Dangers for the vulnerable

June 25, 2019

Serious question: how do people who believe in minimising the power of the state reconcile that view with support for giving the state the power over the life and death of vulnerable people?

The Bill that seeks to legalise euthanasia would restrict its availability to people with terminal illnesses with less than six months to live.

Doctors can predict how long someone might survive, but they can be wrong.

A year ago a friend was told he had five months to live.

He has just bought a neighbouring farm and is about to launch a newly built boat.

He still has cancer but he is on a drug which has not only kept him alive but is allowing him to live a good life.

Eighteen months ago a friend emailed to say she was on the way to look after her grandchildren because their other grandmother was in the very last stages of life with hours or at best days to live. At the 11th hour she was given a new drug and she now has no signs of the cancer that was killing her.

These are true stories, Jacqui Dean who sat on Parliament’s Health Select Committee, which launched an inquiry in response to a petition calling for a law change to permit medically assisted dying in the event of terminal illness. heard more:

. . . I am opposed to euthanasia, with my resolve only strengthened after sitting on that committee and hearing the heartfelt testimony of hundreds of people who bravely faced death and the families who lost loved ones.

I heard some wonderful stories of love and tenderness, sad stories of heartbreak and loss, stories of great courage and inner strength, and through it all I had the utmost admiration for those who came before us to share their deepest fears and their greatest joys.

The Samoan grandmother who talked of the death of her father – a beautiful and moving family experience which she told us was gentle and loving and filled with prayer.

The woman whose husband was diagnosed with a brain tumour at 28, but who outlived three fatal prognoses and didn’t actually pass away for fourteen years.

This woman pointed out that no-one can predict the final outcome of a terminal illness, and she and her daughter were grateful that they never gave up and that the family got to share those extra years together.

And the blind man who had fought against adversity all of his life and wanted to encourage people to live in hope and not give in to despair.

There were stories of courage and strength, which reflected the best of the human spirit.

Stories from those who made it their life’s work to support the dying through palliative care, and submissions from groups motivated by strong beliefs around death and dying.

We also heard from those approaching the end of their lives.

This included a man, in his 40s who was dying of prostate cancer, who spoke with anger about his life being robbed. And others who said they feared death and wanted to take the pain away as quickly as possible when their time came.

There’s no doubt decisions made at the end of life are emotionally charged, highly personal and reflect circumstances and timing that vary from individual to individual.

The care that people get at this time can make a fundamental difference to people’s experiences.

For that reason, I support the power of good that hospice and palliative care services provide.

Dedicated and diligent guidance from these providers can assist terminally ill people to die peacefully and with dignity.

They believe that if people can come to a place where they can accept their end of life, it can have a huge impact on them and a lasting positive effect on their families.

I was deeply affected by the impassioned testimony the committee also heard from groups representing the disabled, elderly and the mentally ill.

Many of these people genuinely fear for the future if they become a physical or a financial burden on their families. They also questioned whether there could be circumstances where they may be manipulated or pressured into ending their lives.

This worries me deeply. If we legislate for the right to die, the negative impact on vulnerable groups will be huge.

In my heart I simply cannot accept that a law can be developed which will completely protect the vulnerable.

One of the most moving moments of the select committee process came when we heard from a Wellington man who said in the past he had been suicidal.

He recognised the grave consequences if euthanasia was made legal in this country. The option of taking one’s life would become much more normalised and he believed vulnerable people might make a decision that could never be reversed.

Our suicide rates are already too high – we don’t need death by choice as another signal that ending one’s life is OK.  . . 

The Select Committee that dealt with the Bill said it was unworkable. the doctors in the Care Alliance agree with them.:

. . . The Care Alliance, a charity which opposes physician-assisted euthanasia, has taken out a full-page ad in the New Zealand Herald.

The signatories endorse the views of the World Medical Association and New Zealand Medical Association, that euthanasia is unethical, even if made legal.

The letter says it supports effective pain relief and palliative care, and the right for patients to decline treatment if they wish.

But it says crossing the line to assist a person to die would weaken the doctor-patient relationship.

Dr Sinead Donnelly, who organised the letter, said the bill is unworkable.

“The message is that as doctors we don’t want to be part of it. You’re going to, in our view, destroy the profession of medicine by drawing us in to ending the life of our patients and two, the risk to the vulnerable is much too great.”

The letter has been signed by 1061 doctors, of the 17,000 registered doctors in New Zealand. . . 

The NZMA opposes the Bill:

It’s current chair, Kate Baddock said that had not changed and would not. 

“It would be impossible to craft a law that would completely protect people from sublte coercion and it’s also impossible to craft a law that means that people are totally competent,” she said.

