Voluntary Euthanasia: Impacts on Individuals and Society

The Rev Peter Kurti is Senior Research Fellow, Culture, Prosperity & Civil Society program at the Centre for Independent Studies and an author, most recently, of Euthanasia – Putting The Culture to Death. Penny Hackett is the President of Dying With Dignity NSW and is presently legal advisor to a funds management and corporate finance business with a focus on corporate governance and compliance. On Monday 18 February 2019, Peter Kurti and Penny Hackett spoke at The Sydney Institute to give different views on the case for and against euthanasia.

VOLUNTARY EUTHANASIA – IMPACTS ON INDIVIDUALS AND SOCIETY

PENNY HACKETT

Most discussion about voluntary euthanasia looks at what the impacts might be on society if laws are passed to allow an individual to exercise choice over their death.

Let’s flip the argument and examine the impacts on society right now, which result from NOT having these individual rights? Would passing VAD laws actually benefit society?

I won’t bother with definitions and labels. Call it what you like, but we are discussing the right of a mentally competent adult, with unrelievable suffering from a terminal illness or medical condition, to seek assistance to die, whether by their own hand, or with help from a doctor.

Euthanasia, assisted dying, assisted suicide, medical aid in dying…. take your pick. Just remember that the key word is “voluntary”. I will use the expression “voluntary assisted dying” or “VAD” tonight.

There are various models, but the new Victorian law and plans in other states, require sign-off from two doctors, have detailed eligibility criteria and safeguards, written and oral requests, waiting periods and so on. The detail is important but not unless we have dealt with the fundamental concerns. I’m happy to discuss the detail at another time if anyone has several hours to spare.

Is there anyone here who doesn’t plan to die?  Obviously not…

Death is part of life. We all face it and most of us will experience the death of loved ones. Many of you here will have done so. Was it a good death or a bad death? Did it make you think about how you might die yourself? Does it make you fearful? Extrapolate that thought to the community ……

Everyone is impacted by death and it is natural for us to have a view on it. Although each death involves an individual, the issue of death and dying is fundamental to society. And what is “society”. There is no time to philosophise here, but I believe that society is the collective experiences and beliefs of individuals in our community. A more important question is who gets to speak for society?

I will touch on the main arguments raised by opponents of VAD

• Palliative care will be damaged
• Palliative care can address all suffering
• Suicide will become normalised
• It is impossible to construct adequate safeguards
• The doctor-patient bond will be destroyed

These are important issues and must be carefully considered. There many other arguments, the most credulous being the risk of illegal harvesting of organs. I will not dignify that with a response.

Who argues so strongly against VAD? There is generally a religious connection, often concealed, but almost always present. And faith groups are perfectly entitled to their views. But is it appropriate for groups representing the minority to claim to speak for “society” when we know that the overwhelming majority support VAD laws? All recent independent surveys show support around 85 per cent and this includes a majority of Christians.

Let’s get down to the coalface shall we?

These discussions tend to be theoretical, tied up with philosophical arguments. Unfortunately, the debate is often casually dismissive of the experiences of the people involved in the actual dying and those around them. So let’s step down from the rarified air of intellectual debate and go to the bedsides.

As I was preparing this speech, I received this email from Kylie:

Dear Gabrielle Upton ….. On 30 November 2018 I watched my beautiful, dignified 83-year-old mother finally choke to death on her own regurgitated fecal matter after three days of slow suffocation from it, much of which she was conscious for. This was not an unusual death – in fact quite standard for sufferers of stomach or endometrial cancer. In 2015, my beautiful 86-year-old father drowned in his own fluids as his lungs filled due to heart failure. It took two weeks. Again, a common occurrence. Both begged to be helped to die and there was nothing I could do.

An awful experience, but not an isolated one. And it’s not the worst story I have read. I have read over 3000 messages to NSW MPs which bear witness to the end of life suffering in our community and the trauma left behind. Most are from family members, some from patients and many from nurses and healthcare workers who attest to the trauma. We cannot dismiss this testimony.

Voluntary assisted dying is not principally about dying. It is about ending suffering and relieving fear so a person can make the most of their remaining life. Indeed, many people don’t take their lethal dose – it is sufficient comfort to know that it is available. People want to live and will fight for life until they reach the point where they can bear no more. Sometimes, death is not the worst thing that can happen to a person.

So, what about palliative care?

I cannot stress enough the importance of palliative care to the community. It requires much more funding and support. But it can, and should, work hand in hand with VAD laws.

It is claimed that VAD laws would cause irreparable harm to the palliative care sector and, therefore, to society. However, Palliative Care Australia (the peak body) has just released two reports after reviewing evidence from around the world. They found no evidence of harm to the sector and it seems that VAD laws may actually enhance palliative care. Case closed on that argument.

