Should you have a say in when you die?

Two experts weigh in on whether there’s a difference between palliative care and euthanasia

Victoria is heading towards being the first Australian state to legalise euthanasia. After a dramatic all-night sitting the state’s lower house, they have passed a bill that grants people who have less than 12 months to live and who are in “unbearable pain” the right to request lethal drugs.

The bill now goes to Victoria’s upper house, the Legislative Council, which contains a wide mix of parties including the Australian Conservatives, the Sex Party and Shooters and Fishers. A key opponent of the bill was Victoria’s Deputy Premier, James Merlino, who as Education minister banished Scripture from the state school timetable. This time around Merlino championed a cause many Christians supported.

Two experts share their views on the difference between palliative care and euthanasia.

Margaret Somerville, Professor of Bioethics at Notre Dame University’s School of Medicine*

What is the difference between palliative care and euthanasia?

Palliative care is the area of medicine most adamantly against euthanasia. The polls show that about 92 per cent of palliative care doctors do not agree with euthanasia.

In palliative care you die a natural death … You see, the issue in euthanasia is not if you die, because everybody dies – how you die is the issue and the big distinction is between dying a natural death and being killed. Euthanasia is when you are either given the means to kill yourself, which is physician-assisted suicide, or the doctor gives you a lethal injection, which is the euthanasia.

“…when you relieve pain, on the whole people live longer, not shorter.” – Margaret Somerville

Margaret Somerville

Margaret Somerville Margaret Somerville

If a pain medication hastens death, how is that not euthanasia?

The so-called double effect is not a very common situation, although it’s brought up all the time by the pro-euthanasia people to say “well, really you’re killing people, you just don’t want to call it that.” If you have a medical practitioner who is properly trained in pain management, then it should be the rare case where you can’t control the pain and you’d have to give something that would have a risk of shortening life.

In the few rare cases where you can’t manage the pain while the patient is conscious, you can use what’s called palliative sedation.

Now you can do a form of slow euthanasia, which they’ve legislated in Quebec, where you give “continuous terminal sedation” with the intention of keeping the person permanently unconscious until they die. But in palliative sedation they give the lightest possible dose, they usually wake the person up to see how they are and if they want to continue with the sedation, so it’s got no intention of killing the person or shortening life.

And the other thing is that when you relieve pain, on the whole people live longer, not shorter.

Christians falls along a spectrum of views on this issue – where do you place yourself?

I am totally against euthanasia and I am totally for fully adequate pain and suffering management.

“I don’t think you can maintain or honour a profound respect for human life if you’re prepared to intentionally take human life.” – Margaret Somerville

Do you think it’s possible to be a Christian and support euthanasia?

I don’t think you can maintain or honour a profound respect for human life if you’re prepared to intentionally take human life. The only exception to that is when taking human life is the only reasonable way to save innocent human life.

So it’s distinctly contradictory to what the fundamental principles and philosophies and theology of Christianity are.

What legislative protections do we need if euthanasia is legalised?

The first thing we have to recognise is that the protections don’t work and we’ve got plenty of evidence of that. I call it narcissistic unawareness, that the people who want euthanasia do not want to admit that the protections don’t work. The tragedy in Canada is that the courts accepted that the protections were fine and that vulnerable people would not be at risk, but that is simply wrong.

The Supreme Court of Ireland looked at the evidence given to the Supreme Court in Canada and said “we come to exactly the opposite conclusion from the Canadian courts; we think that this evidence shows strong evidence of abuse.”

In fact it does, and we’ve tried to reintroduce evidence into the Canadian courts on appeal and on the whole it was refused, and then just last week the Supreme Court of South Africa said no to euthanasia including because the protections don’t work.

Have you ever seen anyone in end-stage illness?

I started researching this area 35 years ago when my father was dying. I’d come back from Canada to Adelaide and he said to me “I want to live as long as I can but I don’t want to live in this terrible pain.” Now I kicked up an enormous fuss in this teaching hospital and they got a pain specialist and he fixed my dad’s pain. My dad lived another nine months with proper pain management and during that time my father said to me, “look, what you achieved was fantastic but not everyone’s got a daughter like me who can go ballistic and turn a hospital upside down.” He said “you’ve got to do something for other people and make sure they get proper pain relief.”

