November 17, 2016

Global Law Reform: 2 Steps Forward, 1 Step Back

There is little doubt that voluntary euthanasia/ ‘medical aid in dying’ law reform is on the move!

The recent success of Colorado’s Proposition 106 is the good news story in this regard.

You can read more about this new End of Life Choices law here.

Following on Colorado’s heels is Washington DC’s Council passing their ‘Death with Dignity’ bill this week.

That bill is now at the Mayor’s desk awaiting signature into law.

Both the Colorado Act and Washington Bill are incredibly restrictive.

Both allow assistance only for the terminally ill, with less than six months to live.

The entire process is doctor controlled and mediated. This the ‘medical model’ of assisted dying writ large.

The third place to move on Voluntary Euthanasia/ Assisted Dying is the small Australian state of South Australia.

However the news is less good from here. Disastrous in fact.

The bill was introduced by Liberal MP Duncan McFetridge. With a tied vote of 23 votes for and against the Speaker of the House of Assembly, Michael Atkinson, voted against the bill. The fat lady has sung.

This is the 15th time a Voluntary Euthanasia bill has been defeated in this tiny state’s Parliament.

Exit Member, Max Bromson, was instrumental in bringing the issue back to public debate in South Australia.

Max died in July 2014 after illegally importing Nembutal from China.

Max was 66 years old and suffering from bone cancer.

Max Bromson & Philip Nitschke at Adelaide Central Markets, July 2014

The next Australian state to address the issue will be Victoria in early December 2016.

Watch this space for updates.

Fiona Stewart

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November 6, 2016

Why America’s Medical Aid in Dying Acts are Failing Seniors

In recent weeks, the Dutch Ambassador to New Zealand, Robert Zaagman, has described NZ political debate about whether to introduce a voluntary euthanasia/ assisted suicide law as being akin to Dutch debate 20 years ago.

While an increasing number of US States are moving beyond the ‘should we’ – ‘shouldn’t we’ legislate on end of life choices, the model that States such as Colorado and Washington DC are envisaging is far from ideal. Indeed it could even be discriminatory and cruel.

In Exit’s opinion, the chosen model of law is so firmly predicated on the medical model of doctor-assistance that it disenfranchises the majority of older people who would seek control over their end of life.

Let’s explain:

On 8 November, Colorado – with its Proposition 106 – is expected to become the third State to pass a ballot to legalize ‘medical aid in dying’. (Colorado will follow Oregon and Washington).

Colorado will join Oregon, Washington, Vermont and California in legislating for end of life rights. (While Montana case law has confirmed the legality of assisted suicide, that State is yet to legislate).

Like all other States, the Colorado legislation is not only ridiculously restrictive but it places the control disproportionately in the hands of the doctors.

Take a look at the qualifying criteria.

1. The person must be an adult

The law refuses to acknowledge that teenagers (aged 18 years and under) can be unlucky enough to get terminal diseases.

Neuroblastoma, for example, is a common childhood cancer. Survival rates are 1 in 2. However, there is very little treatment if relapses are experienced.

Why should young people with this cancer not have the same rights to end their suffering as their adult counterparts. Especially given the advanced maturity of young people with terminal illness and the fact that they are already expected to make decisions about their various treatment options.

2. The person must be terminally ill, with six months or less to live

This type of so-called ‘safeguard’ is inherently problematic.

Firstly, many terminal illnesses do not have a defined timeline prognosis.

This means that some folk with a terminal illness will fail to qualify to qualify.

You can’t just have cancer if you want to be prescribed your lethal drugs. You must have really-advanced or really fast-moving Stage IV cancer.

Determination of a person’s prognosis sets physicians up as futurists, and as Gods.

This is neither logical nor fair. There is no crystal ball when it comes to being ill.

Secondly, and equally importantly, the criteria of six months or less to live excludes people with, for example, Multiple Schlerosis or other painful conditions such as Rheumatoid Arthritis.

And what about people with disabilities such as Tetraplegia who may live forever but who have had enough, but can’t help themselves to suicide?

Or what about eye conditions such as Macular Degeneration?

