intolerant as hell” and he “wept frequently”.
Neither the patient’s adult sons nor the members of the community palliative care team who were caring for him were told he was being assessed for euthanasia. “A psychiatrist from another state certified that no treatable clinical depression was present.”
In case 4, “the psychiatrist noted that the patient showed reduced reactivity to her surroundings, lowered mood, hopelessness, resignation about her future, and a desire to die. He judged her depression consistent with her medical condition, adding that side-effects of her antidepressant medication, dozepin, may limit further increase in dose.”
Kissane comments that “case 4 was receiving treatment for depression, but no consideration was given to the efficacy of dose, change of medication, or psychotherapeutic management.” While Dr Nitschke “judged this patient as unlikely to respond to further treatment”, Kissane comments that “nonetheless, continued psychiatric care seemed warranted – a psychiatrist can have an active therapeutic role in ameliorating suffering rather than being used only as a gatekeeper to euthanasia”.
Further concerns are raised by the report on case 5. Dr Nitschke reported that “on this occasion the psychiatrist phoned within 20 min, saying that this case was straightforward”. This assessment took place on the day on which euthanasia was planned. This case involved an elderly, unmarried man who had migrated from England and had no relatives in Australia. Dr Nitschke recalled “his sadness over the man’s loneliness and isolation as he administered euthanasia”. Dr Nitschke has since revealed in testimony to a Senate committee, that he personally paid for this psychiatric consultation and that it in fact took less than 20 minutes.
Dr David Kissane, comments on the issue of demoralisation:
Review of these patients’ stories highlighted for me the importance of demoralization as a significant mental state influencing the choices these patients made. They described the pointlessness of their lives, a loss of any worthwhile hope and meaning.
Their thoughts followed a typical pattern of thinking that appeared to be based on pessimism, sometimes exaggeration of their circumstances, all-or-nothing thinking in which only extremes could be thought about, negative self-labelling and they perceived themselves to be trapped in this predicament. Often socially isolated, their hopelessness led to a desire to die, sometimes as a harbinger of depression, but not always with development of a clinical depressive disorder. It is likely that the mental state of demoralization influenced their judgement, narrowing their perspective of available options and choices. Furthermore, demoralized patients may not make a truly informed decision in giving medical consent.
Demoralization syndrome … is an important diagnosis to be made and actively treated during advanced cancer. It is recognised by the core phenomenology of hopelessness or meaninglessness about life. The prognostic language within oncology that designates ‘there is no cure’ is one potential cause of demoralization in these patients, a cause that can be avoided by more sensitive medical communication with the seriously ill. While truth telling is needed, hope must also be sustained so that life may be lived out as fully as possible. Patients with advanced cancer can be guided to focus on ‘being’ rather than ‘doing’, savouring the experiential moment of the present, so that purpose and meaning are preserved through inherent regard for the dignity of the person. Active treatment of a demoralized state by hospice services would involve counselling and a range of complementary therapies, use of community volunteers and family supports, all designed to counter isolation and restore meaning.
The people of New South Wales deserve real help at the end of life, not a bottle of poison or a lethal jab from a doctor or nurse.
Tuesday, 24 October 2017
After a marathon all night sitting in which the proponents of assisted suicide and euthanasia rejected out of hand each well-thought amendment designed to give a little more protection to vulnerable people in the community, Victoria’s Voluntary Assisted Dying Bill passed the Legislative Assembly by 47 votes to 37. It now heads to the Legislative Council where the vote is expected to be much closer and the Bill may yet be defeated.
On the eve of the debate former Prime Minister Paul Keating issued a statement which applies just as much to the Voluntary Assisted Dying Bill before the New South Wales Legislative Council.
Mr Keating warned of the pressure legalising assisted suicide and euthanasia would put on people to choose to die prematurely to relieve their family of the burden of care:
[I]t is "commonplace" for patients to tell doctors in front of their loved ones that they have no wish to be a burden on families.
Once this bill is passed the expectations of patients and families will change. The culture of dying, despite certain and intense resistance, will gradually permeate into our medical, health, social and institutional arrangements. It stands for everything a truly civil society should stand against. A change of this kind will affect our entire community not just a small number of dying patients. It is fatuous to assert that patients will not feel under pressure once this bill becomes law to nominate themselves for termination.
The former prime minister dismissed as hollow utopianism the claim that assisted suicide laws can have rigorous safeguards:
An alarming aspect of the debate is the claim that safeguards can be provided at every step to protect the vulnerable. This claim exposes the bald utopianism of the project – the advocates support a bill to authorise termination of life in the name of compassion, while at the same time claiming they can guarantee protection of the vulnerable, the depressed and the poor.
No law and no process can achieve that objective. This is the point. If there are doctors prepared to bend the rules now, there will be doctors prepared to bend the rules under the new system. Beyond that, once termination of life is authorised the threshold is crossed.