Opponents also claim VAD is not necessary because all bad deaths can be avoided by better access and funding for palliative care. Much as we wish it were otherwise, palliative care cannot address all suffering at end of life. Their own research data indicates that physical symptoms of about 4-8 per cent of their patients cannot be controlled.

But still some refuse to acknowledge this, despite the unequivocal evidence and the testimony of those who have witnessed terrible suffering in some of our premier palliative care facilities.

And what is suffering anyway?

For most people, PC does a reasonable job of dealing with physical symptoms such as pain, breathlessness and nausea. But suffering is more than that. Psychological

and existential suffering can be much more profound. Loss of independence, inability to move or communicate with loved ones. Things which make life worth living.

No palliative care can give you back control of your bladder and bowels, restore your ability to speak, eat or even to swallow your own saliva. Suffering cannot be determined objectively. What is unbearable for one person may be tolerable for another. Who among us is arrogant enough to determine when a dying person has suffered enough?

Some believe that suffering is somehow connected with a person’s character. The desire to avoid suffering implies weakness. It is taking “the easy way out”. Some even think suffering is heroic, part of the human condition, a necessary struggle etc.

It is impossible to separate some of this thinking from theology where the concept of a “natural death” (in gods time) is fundamentally disturbed by a person exercising personal autonomy. And people have every right to this view. But they can’t claim to speak for the majority of others in society who don’t share that belief.

Returning for a minute to the coalface

In the final stages of life, palliative care boils down to a handful of drugs for pain, sedation and to reduce secretions that cause people to choke and gurgle as their lungs cease to function. It’s a waiting game so the patient is frequently “starved and dehydrated” to expedite the process. This sounds like torture doesn’t it? But it is a well-accepted practice in palliative care

Those who still have uncontrollable symptoms, may, if they are lucky, be given what’s called terminal or palliative sedation. This is effectively an induced coma where the patient is (hopefully) unaware of their suffering. Often this brings on death quite quickly, sometimes it can take weeks. This sounds a lot like slow euthanasia doesn’t it?

Shouldn’t the mentally competent patient have the right to ask for a drug to end their lives peacefully and quickly instead of dying slowly and painfully?

The reality is that people are dying terrible, painful and prolonged deaths even with optimal end of life care. This is not confined to the individual. It impacts loved ones who often carry the trauma with them for years.

If you want to know of the trauma caused by a bad death, ask the nurses who are at the bedsides with the patients and their loved ones. The Nurses and Midwives Federation strongly support VAD laws and actively lobbied NSW and Victorian Parliaments to pass them.

Death inevitably involves grief, but it need not involve suffering or trauma.

Let’s consider suicide.

Legalised VAD is clearly distinct from the tragedy of suicide in the “conventional sense”. Suicide prevention bodies recognise this. One of the large American groups states that:

Unlike most cases of suicide, the person who has requested and receives aid in dying does not typically die alone and in despair, but, most frequently, where they wish, at home, with the comfort of his or her family.

The grim reality is that the absence of VAD is causing people to commit suicide because they fear a terrible death. The Victorian Coroner testified to parliament in 2017 about violent, distressing and lonely suicides by people facing a terrible death due to illness. They were seeking to avoid suffering. He estimated that one Victorian a week was taking this step. He described hangings, gunshots, poisonings and a 90 -year-old man with cancer who repeatedly shot himself in the head and neck with a nail gun. The WA Coroner has recently stated that over 10 per cent of suicides in his state fall into this category.

The impacts of these deaths go far beyond the individual who has died. The head of the WA Police Union has called for VAD laws saying, “There would be less horrific

suicides and first responders would be spared having to see as many graphic scenes, most of which stay with them for ever”.

My friend’s mum jumped in front of a train at Lindfield Station. She had throat cancer and could no longer eat or speak. She saw no other option. She had access to no other means. Obviously, this was horrendous for her family but think about the impact on the train driver, emergency services workers and members of the public?

In 2017, cancer sufferer Clive Deverall took his life leaving a note saying, “Suicide is legal, euthanasia is not”. He was no “ordinary cancer sufferer”. He was head of the WA Cancer Council for over 20 years and president of Palliative Care WA. For such a man to choose suicide over a “natural death” in palliative care speaks volumes about the inability of the current system to adequately deal with suffering.

Peter Kurti has written about the suicide of his friend John Hirst who seems to have sought help arranging his death and his family was unaware of his plans. Without commenting specifically, it is increasingly common for people to make secret arrangements to die in order protect loved ones from prosecution. Having made their decision to end their lives, they may turn to organisations like Exit to provide information about how to die most efficiently, without mess and without implicating others. If nothing else, it is a better option than the nail gun.