Over the past 20 years, Exit has been approached by many many older people with conditions such as these.

While they may not be our reasons for wanting choice in dying, they are some people’s. And they deserve respect.

Colorado’s law will exclude everyone but those who are ‘almost dead’ anyway.

3. The person must be mentally capable of making their own healthcare decisions

At law, capacity is a presumed fact. That is a person is considered to be capable of making decisions about any number of issues, until they are proven otherwise.

In medicine, however, it is a lack of capacity that is presumed.

This means that capacity to make decisions must be proven. And it must be proven without doubt before that person will be able to qualify to use a law such as that being proposed by Colorado.

In a real life scenario, this presumed lack of capacity means that the person wishing to be prescribed end of life drugs (so they have an option in place) must prove to two different doctors (one a psychiatrist/ psychologist) that they are of sound mind.

This means the very very sick person must subject themselves to even more medical testing. And what for? They are going to die. This is simply so they can die ‘well’.

If they are not able to prove they have capacity (for example if they are depressed), they will still be terminally ill. They will still be on the trajectory towards a premature death.

The only difference is that they will be deprived of their Nembutal.

Is this good enough? We don’t think so.

4. The person must be fully informed of all their options for care, including pain management, palliative care, hospice and comfort care

This requirement has been a standard feature of all laws in this area, and dates back to the Northern Territory’s Rights of the Terminally Ill Act of 1995.

In reality, this requirement means that the person must be spoken to – perhaps in a childlike fashion – to ensure that their decision to decline further (often miraculous but high intrusive) medical treatment is one made in full knowledge of such options.

5. Two physicians must determine the person has no mental condition impairing their ability to make decisions and is free from undue influence or coercion

There is always the rumor that granny is being encouraged to die so the greedy relatives can inherit her house, savings etc.

At Exit over the past 20 years we have seen extremely little evidence of this. We are not saying that ‘elder abuse’ does not exist, but that it is not common.

The requirement for two doctors to sign off on one’s sanity serves to ram home Medicine’s message that you are not thought to have capacity to make decisions about your life and death until you have proven to two doctors that you do.

6. The person must be able to take the medication themselves

The requirement that the person must take the medication themself is something that even Switzerland demands.

The purpose of this requirement is to ensure that the act is voluntary and that a third party is not forcing death upon a would-be victim.

It is a reasonable requirement but it does rule out those who are not able to move.

For example, where does it leave a person with a disease such as Lou Gehrig’s (ALS/ Motor Neurone Diseases) and another neurological illness: conditions that rob a person of movement?

Does this requirement mean that such people must take the medicine while they are still physically able?

Yes it does.

A right to die law that brings death forward in time is hardly a good thing.

This is a significant drawback of the law being proposed in Colorado and in play elsewhere.

7. The person must be a Colorado resident

Ahh death tourism.

Colorado is just fine with tourism based on their famous great outdoors, they are not fine with out-of-staters flying in to die.

What are they so afraid of?

Only Switzerland allows non-residents to use their enlightened assisted suicide law.

8. The physician must offer the person multiple opportunities to take back the request for aid in dying medication

First step to use the CO law is that the person must be terminally ill with less than six months to live.

As problematic as this is, the law also demands that the person’s request end of life drugs (so they have control over their life and death) is further tested.

For God’s sake. The person is about to die anyway!

What sort of Indian Giver offer is this?

This requirement assumes that the only reason the person is still alive is because they haven’t yet got the means to end it.

If we are talking about a totally rational adult in the most advanced stages of a terminal illness are we not talking about a person who wants to hang in there.

A person whose decision about their short future has been a long time coming and is extremely well considered?

This is a ridiculous ‘safeguard’ and is testimony to all that is wrong with the medical model of assisted dying.

9. Two witnesses must sign the request form confirming that the person is mentally capable and the request is voluntary

More red tape. Remember we are talking here about a person who is about to die. It is not as if the person who is terminally ill with less than six months to live is about to miraculously get better.

Surely bureaucracy should be kept to a minimum?

Two witnesses? ‘Whatever’ the dying person will say.  If they can muster the energy and enthusiasm.