Mr Keating also stressed the dangerous pro-suicide message an assisted suicide bill would send to the community, including vulnerable young people, explaining that assisted bills send:
the wrong message to people contemplating suicide and undermines suicide prevention efforts. How could this not be the case? Suicide is the leading cause of death among people aged 15-44 and the second leading cause of death among people aged 45-54. International studies offer no support for the view that legalising euthanasia is associated with a decrease in non-assisted suicides.
He warned legislators not to dismiss opposition as religious. Instead what is at stake is:
the civilisational ethic that should be at the heart of our secular society.
The concerns I express are shared by people of any religion or no religion. In public life it is the principles that matter. They define the norms and values of a society and in this case the principles concern our view of human life itself. It is a mistake for legislators to act on the deeply held emotional concerns of many when that involves crossing a threshold that will affect the entire society in perpetuity.
I urge you, regardless of your party affiliation, to heed this very insightful warning from former Prime Minister Paul Keating.
Thursday, 19 October 2017
As debate on Victoria’s version of an assisted suicide and euthanasia Bill is underway palliative care and other health professionals are warning MPs both there and here in New South Wales that any scheme to legalise assisted suicide and euthanasia is unnecessary and dangerous.
In a letter co-signed by 105 Australian palliative care professionals the false claims being made by Andrew Denton and others that palliative care doctors either cannot or will not relieve suffering are strongly rebutted:
Current Australian data indicates that no more than 2 in every 100 Palliative Care patients would be in moderate or severe pain at the end of life. In these unusual cases where when all other methods of palliation for pain and other symptoms is inadequate, and if the patient agrees, palliative sedation therapy is available to provide adequate relief of suffering.
This is not just a ‘pharmacological oblivion’ as some have claimed. It is the careful management of pain and other severe symptoms through individualised medication plans at therapeutically recognised doses, and with dignified personal care, delivered by experienced doctors, nurses and allied health workers.
Family and carers are also supported with emphasis on a holistic approach.
No one is abandoned and everyone can be assisted or supported in some way.
This message is reinforced in a letter now signed by over 400 health professionals :
We endorse the views of the World Medical Association that physician assisted suicide and euthanasia are unethical, even if made legal. We endorse the Australian Medical Association position that "doctors should not be involved in interventions that have as their primary intention the ending of a person’s life."
We also endorse the World Health Organisation definition of Palliative Care, which has been re-affirmed by the Australia & New Zealand Society of Palliative Medicine, that Palliative Care aims to deliver impeccable holistic and person centred care without the aim of foreshortening life.
We are committed to the concept of death with dignity and comfort, including the provision of effective pain relief and excellence in Palliative Care.
We uphold the right of a patient to decline treatment.
We know that the provision of pain relief, even if it may unintentionally hasten death of the patient, is ethical and legal. Equally the withdrawal or withholding of futile treatment in favour of Palliative Care is also ethical and legal.
We believe that crossing the line to intentionally assist a person to suicide would fundamentally weaken the doctor-patient relationship, which is based on trust and respect. The power of the clinician/patient relationship cannot be over-estimated.
We are especially concerned with protecting vulnerable people who can feel they have become a burden to others, and are committed to supporting those who find their own life situations a heavy burden. We believe such laws would undermine the public perception of the dignity and value of human life in all its different stages and conditions. Government focus should be on the compassionate and equitable provision of Social Services, Health Care and Palliative Care.
I urge you to listen to the wise counsel from these professionals who have dedicated their lives to the service of the sick and dying.
Tuesday, 17 October 2017
As you consider the Voluntary Euthanasia Bill 2017, please ask yourself whether it will pose an unacceptable risk to vulnerable people in the community, such as those living with a disability.
Candice Lewis is a 25 year old Canadian woman who happens to have cerebral palsy.
In September 2016, Candice went to the emergency room at Charles S. Curtis Memorial Hospital in St. Anthony after having seizures.
Dr Aaron Heroux told her she was very sick and likely to die soon. He offered her assisted suicide.
The doctor also proposed assisted suicide for Candice to her mother Sheila Elson.
This offer was repeated despite both Candice and her mother making it clear that this was not an option Candice would consider. Dr Heroux told Sheila she was being selfish by not encouraging her daughter to choose assisted suicide.
Candice describes how bad it made her feel that a doctor was offering her assisted suicide.
More than twelve months later, Candice has recovered well and her health has much improved.
Candice hasn’t been having any seizures, is now able to feed herself, walk with assistance, and use her iPad. She is more alert, energetic and communicative.
She was able to walk down the aisle as a bridesmaid at her sister’s wedding in August 2017. She is doing what she loves most: painting and being with her family.
Candice and her mother Sheila have been interviewed by Kevin Dunn, who is producing a film on euthanasia and assisted suicide called Fatal Flaws. The film of the interview can be viewed here.
There are three key take home lessons from Candice’s experience:
Doctors can get the prognosis wrong. Candice was told she was dying, but is flourishing twelve months later. A wrong prognosis can lead to assisted suicide or euthanasia. A life can be thrown away needlessly;
Under the Voluntary Euthanasia Bill 2017 Candice would have met the eligibility criterion of less than 12 months to live.