“Therefore there should be no law, there should be no euthanasia.”

She is backed up by the Secretary General of the World Medical Association, doctor Otmar Kloiber.

“We have a huge and overwhelming majority that says no, this is not for us, and doctors should not be involved in killing patients,” he said.

“That is a very clear and very broad view which we have.”

Australian ethicist doctor Margaret Somerville spent 40 years in Canada and has nine doctorates, and said it was not over the top to use the word “killing”.

“This is a momentous decision, to say that you will allow intentional killing,” she said.

“You’ve got to be clear about what we really are authorising. This voluntary assisted dying – we all want assistance in dying. And then you give it to the medical profession, the healers in our society, it’s a radical change in our most fundamental values.” . . 

Lawyers have concerns too:

. . .Public lawyer Grant Illingworth QC said it was a very serious issue and mistakes about death and dying could not be undone.

“That’s why we abolished the death penalty in this country,” he said.

“The kind of legislation currently before parliament must contain safeguards that are so clear and so comprehensive, that any possibility of dying by mistake is excluded beyond a reasonable doubt.

“The statute proposed by David Seymour fails to meet that standard by a very wide margin in my opinion.” . . 

Life is terminal, but who can say when it will terminate?

It’s impossible to be precise about how long even very ill people might live and there are very real dangers in giving the state the power over life and death of vulnerable people.


What about the doctors?

August 30, 2016

Proponents of euthanasia argue that people have autonomy over themselves which includes the right to die.

They rarely look at the debate from the point of view of doctors who would prescribe lethal doses of medication or administer them.

At The Spinoff, Medical Association chair Stephen Child gives that perspective:

For many, the key discussion point is whether it is possible to write and administer perfect legislation that permits someone autonomy at the end of life without the secondary negative consequences of:

  • inappropriate deaths
  • reduction in quality of palliative care
  • normalisation of suicide.

Both sides of this debate will emphasise anecdotes, surveys or “research” demonstrating cases of potential intolerable human suffering, or cases of coercion/inappropriate decision making, resulting in potentially unnecessary death. . . 

The ethical standards of a profession often go beyond public opinion, the law and market demands, and may also differ from the personal values held by some individuals within that profession. The role of professional ethics, however, is not only to prevent harm and exploitation of the patient but also to protect the integrity of the profession as a whole. This often requires the professional body to fulfil a leadership role to ensure clarity and provide direction.

The NZMA, along with the World Medical Association and 53 national medical associations, holds the following positions on voluntary euthanasia and assisted dying:

  • We recognise the rights of patient autonomy, so we recognise the right for society to have this discussion. We also acknowledge that people currently have the right to end their own life and that this legislation focuses on third-party assistance with this act.
  • We recognise the rights of patients to refuse treatment or for the removal of lifesaving treatment, and that the natural consequences of an illness may progress to death.
  • We recognise the rights of patients to have good access to high quality palliative care services and we passionately advocate for improved resources, education, workforce and facilities to achieve this goal. We strongly oppose the current necessity for our major hospice facilities in New Zealand to have to raise half their funds themselves.
  • We recognise the patient’s right to have administered analgesia and sedation to relieve pain and suffering – even if a secondary consequence of this is the shortening of life. Morphine is not an agent of euthanasia, and will not by and of itself reliably end the life of a patient. These agents are administered to relieve suffering, applying a risk/benefit analysis similar to all treatments, with a shared understanding of the potential risks in their prescription.

It might look like dancing on the head of a pin but there is a difference between giving something to alleviate pain and suffering in the knowledge it could hasten death and giving to deliberately kill.

. . .  Many people, however, still find confusing the difference between the concept of administering terminal analgesia/sedation to a dying patient, and that of administering voluntary euthanasia to a patient with concurrently stable physiology. The difference between palliative care and assisted dying is well documented and clear. The World Health Organisation definition of palliative care includes the statement that palliative care “intends to neither hasten nor postpone death”.

In jurisdictions where euthanasia and assisted laws exist, concern is growing about the impact on palliative care, where those seeking euthanasia are referred first to palliative care for assessment. This has led to confusion in patients as to the role of palliative care and – in some instances – patients who are opposed to euthanasia declining palliative care services.

The profession as a whole has also echoed concerns about the accuracy of diagnosis and prognosis, as well as the lack of certainty around measuring the capacity of patients facing terminal illness, who often also have reactive depression, altered brain physiology from medications or metastases, as well as potential external coercion factors.