10. Wills, contracts, insurance and annuity policies are not affected by a person choosing aid in dying

Guarding against discrimination is an important goal. Ensuring one’s life insurance policies will not be affected, simply because one is electing to go a few months, weeks or days early is a good thing.

Summary

The model of law reform being voted upon by Colorado pure medical model on issues of power and control.

The patient must perform to the satisfaction of the physicians present. The doctors will decide who gets help (and dies ‘with dignity’) and who dies with no help and even less dignity (or even violently as that is all they can do).

The Colorado law provides no scope for those wanting the peace of mind that comes from knowing that one has lethal drugs locked away in the cupboard, just in case.

This is not a law that serves the vast majority of older folk who wish to have control over when and how they die.

The Colorado law is a law of last resort for those who will die in the very near future.

If these people are considered those most in need, then the law is a good thing.

It is directing resources to those who need them most.

But if end of life rights are considered more broadly, Colorado and California and Oregon and Washington and Vermont are all failures.

Under all these legal models, medical aid in dying is – as its name suggests  – a medical treatment

None of these laws serve the vast majority of the over 70s.

None of the laws bring any benefit to those who are not ill (now) but who wish to be prepared for the contingencies of the future.

Dying well – euthanasia – is not yet a civil right.

Is this reason not to support such ballots? Likely not. But beware.

As Law Professor Susan Stefan – author of Rational Suicide Irrational Laws (Oxford University Press 2016) has argued, ‘once you let doctors into our lives (and deaths) you will never be able to get them out!’

Colorado Poll showing 70% support

The Dutch Direction

In the past month, the Dutch Government has announced that by 2018 it will legislate  for older people who feel they have ‘completed life‘ to get help to die.

While the medical profession will still be the gate-keepers, the Dutch plans are a first step towards treating the good death as a civil right for all citizens.

All older citizens of sound mind regardless of their physical health will be able to request medical help to die.

Perhaps we should be asking the Dutch Ambassador to the US, Henne Schuwer, if the debate that Colorado and Washington DC are now having about end of life rights is what the Dutch had 10 years ago.

Would be interesting to see his reply.

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November 3, 2016

Should the Dutch extend euthanasia to the ‘well’ elderly?

Extending assistance to die to the so-called ‘well elderly’ is a topic that has long been of interest to Exit.

Indeed, it is one of the reasons that the Peaceful Pill Handbook is published.

In recognising ‘euthanasia’ – a good death – as a civil right, it is only logical that those with a terminal illness or unbearable suffering should not be the only ones to be able to die well.

A peaceful death is everybody’s right.

In stating that the Dutch law will be changed, the Dutch government is acknowledging this sentiment fully.

In Holland, this phenomenon is referred to as ‘completed life’.

That is, older people who feel they have lived a good and long life, are going to have the option to go at a time of their choosing.

While the Dutch are stopping short of legalizing the possession of Nembutal by the elderly, the model they are proposing is an interesting mix of the medical model (approval from doctors is needed) and the civil rights model (accessible to everyone).

The new extension to the Dutch euthanasia laws will be limited to the elderly. So this is not allowing teenagers or those in mid life to opt out.

Rather it is a typically pragmatic Dutch way of alleviating the cruelty that can be associated with forcing someone to live on past their chosen time.

Philip Nitschke’s mother Gwen was one such person who would have benefited greatly from a law like this. That is, if she had been Dutch (which she wasn’t).

Gwen Nitschke spent her last 6 years in an Australian nursing home.

And she hated it.

Even if assisted dying had been legal in Australia (which it isn’t), Gwen would never have qualified to get help to die.

Gwen’s problem was that she was not sick. She was just old.

Philip with Gwen on her 95th Birthday

Her friends had all died. Her looks and her mobility had gone. But every day she was forced to go on.

What was the purpose of living she would often ask?

And before you ask, no she was not depressed.

She simply thought she had completed her life and now was the time to go.

Last December, Gwen finally passed away after receiving terminal sedation and being in a coma for 3 days.

Hardly the dignified end that she wanted.