People with a disability already suffer discrimination in health care. When assisted suicide and euthanasia are legal, people with a disability are more at risk of being offered death as a solution because doctors and others consider that they would be better off dead;
Under the Voluntary Euthanasia Bill 2017 people with a disability can be assisted to commit suicide or killed by euthanasia if doctors assess them at meeting the eligibility criteria.
Once doctors are authorised by the law to provide assisted suicide and euthanasia some of them will feel empowered to see it as a solution for anyone they think would be better off dead. This damages the relationship of trust between patients and doctors.
Legalising assisted suicide and euthanasia puts people at risk of being wrongfully killed due to errors in prognosis or discrimination. It subverts the nature of the medical profession and destroys trust in doctors.
It is not a path New South Wales should follow.
Thursday, 12 October 2017
The High Court of Justice in England has decisively rejected the argument for legalising assisted suicide based on autonomy.
The High Court found that it would not be possible to legalise assisted suicide without leaving vulnerable people at risk of being wrongly helped to commit suicide.
This decision is of profound relevance as you consider the Voluntary Assisted Dying Bill 2017 (VAD Bill).
Although it is claimed that this Bill has more safeguards than any other assisted suicide law proposed anywhere in the world, this is simply not true.
The latest Assisted Dying Bill introduced into the House of Lords on 9 Jun 2016 required that, before a person could be given assistance to end his or her life, the High Court must have confirmed that “it is satisfied that the person has a voluntary, clear, settled and informed wish to end his or her own life”.
The VAD Bill leaves this assessment entirely in the hands of a psychiatrist or psychologist perhaps in a single brief meeting.
The High Court stated (para 100):
The involvement of the High Court to check capacity and absence of pressure or duress does not meet the real gravamen of the case regarding protection of the weak and vulnerable. Persons with serious debilitating terminal illnesses may be prone to feelings of despair and low self-esteem and consider themselves a burden to others, which make them wish for death. They may be isolated and lonely, particularly if they are old, and that may reinforce such feelings and undermine their resilience. All this may be true while they retain full legal capacity and are not subjected to improper pressure by others.
Proponents of the assisted suicide Bill have been far too ready to dismiss the concern that vulnerable people will be at risk.
The High Court astutely identifies that the risk to the vulnerable cannot be avoided simply by a decision making capacity test. Nor is it enough to rule out the more obvious forms of overt coercion. The real concern is that by making assisted suicide an option the lonely, frail, elderly, disabled or depressed may choose death because they feel like a burden on others.
The Court cited the data from Oregon as evidence that its concern about people choosing assisted suicide because they felt like a burden was not fanciful but a real danger:
Data from surveys in Oregon of people seeking physician assisted suicide showed that of those responding 48.9% cited “Burden on family, friends/caregivers” as one reason for their decision. The risk that individuals will feel such pressures is clearly a real one. (para 104)
The Court also was alert to the danger of pressure being applied later in the process, perhaps after the lethal medication was made available, on a person to proceed despite doubts or a more positive outlook:
Also, the court would look at the position at a particular point in time and would not pick up cases where the individual concerned had doubts or their mood changed later on, but might come under pressure to proceed despite this. (para 104)
Under the VAD Bill, once the lethal substance is provided there is no subsequent check on a person’s decision making capacity or freedom from coercion or undue influence. There is a very real danger that a person who wants to change their mind about taking the lethal substance may feel pressure from others to go ahead anyway.
Supporters of assisted suicide can list any number of alleged safeguards in the Bill. None of these address the central issue identified by the High Court as a good public policy reason to maintain a comprehensive ban on assisted suicide.
As British neurosurgeon and advocate for assisted suicide Henry Marsh has argued, it does not matter “if a few grannies get bullied into [assisted suicide], isn't that the price worth paying for all the people who could die with dignity?”
Do you think it is a price worth paying?
The High Court of Justice has decided it is too high a price to pay.
I hope you will too.
Tuesday, 10 October 2017
It is extraordinary that Andrew Denton can keep a straight face when he claims that the Netherlands is a model of transparency in euthanasia practice that can be confidently taken as evidence that legalising euthanasia or assisted suicide can be done safely – but then he is a comedian by profession.
I found nothing ‘slippery’ or underhanded about what they were doing. The systems in Belgium and the Netherlands are based on full and transparent disclosure – where every case is reported and reviewed by peer committees, aligned with the coroner’s office, and with the power to report doctors to state prosecutors for any breaches.
The latest detailed data published by Statistics Netherlands shows that nearly 1 in 4 (23.96%) of cases of explicit killing by euthanasia or assisted suicide are not reported, although reporting is legally required.
Legalising euthanasia and assisted suicide empowers doctors to kill their patients.
In 2015 in the Netherlands some 431 patients were killed by doctors without there being any explicit request from the patient and no legal basis for their deadly action. None of these cases has been investigated.
Altogether in 2015 there were 7,254 deaths caused intentionally by lethal medication – 6,672 deaths by euthanasia with a request; 431 deaths by euthanasia with no explicit request; and 150 deaths by assisted suicide.
This represents nearly one in twenty (4.93%) of all deaths in the Netherlands.