“…it is a breach of fundamental human rights for a healthcare professional to leave someone in pain.” – Margaret Somerville

So I wrote an article in 1981, which got into the literature, then in 1993 I was invited to give the opening keynote to the International Association for the Study of Pain in Paris. I went along thinking I was going to address a meeting of about 400 people and there were about 8000 pain specialists in the audience.

I called this speech The Death of Pain – Killing the Pain but not the Patient with the Pain. Out of that we got what we call the Declaration of Montreal that states it is a breach of fundamental human rights for a healthcare professional to leave someone in pain. That’s now been adopted by the World Medical Association, by WHO, and by pain societies including the Australian Pain Society. So that’s what we have to do, kill the pain not the patient with the pain.

Can you understand why someone might want to end their life prematurely?

Sure, you just say you’ve had enough and you want to get out of this. But you know there’s a very important difference between getting to the stage where you really want to die peacefully and wanting to be killed.

And that’s backed up by research. A recent Dutch study showed something like 48 of 50 people in the Netherlands who had said they wanted euthanasia changed their minds when they were offered very good palliative care.

Also Dr Harvey Max Chochinov, a Canadian psychiatrist who specialises in the psychiatry of dying people, one of his studies showed that people who asked for euthanasia changed their minds as frequently as every 12 hours.

“We must kill the pain and suffering, not the person with the pain and suffering.” – Margaret Somerville

We know that the majority – and I think you could say the vast majority – of people, given proper care at the end of life, want to live as long as they can, as long as they don’t live in terrible pain.

Is it OK for people with diseases that do not respond to palliative care to die in pain?

Of course it’s not OK. Palliative sedation can be used. We must kill the pain and suffering, not the person with the pain and suffering. The Declaration of Montreal establishes that it’s a breach of human rights for a healthcare professional to unreasonably leave a patient in serious pain.

Can palliative care drugs cause people to die more quickly?

If palliative care hastens death it would be unusual but it could happen. In that case, provided the person is serious pain, provided this is the least harmful way you can manage that pain, provided it is given with the intention of managing the pain, then the principle of double effect says that that’s a justifiable intervention. The primary purpose of the treatment is not to kill the person but to relieve the pain, and if there were a shortening of life as a result it’s an unwanted side-effect, whereas the primary purpose of euthanasia is to stop life.

“In Canada, only between 14 per cent and 30 per cent of people who need palliative care receive it.” – Margaret Somerville

Does palliative sedation cause people to die prematurely?

No, not if used correctly. In fact, the relief of pain can prolong life.

Is expert palliative care available across the country? For example, will you have access to the best treatments if you are in Alice Springs?

I don’t know but from what I’ve heard second-hand it is not available even for some people living in a city. In Canada, only between 14 per cent and 30 per cent of people who need palliative care receive it.

*Margaret Somerville is the new Professor of Bioethics at Notre Dame University’s School of Medicine. Australian born, she lived for 41 years in Canada, holding professorships in law and medicine at McGill University, Montreal. Among her published books is Death Talk: the Case Against Euthanasia and Physician Assisted Suicide (2001).

Megan Best, palliative care specialist and bioethicist at Greenwich hospital, Sydney

What is the difference between palliative care and euthanasia?

Euthanasia is an act where a doctor deliberately terminates the life of a patient.

Palliative care is about life; about helping people have the best possible quality of life from the time they’re referred to palliative care to the time they die. It neither lengthens nor shortens life in the care that it gives.

Euthanasia is about death. Palliative care is about life.

If a pain medication hastens death, how is that not euthanasia?

I think that some common practices in palliative care, such as giving large doses of morphine to relieve pain, or giving sedatives to relive distress, have been labelled by the pro-euthanasia lobby as a slow kind of euthanasia.

“No medications given in therapeutic doses shorten life. None.” – Megan Best

But this is all based on a myth that morphine shortens the life of the patient. There’s been exhaustive research showing that’s not true. So it’s muddied the waters in terms of what is done now and what would change if a euthanasia law is passed.

No medications given in therapeutic doses shorten life. None.

Pain medication in therapeutic doses doesn’t make you lose consciousness. People normally lose consciousness and stop eating and drinking at end of life as part of the dying process.

In a very rare instance we would sedate someone with sedatives to the point of unconsciousness if they were extremely distressed. But this is very rare, and done with the consent of the patient. We wake them up regularly to make sure they’re still happy with that situation.