RIP Gwen Nitschke

Fiona Stewart

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September 25, 2016

Why the Belgians have it right

It will be twenty years ago this week since the Northern Territory passed the world’s first law on voluntary euthanasia.

The Rights of the Terminally Ill Act (ROTI) was a carefully-drafted piece of legislation that allowed a terminally ill person of sound mind to ask a doctor for help to die. The law expressly excluded children.

While the ROTI law only lasted nine months until it was overturned by a conscience vote in Federal Parliament, its legacy lives on in today’s debate about right to die legislation.

The flurry of enthusiasm in recent days by Victorian politicians means that a voluntary euthanasia law in this state is a sure thing. It is only a matter of time.

With this in mind, and given the news from Belgium of the euthanasia death of a terminally-ill 17-year-old – ie a minor/ child, it seems a good time to be asking ourselves what type of law we want Spring St to pass.

In proposing the NT law back in 1995, then Chief Minister Marshall Perron said that he did not want a law with safeguards so strict that the process of qualifying was a tortuous one.

Sadly, Perron’s fears were realised. At least according to Dr Philip Nitschke. Philip speaks often of the hoops that his four dying patients had to jump through in the process of qualifying to use the law. He says the ordeal almost killed them.

Do we want the same for Victoria?

Do we want to force dying people to spend their final days, using the little strength they have left dealing with red tape?

Where does the balance lie? Can we do better?

It was not only safeguard overload that marked the NT’s attempt at a law, the ROTI Act also excluded young people. Back then, the plight of teenagers was firmly in the ‘too hard’ basket.

This is despite the fact that young people get terminal diseases like cancer, and despite the fact that palliative care can often only go so far in relieving the awful symptoms that serious illness can bring.

It is not only Woody Allen who fears the way he will die, rather than death itself, the academic literature says the same thing.

The news of the recent euthanasia of the teenager in Belgium has re-ignited the right to die debate globally.

The Belgium Federal Euthanasia Commission has been reported saying that the terminally ill young person asked for euthanasia because they were in ‘unbearable physical pain’.

What is there to argue about.

Do we – as a society – insist the young person must suffer on, simply because they are under 18 years of age?

Or do we do the right thing and allow them some relief in their final weeks, days or hours?

When confronted with the facts of the situation in Belgium, I would argue this is a no brainer.

We wouldn’t torture our pets. We should not torture our terminally ill children.

When it comes to kids and euthanasia, the largesse of Belgium and Holland’s laws should not be underestimated.

These countries have not shied away from this pointy end of the right to die debate. Their humanity should be celebrated. And let’s not stop here.

What about the psychiatrically ill? This was another group excluded by the NT law.

Yet these people too can request euthanasia in Belgium and Holland.

Indeed, at the euthanasia conference that I am convening this week at the State Library, controversial Belgium psychiatrist Dr Lieve Thienpont is one of the keynote speakers.

Dr Thienpont’s work in Flanders in Belgium is almost exclusively in the area of euthanasia for the psychiatrically ill.

In Melbourne she will be talking about euthanasia for children, non-terminally ill older people (those who say they have had a good innings but now is the time to go) and the mentally ill.

While so-called pro-lifers will no doubt picket her appearance, I have found Lieve  to be a calm and gentle woman who has been prepared to stick her neck out on behalf of the most vulnerable in our community.

Those who other euthanasia laws turn their back on.

In this regard, Dr Thienpont has battled it out amidst the sensationalist headlines.

Even if you do not agree with euthanasia, the insights which someone of her standing and vast experience deserve a fair hearing before we allow debate to turn to arguments of slippery slopes and eugenics.

For the likes of Dr Thienpont, suffering is suffering regardless of age and irrespective of whether one has an un-treatable physical or mental illness.

If treatment, let alone cure, is not an option then why should we insist such people live on?

These are the difficult, but not iresolvable, questions that the Victorian Parliament is going to have to face if they are to bring in euthanasia legislation.

There are plenty of nay-sayers who will tell them it’s all too hard and to leave well alone.   But the Belgium experience suggests that euthanasia legislation can be broad and it can work well if preventing needless suffering is its aim.

Fiona Stewart, PhD LLB

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