Most tellingly, more than one in ten (10.5%) of all deaths (other than sudden and expected deaths) of 17-65 year olds in the Netherlands are caused intentionally by euthanasia or assisted suicide.
These figures are relevant for New South Wales because clause 5 of the Voluntary Assisted Dying Bill 2017 includes provision for euthanasia, which is the direct administration by a doctor of a lethal dose to a person.
The only additional requirement to allow a doctor to provide euthanasia rather than assisted suicide is for the person to be “physically incapable of self-administering a lethal dose”.
This condition is not subject to any confirmation or investigation by a third party before euthanasia is performed.
Physically incapable of self-administering could include having a shaky hand or poor eyesight or being incapable of digesting the lethal dose due to a dry mouth making swallowing difficult or a tendency to regurgitate, which is a common complication of assisted suicide.
Both assisted suicide and euthanasia are available in the Netherlands. In 2015 some 97.8 % of people opted for euthanasia over assisted suicide.
If euthanasia becomes more popular in New South Wales than assisted suicide, then the numbers choosing nice, safe doctor administered death may over time creep closer to those in the Netherlands.
Clause 5 of the Voluntary Assisted Dying Bill 2017 also includes a world first provision for nurses to directly kill patients by euthanasia if authorised to do so by a doctor.
Even if assisted suicide was to be more common than euthanasia there are still many dangers associated with it as demonstrated in the latest data from the State of Washington, released last month.
This latest data confirms that once assisted suicide is legalised use of it increases from year to year, seemingly without limit.
Deaths from lethal drugs prescribed under the Act have nearly quadrupled (376%) from 51 in 2010 to 192 in 2016, increasing by 13.6% from 2015 to 2016 alone.
Some 59% of those for whom a prescription for lethal drugs was provided did not cite any concern about pain control as a reason for asking for the prescription.
However, 87% cited concerns about loss of autonomy and 51% cited concerns about being a burden on family, friends or caregivers.
Significantly, 8% cited concerns about the financial implications of treatment.
Only 5% of those given a lethal prescription were referred to a psychiatrist or psychological for evaluation.
In some cases the prescribing doctor knew the patient for less than a week before writing the prescription, and in more than half the cases (53%) the doctor knew the patient for less than 25 weeks.
In 2016 one person took 11 hours to lose consciousness after ingesting the lethal dose and one person took 22 hours to die after ingesting the lethal dose.
In 2016 in some 4% of cases the lethal dose was regurgitated, double the rate in the previous year.
This may be related to the use of new experimental cocktails of lethal drugs being used since the price of the previously used drugs, secobarbital and pentobarbital (Nembutal), escalated.
The first of the new cocktails is a mix of phenobarbital, chloral hydrate and morphine sulfate. It was used in 88 cases in 2015 and 44 cases in 2016.
It is probable that similar experimental lethal cocktails will be used in New South Wales.
As in the Voluntary Assisted Dying Bill, there is no requirement under the Washington Act for a physician or any other person to be present when the lethal dose is ingested.
Since 2009 there have been 200 cases where no health-care provider was present when the lethal dose was ingested and a further 104 cases where it is not known if a health-care provider was present.
In other words, in some 304 cases people have died ingesting a dose of lethal medication, legally prescribed under Washington law, and nobody knows whether the person freely ingested the lethal dose or they were cajoled, coerced or forced to do so by another person.
I encourage you to carefully consider the implications for vulnerable members of the community before taking this dangerous path.
Thursday, 5 October 2017
On 19 September 2017, just two days before the assisted suicide bill (euphemistically called the Voluntary Assisted Dying Bill 2017) was introduced respectively into the Legislative Council, the American College of Physicians published its updated position paper on Ethics and the Legalization of Physician-Assisted Suicide in its prestigious Annals of Internal Medicine.
The American College of Physicians is the largest medical specialty organization in the United States, with members in more than 145 countries worldwide. ACP membership includes 152,000 internal medicine physicians (internists), related subspecialists, and medical students. Internal medicine physicians are specialists who apply scientific knowledge and clinical expertise to the diagnosis, treatment, and compassionate care of adults across the spectrum from health to complex illness.
Its position on assisted suicide is therefore of great interest, not just in the United States, but here in New South Wales.
The Position Paper considers – but rejects - the argument for assisted suicide based on patient autonomy:
Some have advocated strongly, on the basis of autonomy, that physician-assisted suicide should be a legal option at the end of life. As a proponent of patient-centered care, the American College of Physicians (ACP) is attentive to all voices, including those who speak of the desire to control when and how life will end. However, the ACP believes that the ethical arguments against legalizing physician-assisted suicide remain the most compelling. On the basis of substantive ethics, clinical practice, policy, and other concerns articulated in this position paper, the ACP does not support legalization of physician-assisted suicide. It is problematic given the nature of the patient– physician relationship, affects trust in the relationship and in the profession, and fundamentally alters the medical profession's role in society.
The Paper stresses that the real, practicable and ethical alternative to assisted suicide is to properly address the needs of patients at the end of life and their families.