Wouldn’t our society be better served by allowing these people the option of a peaceful death, at home, surrounded by their loved ones (and perhaps the dog), without the collateral damage associated with lonely and often violent suicides?

Impact on doctors and medical staff

It is claimed the VAD laws damage the bond between doctor and patient and the duty to “do no harm”. But if a doctor has the means to relieve a patient’s suffering but cannot or will not do so, surely that is doing harm?

In reality, doctors help patients to die all the time. Everyone knows it. This “nudge nudge, wink wink” assisted dying is unregulated and unreported and sometimes done without the patient’s consent. Lucky you, if you happen to have a doctor who will ease your path.

But what about the possibility of abuse in these circumstances? What are the safeguards? Surely those who oppose VAD laws must be concerned about this dangerous practice? Surely this is causing harm to society. But, strangely, VAD opponents, doctors and MPs are happy to leave this as the status quo.

How is it intellectually or morally supportable to oppose legal assisted dying, while at the same time condoning illegal assisted dying? That makes no sense.

Parts of the healthcare sector have historically been influenced by ideology and religion instead of science and evidence. Faith-based groups provide a majority of the private healthcare and palliative care in Australia. They may refuse to provide services which run counter to their beliefs. Many doctors hold strong ideological and religious views on VAD. Of course, there should be allowance for conscientious objection in any VAD laws. But in what world of medical ethics, is it appropriate for a physician’s own moral or religious views on death and dying to influence the care they provide to their patients?

Doctor’s groups have traditionally been opposed to VAD. That is changing rapidly with many groups formally moving to a position of “neutrality”. The evidence is clear and the sky has not fallen in.

The Royal Australasian College of GPs gave active approval of the Victorian VAD Bill in 2017. The Royal Australasian College of Physicians (which includes the speciality of Palliative Care) has just revised its position from “opposed” to “critical neutrality”. Palliative Care Australia appears to be reviewing its position. The AMA (interestingly, representing less than 30 per cent of doctors) seems to remain opposed to VAD but they do state that it is ultimately a matter for “society and government”.

So, what does “society” and “government” think about VAD? When 85 per cent of the community supports an issue, governments should be listening. People are concerned about how they will die. They are not idiots – they have seen the end of life and many are frightened. The demographic bulge of baby boomers has seen their parents wither and die and are facing their own mortality. They are focussed on their quality of life and of death. They are active participants in their medical care. The days of accepting patronising “doctor knows best” medical care are over.

Independent polling over many years has shown increasing support with recent polling consistently around 85 per cent. There is majority support across all states, all demographics, all political persuasions and among Christians.

The Council on the Ageing (COTA) has just surveyed Australians aged over 50, showing support for VAD at 84 per cent. That age group represents almost 7 million voters. Governments ignore this group at their peril, yet MPs continue to do so, basing opposition on the most spurious of grounds.

Let’s look at two of those spurious grounds based on recent parliamentary debates in NSW and Victoria.

Firstly, that VAD is state sanctioned killing – a “Rubicon” that cannot be crossed. In 2017 this was raised by almost all NSW MPs who voted no to VAD. Many also mentioned the Nazis. But months earlier, the same MPs happily voted for “shoot to kill” laws. We send soldiers to war knowing that some will die and civilians may be killed. Governments make decisions all the time which directly impact on the lives and deaths of individuals.

Secondly, some say, “It’s too hard” – To claim that it is “too hard” to safely legislate for VAD is pathetic. Medical protocols deal with complex issues involving life and death all the time. Returning to the analogy of warfare, detailed laws govern armed conflict and rules of engagement even address when it is lawful to shoot a child soldier.

Don’t tell me that it is beyond the capacity of our elected representatives to deal with the issue of suffering at end of life. Is there something deficient about our MPs that they are unable to grapple with laws which have been successfully introduced in seven US States, Canada, Switzerland, Netherlands, Belgium and now Victoria?

Ample evidence from these jurisdictions shows that VAD laws are safe and effective, safeguarded from abuse and well supported by the community and healthcare sector.

It has been legal in Switzerland to assist a suicide in circumstances since the 1940s. It is a safe, peaceful and prosperous country. If VAD laws really pose a grave risk to society, surely the Swiss would have noticed by now. It’s been seven decades.

Putting the culture to death, tearing at the fabric of society, slippery slopes. Really? The evidence simply doesn’t support it and there are compelling reasons and evidence suggesting that passing VAD laws will instead benefit both individuals and society.