Christians falls along a spectrum of views on this issue – where do you place yourself?

I am totally opposed to euthanasia in terms of a change to the law. A lot of people confuse the community debate on whether we should change the law to allow a doctor to kill their patient with whether euthanasia can ever be justified for an individual.

I think that if you were an individual whose own ethical framework was based on the idea that you should be able to be autonomous and control your own body, of course you can justify it for yourself.

“As a Christian I think it’s wrong to kill an innocent human being, even when they ask you to.” – Megan Best

But the dangers of euthanasia are based on what would happen if we changed the law for the whole community. So at the present time, an individual is free to end their own life under our law if they want to. But they certainly shouldn’t be allowed to compel someone else to kill them, and in the places where euthanasia has been legalised, even when strict guidelines have been in the legislation, we have seen abuse where vulnerable people are killed without their knowledge or consent.

That’s why as a community we shouldn’t agree to the legalisation of euthanasia. I think that it is not safe for our community to change the law in this way, because of what happens to vulnerable people in the places in which it has happened.

One of the most basic tenets of society is that we don’t kill each other, even for reasons of mercy and compassion. It’s a very basic value of our society. Once we say it is okay for some people to kill other people then we are devaluing life. And I think that would be a very dangerous step.

As a Christian I think it’s wrong to kill an innocent human being, even when they ask you to.

What legislative protections do we need if euthanasia is legalised?

I don’t think it’s possible to write a law that can’t be abused. If you look at jurisdictions where assisted suicide and euthanasia has been legal, even in the Northern Territory from 1995-97, the law has been abused. It’s the nature of human beings. There will always be some people who abuse the law.

I believe end of life care should be left as an issue between the clinician and the patient to help the patient get the best quality of life they can in the time they have left.

I also believe that a lot of the suffering at the end of life which motivates the call for euthanasia is based on existential distress as much a physical distress. Physical distress could be improved by greater access to palliative care. While we don’t have universal access to palliative care it is immoral to pass a euthanasia law. I also think that while we have insufficient support for people with disability, it is immoral to pass a euthanasia law.

But regarding legislation, the things that people generally look at include: whether someone is depressed, or mentally competent. This includes psychiatric review, and a single consultation is not sufficient. There must be no coercion, and a cooling-off period should be in place because the will to live in terminally ill people fluctuates. I’d also want to make sure someone had actually experienced palliative care rather than just know that it’s available, and ensure that people given euthanasia had a shortened life expectancy.

Can euthanasia be an act of mercy or compassion?

No, I think that to kill someone towards the end of life you are cheating them of the opportunity to have a final period of growth, which human beings only experience between the time they know they’re going to die and the time they actually die.

There is an enormous amount we can do for people suffering at the end of life that is not happening. I think that we cheat people of the end of their life if we say we’re just going to kill them and not try to improve their situation.

Do you think it’s possible to be a Christian and support euthanasia?

No. In the Bible it says (in the Ten Commandments) we should not kill. I think that’s pretty clear. We shouldn’t kill innocent people. There are no qualifications of that command that say it’s OK if they want you to.

Can you understand why someone might want to end their life prematurely?

Yes, I can. There are a few people who sincerely want to die. I can see how they can think it’s a good thing.

However, as a palliative care specialist who knows what care is possible, I think they’re wrong; I think there’s a better way to handle the end of life. There can be positive things to come out of helping someone come through the suffering. Our society will be the poorer if rather than continuing to help these people we just end their lives.

In your role as a palliative care specialist, have you ever met a Christian who wants to end their life prematurely?

No. Christians generally want more time, not less.

Which diseases does palliative care not work for?

Palliative care is an approach to care, not a list of treatments. All people would benefit from some form of palliative care input at the end of life.

Is it OK for people with these diseases to die in pain?

It is never OK for anyone to be in pain.

Does palliative sedation caused people to die prematurely?

No, not when given in therapeutic doses.

Can palliative care drugs cause people to die more quickly?

Not if given in therapeutic doses.

Is expert palliative care available across the country? For example, will you have access to the best treatments if you are in Alice Springs?

Access to palliative care is dependent on care setting as well as geography, it is not as simple as just where you live. Currently government funding of palliative care is inadequate to meet needs.