Society's focus at the end of life should be on efforts to address suffering and the needs of patients and families, including improving access to effective hospice and palliative care.
Access to state-of-the-art symptom control remains limited for all dying patients. Of particular concern, evidence of ethnic and racial disparities in access, outcomes, and communication is increasing. Many patients fear they will not receive appropriate end-of-life care when they need it. Others are concerned about being a financial, physical, or other burden on their family, losing autonomy or control, or being placed in a long-term care facility. Some are alone or lonely; loneliness has a mortality risk similar to that of cigarette smoking, yet its health implications are underappreciated. Many persons approaching death are clinically depressed or have other psychiatric comorbid conditions, and some contemplate suicide. According to Wilson and colleagues, “the expression of a desire for death by a terminally ill patient should raise a suspicion about mental health problems; by itself, however, it is not definitively diagnostic of one”. This desire fluctuates over time and may be related to inadequate symptom management. Medicine can and should ameliorate many of these problems; some, however, are outside the scope or goals of medicine and should be addressed in other ways.
The Paper also highlights social justice issues connected with assisted suicide.
Legalization of physician-assisted suicide also raises social justice issues. Society and the medical profession have duties to safeguard the patient–physician relationship and human dignity. These duties apply especially to the most vulnerable members of society: the sick, the elderly, children, the disabled, the poor, minorities, and others.
Some individuals might view themselves as unproductive or burdensome and, on that basis, as candidates for assisted suicide, especially if a physician raises it or validates a request.
This is a very valid concern as the data from Oregon shows that in 2016, nearly one out of two (48.87%) people who died after taking prescribed lethal medication cited concerns about being a “Burden on family, friends/caregivers” as a reason for the request.
Does the concern about being a burden originate solely from the person or is it generated by subtle (or not so subtle) messages from family, friends and caregivers - including physicians - who find the person to be a burden or a nuisance or just taking too long to die?
Elder Law expert Margaret Dore has commented:
In both Washington and Oregon, the official reporting forms include a check-the-box question with seven possible "concerns" that contributed to the lethal dose request. These concerns include the patient's feeling that he was a "burden." The prescribing doctor is instructed: "Please check 'yes,' 'no,' or 'don't know' depending on whether or not you believe that a concern contributed to the request." In other states, a person being described as a "burden" is a warning sign of abuse. For example, Sarah Scott of Idaho Adult Protection Services describes the following "warning sign": "Suspect behaviour by the caregiver . . . [d]escribes the vulnerable adult as a burden or nuisance." The recommendation is that when such "warning signs" exist, a report should be made to law enforcement and/or to the local adult protective services provider. Washington and Oregon, by contrast, instruct its doctors to check a "burden" box. Washington and Oregon promote the idea that its citizens are burdens, which justifies the prescription of lethal drugs to kill them. Washington's and Oregon's Acts do not promote patient "control," but officially sanctioned abuse of vulnerable adults.
The ACP Position Paper also refers to the link between legalizing assisted suicide and an overall increase in the suicide rate, especially among the elderly:
Physician-assisted suicide laws have been associated with a 6% increase in total suicides (15% in those older than 65 years) in the states where physician-assisted suicide is legal, controlling for state-specific time trends.
The American College of Physicians acknowledges the valid concerns from disability groups.
Vulnerable communities and individuals raise strong concerns that legalization leads to attitudinal changes, subtle biases about quality of life, and judgments that some lives are not worth living. National disability groups are opposed to physician-assisted suicide.
Rather than just rejecting assisted suicide as incompatible with the proper goals of medicine as well as the common good, the ACP’s Position Paper sets out a very helpful 12 step program for caring for patients at the end-of-life who may at some stage request assisted suicide:
Regardless of jurisdiction, physicians may encounter patients who request physician-assisted suicide (or express fear of suffering with death). Patient concerns and reasons for the request should be discussed thoroughly. As for all patients nearing the end of life, the physician should:
Be present, listening to the patient and keeping dialogue open, exploring the reasons for the request, trying to understand its meaning and seeking alternative solutions where possible.
Affirm that he or she will care for and not abandon the patient, accompanying and advising the patient through the journey of end-of-life care (studies suggest “the desire to hasten death is future focused and appears to be related to fear of distress and not coping, rather than with current levels of distress or coping ability”.
Discuss patient goals of care and the nature of curative and comfort care, explaining a both/and approach to disease-oriented and palliative care as well as an either/or approach and asking, for example, how do you hope I can help you?
Facilitate advance care planning and an understanding of surrogate decision making, as desired by the patient.
Ensure that the patient is fully informed of the right to refuse treatments and what that entails.
Discontinue or do not start medications and interventions that interfere with the patient's values, goals, and preferences.
Assess and treat the patient's pain and other distressing physical and psychological symptoms.
Assess and optimize patient function through a whole-patient focus.
Coordinate, as desired by the patient, the efforts of other members of the health care team, and use community-based resources to address financial, emotional, and spiritual burdens on the patient and family.
Prepare the patient and family for what they can expect as illness progresses, addressing uncertainty together and ensuring that the patient and family have informed expectations, including, for example, an understanding that advanced illness often entails a natural loss of appetite and thirst.
Regularly assess the patient's status and decision-making capacity.
Arrange hospice care at home if that is the patient's preference, being cognizant that palliative and hospice care expertise should be used as early as is indicated. Many patients in the United States receive such care too late or not at all.
None of the processes that would be set up under the Voluntary Assisted Dying Bill 2017 would help facilitate such a thorough, thoughtful, helpful approach to end of life care. Instead the Bill would put in place a tick a box, form filling, one way process that ends with a person, possibly alone, ingesting an experimental cocktail of lethal drugs or being injected by a doctor with a deadly poison.
The people of New South Wales deserve better. The ACP’s twelve step program points the way.
Tuesday, 3 October 2017
In an unusual display of bipartisanship, five Democrats and five Republicans have cosponsored a resolution in the United States House of Representatives warning that “assisted suicide (sometimes referred to as death with dignity, end-of-life options, aid-in-dying, or similar phrases) puts everyone, including those most vulnerable, at risk of deadly harm and undermines the integrity of the health care system.”
The resolution recites in its twenty-two preambular paragraphs a series of substantial reasons for opposing the legalisation of assisted suicide, regardless of the particular euphemism used to describe its harsh reality.
The first reason given is that, while “society has a longstanding policy of supporting suicide prevention” introducing “a public policy of assisted suicide” directly undermines this.
The so-called Voluntary Assisted Dying Bill 2017 would adopt as public policy in New South Wales, the availability of State approved assisted suicide for some members of the community, directly undermining suicide prevention efforts.
It is difficult to think of anything a State could do that more directly contravenes the fundamental message of all suicide prevention programs – that everyone’s life is of value and that there is always hope.
World Suicide Prevention Day 2017 was observed on 10 September with the theme “Take a minute, change a life”.
In New South Wales, if Parliament votes for the assisted suicide bill, doctors will take a minute to prescribe a suicide drug to end a life.
The bipartisan resolution goes on to identify the groups most at risk from assisted suicide: people who are elderly, experience depression, have a disability, or are subject to emotional or financial pressure to end their lives.
None of the so-called safeguards in the Bill provides effective protection for these groups of people.
The resolution cites the very telling data from Oregon that proponents of assisted suicide never cite because it undermines the narrative on which they are marketing assisted suicide, namely that it is ONLY for a very small group of people who have unrelieved pain or other severe physical symptoms that cannot be helped by palliative care.
The Oregon Health Authority’s annual reports reveal that pain or the fear of pain is listed second to last (25 percent) among the reasons cited by all patients seeking lethal drugs since 1998, while the top five reasons cited are psychological and social concerns: “losing autonomy” (92 percent), “less able to engage in activities that make life enjoyable” (90 percent), “loss of dignity” (79 percent), “losing control of bodily functions” (48 percent), and “burden on family friends/caregivers” (41 percent).
The Bill would facilitate assisted suicide on the basis of “suffering” which “cannot be relieved in a manner that the person considers tolerable” (Clause 9 (1) (d) (iv)). This subjective approach to suffering is broad enough to encompass all the reasons given by Oregonians for requesting assisted suicide, including feeling like a burden on family.
The resolution also points to the flaws in the process set up in Oregon and the handful of other US States that have copied that model, including:
no requirement to “receive psychological screening or treatment, though studies show that the overwhelming majority of patients contemplating suicide experience depression”
The Bill does not provide for screening for depression but only for decision-making capacity, that is the ability to understand basic information about the person’s condition and about assisted suicide. Most people committing suicide have full decision-making capacity but need help overcoming depression and other drivers of suicidal ideation. The Bill does nothing to facilitate such help.
no requirement for a medical attendant to be present at the time the lethal dose is taken, used, ingested, or administered to intervene in the event of medical complications
The Bill does not provide for a health professional to be present at the time of suicide by poison. See information on medical complications in Oregon here.
no requirement that a qualified monitor be present to assure that the patient is knowingly and voluntarily taking, using, ingesting, or administering the lethal dose
The Bill does not provide for a monitor to be present at the time the poison is taken, nor even require that the person have decision-making capacity at that time, which may be months or even years after the poison was provided.
The resolution concludes:
That it is the sense of the Congress that the Federal Government should ensure that every person facing the end of their life has access to the best quality and comprehensive medical care, including palliative, in-home, or hospice care, tailored to their needs and that the Federal Government should not adopt or endorse policies or practices that support, encourage, or facilitate suicide or assisted suicide, whether by physicians or others.
New South Wales would do well to adopt this wise and thoughtful approach to end-of-life care rather than facilitating the suicide of its citizens.
Thursday, 28 September 2017
After making much of the fact that it “follows the conservative Oregon model of voluntary assisted dying and not the broader European models of voluntary euthanasia” he went on to misstate that under the Bill “certain terminally ill persons may be assisted by their medical practitioners and other qualified health practitioners to administer a substance to themselves.”
This is a very odd, inaccurate and misleading way of describing what the Bill would actually allow. Clause 5 of the Bill includes a provision that “if the patient is physically incapable of self-administering a lethal dose of an authorised substance” a doctor or a nurse may directly administer the lethal dose to the patient.
This is euthanasia on the broader European model. Except that is more radical still by allowing, as a world first, nurses to directly euthanase people.
Mr Khan claims that the Oregon model is safe. This claim is contentious and cannot be sustained if the albeit limited data from Oregon is carefully scrutinised.
READ OUR FACT SHEET ON ASSISTED SUICIDE – THE OREGON MODEL FOR AN OUTLINE OF THE NUMEROUS DANGERS IN THE OREGON MODEL
And Mr Khan’s assisted suicide and euthanasia Bill goes well beyond Oregon by allowing people with a prognosis of 12 months to live compared to Oregon’s provision of 6 months to live; allowing euthanasia as well as assisted suicide; and by allowing nurses to administer euthanasia.
Tuesday, 26 September 2017
Anyone could be forgiven for thinking that assisted suicide is an issue whose ‘time has come’.
But that’s not the case.
Case in point – the USA. Their momentum has decidedly shifted.
23 Bills tabled in US states in 2017 – all failed
At least 4 more initiatives expected to fail in the next few months
The momentum has shifted in the USA, pointing to the reality that there is no sense of inevitability about assisted suicide and euthanasia.
It is not as if there is a groundswell behind such changes, neither in the USA nor in Australia.
Thursday, 21 September 2017
British neurosurgeon and advocate for legalising assisted suicide Henry Marsh has argued that “Even if a few grannies get bullied into [assisted suicide], isn't that the price worth paying for all the people who could die with dignity?”
As you consider your position on the Voluntary Assisted Dying Bill 2017 one key question to ask is how sure can you be that the provisions of the Bill will only apply to a small, well-defined group of people, imminently dying and in otherwise unbelievable physical pain who freely and without any kind of pressure or coercion choose to request assisted suicide? (Assuming, contrary to the evidence from palliative care experts that there is pain that can’t be relieved.)
Many people hold the view that the death penalty may be justified in a particularly horrific case. However, such people may still reject the reintroduction of the death penalty because they are not convinced that any proposed regime would ensure that not even a single innocent person is put to death wrongly by the State. The same test should be required for any regime claiming a safe approach to assisting the suicide of certain Australians.
Some of the categories of people who may be at risk from the Voluntary Assisted Dying Bill are:
People wrongly diagnosed with a terminal illness or with an inaccurate prognosis who may have years to live;
People without access to gold standard palliative care or deflected from seeking palliative care through the availability of assisted suicide who are suffering unnecessarily;
Elderly people who are overtly or subtly made to feel a burden by family members or carers with “inheritance impatience”
People with mental illness especially undiagnosed depression that could be treated;
People with disabilities who are often told by others that would “be better off dead”;
Suicidal young people who may not distinguish a message that suicide is a good, wise choice for some members of the community (the terminally ill) but not for them.
Think about these people at risk as you consider whether legalising assisted suicide would be good or bad public policy.
Tuesday, 19 September 2017
When discussing assisted suicide and euthanasia, details, scenarios, and opinions can seemingly complicate the matter.
But the question is simple: should we allow doctors to intentionally assist a person in suicide?
Everyone would want the very best of care at the end of life, and to receive the best pain and symptom management possible.
No one wants to prolong suffering – we want to provide the most relief and comfort possible. However, the issue really isn’t about pain; it’s about fear.
Do we give in to fears or learn to deal with them? Do we abandon people to such fears or do we help them to work through them?
These are tough questions, but there is another, grave question that must be answered: do we make public policy for the common good or do we make fundamental changes to our laws on homicide for the few?
These kinds of questions know no conventional political divide. Euthanasia and assisted suicide voting records really don’t line up with any other issue.
Ultimately, euthanasia and assisted suicide legislation blurs the line between killing out of compassion and killing out of fear.
Such an issue requires careful consideration and debate.
Thursday, 14 September 2017
At other times and in other places bills have been called, ‘dying with dignity’, ‘dignity with dying’, ‘rights of the terminally ill’, ‘end of life options’ etc., but they all really amount to much the same thing.
Why is it that we cannot simply call the ‘Voluntary Assisted Dying Bill’ the ‘Assisted Suicide and Euthanasia Bill’?
It wasn’t that long ago in Australia that we did just that. Why the change? Why the euphemism?
Words do matter and the use of proper terms matters – especially when we are talking ‘life or death’ situations and such a fundamental shift in public policy.
The Draft ‘Voluntary Assisted Dying Bill 2017’ is largely based on the Oregon USA Dignity with Dying legislation which created an assisted suicide regime.
Up until the last few years, most bills presented in Australia’s Parliaments on this issue have focussed on euthanasia and not so much on assisted suicide.
Yet with the data and anecdotes from both Holland and Belgium increasingly showing significant problems in recent years and with the more recent Canadian experiment also developing problems, it is perhaps understandable that supporters of some form of legalised early death would turn to Oregon as a model.
But is Oregon a model worth following?
Oregon’s website describes the data collection protocol for its annual reports, as follows:
“The identity of participating physicians is coded, but the identity of individual patients is not recorded in any manner. Approximately one year from the publication of the Annual Report, all source documentation is destroyed.”
Alicia Parkman, Mortality Research Analyst for the Oregon Health Authority, makes a similar representation as follows:
To ensure confidentiality, our office does not maintain source information on participants.
(See appendix at A4 in this deposition.)
The significance is that Oregon’s annual reports cannot be verified to source documentation.
Even so, research and the annual reports from Oregon do show some alarming concerns. Issues with administration, short or no pre-existing doctor/patient relationships, deaths that were far from ‘peaceful’, wrong prognoses, mental health concerns, etc. paint a very different picture.
Many of these risks cannot be adequately dealt with.
Please, don’t put the people of New South Wales at risk!
Thursday, 7 September 2017
Doctors who know what they're talking about say it's hard enough to give a prognosis of six months to live. For 12 months, it's almost impossible!
What does '12 months or less to live' really mean? How accurate is a prognosis that far out?
The draft NSW so-called 'Voluntary Assisted Dying Bill 2017' talks about the fact that the 'patient must… be suffering from a terminal illness which, in reasonable medical judgement, is likely to result in the death of the patient within 12 months...'
If a week is a long time in politics, then can we expect prognostication as far out as 12 months to be accurate?
The answer from the research and from common sense really is, no. Not only is a prediction so far out really 'guess work,' but the diagnosis may be wrong and treatments may be successful.
The story of Jeanette Hall is cautionary — her remission has given her 17 more years of life and more to come!
And Jeanette is not the only person to have outlived her '6 months or less to live' prognosis in either Oregon or Washington state.
The further out from the expected death, the less accurate the prognosis becomes. Six months is not safe; 12 months is certainly even more unsafe!
You can learn more about the problems with prognosis by downloading our new FACT SHEET: Assisted suicide: “death expected in not longer than 12 months.”
Tuesday, 5 September 2017
As the debate in the New South Wales Parliament approaches, it is important to note how euthanasia and assisted suicide are affecting other states.
Before serious debate takes place, we have to look at all the facts available to us. Currently, the state of Victoria is providing us with real results of approaching assisted suicide and euthanasia legislation.
Polls recently released in Victorian newspapers suggest that between 66 and 86 per cent of Victorians support assisted suicide and euthanasia.
Are these polls an accurate reflection of Victorian sentiment on the issue?
Are these polls based upon people having a solid understanding of the subject?
70% becomes 51%
The Sexton Marketing Group poll from July this year in selected Victorian electorates returned a similar headline number; 70% support to be precise.
But the addition of one simple further question saw support drop to 51%. Providing information improves literacy on the subject and has been shown repeatedly to collapse support.
More information, precise language rather than euphemisms, and the explanation of alternatives to assisted suicide and/or euthanasia all change the polling outcomes.
You can’t ignore polling, but it is legitimate to question precisely what the poll really tells us.
Given the low level of public literacy on this subject across Australia, the only solid conclusion we can arrive at is to note that a significant proportion of the population is deeply concerned that people should not suffer at the end of their lives.
As we approach the introduction of a euthanasia bill in NSW, it is important to take insights from Victoria. As their polls show, euthanasia and assisted suicide are tough issues, and are on their way to becoming major voting points.
Thursday, 31 August 2017
Australia’s population is aging at a growing rate. At the same time, economic pressures and rising house prices are making it increasingly difficult for younger Australians and Australian families to get established in property.
Into that mix we find the trend of Elder Abuse; often called ‘inheritance impatience’.
Apart from the abuse itself, it is largely characterised as a hidden epidemic: hard to detect and under reported.
Whether the sense of ‘being a burden’ is internal or external to the person – or both – it remains a significant public policy challenge to eradicate elder abuse and is a very real concern in regards to consent for assisted suicide and euthanasia. There will be circumstances where subtle coercion and abuse may go undetected.
As Dutch academic, Henk Reitsema points out:
“Before it becomes a legal option, caring for someone who needs care is just the human thing that you do. But once they have the option to 'choose' to let their lives be ended, their not doing so is to choose to burden their next of kin - and that's unfair!”
Our elders deserve better!
Tuesday, 29 August 2017
HOPE wants all Members of the NSW State parliament to have the facts on assisted suicide and the impact it has on your electorates.
Meet Jeanette Hall. Jeanette has survived her cancer prognosis by 17 years and still loves life!
But if she had been referred to a different Oncologist in Oregon in 2000, it might have been different.
The Victorian Ministerial Advisory Panel’s final report cited the Hall case as proof that the law in Oregon works. Jeanette’s Oncologist, Dr Stevens responded:
Their conclusion [the MAP] is not the conclusion that Jeanette Hall or I would use. Jeanette was saved because she saw a doctor (myself) who did not believe in assisted suicide. She strongly believes that if she had been under the care of a doctor who believed in assisted suicide that she would now be dead. Instead she is alive 17 wonderful years later.
Please reach out to me with any questions about the consequences of euthanasia and assisted suicide.