For the profession, as well as ethical considerations, physician-assisted dying raises issues of:

  • potential impacts on palliative care delivery
  • potential changes to a doctor-patient relationship
  • difficulties with adequate training, assessment and regulation of the profession
  • potential negative impact on health providers participating in such acts.

Principles of autonomy and self-determination are, of course, central to this debate. The NZMA respects and supports patient autonomy but is concerned about relying on these principles to enact euthanasia or assisted suicide. Principles of autonomy demand full knowledge of risks and alternatives, and consent must be free of coercion, duress or undue influence.

An absolute guarantee that those who choose assisted dying are doing it voluntarily would be extremely difficult to establish in legislation and ensure in practice. Doctors are often not in a position to detect subtle coercion – as is also the case when trying to identify signs of emotional or financial abuse of elders more generally. Coercion also extends to assumptions of being a burden, giving rise to a sense of an “obligation” to die.

Given the gravity of the risk involved for individuals where autonomy is claimed but cannot be guaranteed, the belief that autonomy should trump all should be viewed with caution. . . 

 

I gave doctors permission not to keep trying to save the life of our first son and seven years later asked them not to call the crash team when our second son stopped breathing.

Both had degenerative brain disorders and any treatment would have only prolonged their suffering and postponed their inevitable deaths.

If I faced the same decisions in the same circumstances I’d do the same thing.

That isn’t euthanasia though.

It’s also very different from an adult in full control of their minds who requests the right to die and I understand how the fear of  what might be ahead could lead someone to that decision.

But legalising euthanasia isn’t only about fully competent individuals who want the right to control their lives and deaths.

It’s also about others who might feel pressured to choose a premature end or who might forgo high quality palliative care for fear euthanasia will be an inevitable consequence.

And it’s about medical professionals and what it asks of them too.

In abridging the article from which I’ve quoted, I missed a paragraph on surveys carried out in Canada, New Zealand and the United Kingdom. Each survey showed while roughly 30% of doctors agree “in principle” with the concept of assisted dying only 10% would feel comfortable in participating.

That’s what is often missed in the debate. It’s not just about the right to die and the patients, it’s also about the right to kill and the doctors.

P.S.

There’s an assisted suicide table-talk in Auckland tonight:

Broadcaster and comedian Jeremy Elwood hosts the Ika-Spinoff.co.nz current affairs cabaret, Table Talk, on the subject of Assisted Suicide. Join panelists David Seymour MP, promoter of the End-of-Life Choice Bill; Dr Jan Crosthwaite, University of Auckland Proctor and formerly Department of Philosophy; and Dr Stephen Child, Chair of the NZ Medical Association for a free-ranging discussion of a topic that defies politics.

Enjoy the full & delicious Ika menu, join a table or book for a group. Doors open and bar and dinner service from 5.30 pm, the discussion will start at 7.30 pm.

Follow the discussion on the TheSpinoff.co.nz

WHEN
August 30, 2016 at 5:30pm – 10:30pm

WHERE

Ika Seafood Bar and Grill
3 Mt Eden Rd
Auckland 1023


Right to die is right to kill

June 5, 2015

Justice David Collins has ruled it is up to parliament to amend the Crimes Act to give doctors the right to help patients die without prosecution.

Lecretia Seales was unsuccessful in seeking a landmark High Court ruling to allow her doctor to help her die without criminal prosecution.

Justice David Collins released his judgment at 3pm which rejected her bid and said only Parliament can give her what she wanted. . .

Ms Seales died of natural causes at 12.35am this morning, just hours after her family and lawyers received the ruling.

The health of the 42-year-old Wellington lawyer with terminal brain cancer had deteriorated rapidly in the days since her court case last week where she was seeking a declaration that a doctor would not risk prosecution if they were to help her die.

Her family said they were “very disappointed with Justice Collin’s judgment. He found in our favour in relation to the evidence before him, but his interpretation of the purpose of the law meant he could not find aid in dying was available to Lecretia or inconsistent with the Bill of Rights.”

They added: “The judgment has starkly highlighted that the status quo is not ideal; that people are at risk of intolerable suffering and are at risk of ending their lives earlier than they would otherwise. Justice Collins was clear that it is for Parliament to address these issues. . .

The grief Lucretia’s family and friends will be dealing with will be compounded by their disappointment that the case which occupied so much of her final weeks was unsuccessful.

They might choose to honour her memory by campaigning for a law change.

None of us would choose to suffer nor to watch anyone we love suffer.

That suffering might not just be intense physical pain, it could be the loss of dignity which physical and/or mental deterioration can lead to.

But euthanasia is not just about people’s control over their own lives and deaths.

As I wrote on this issue six years ago:

. . . There might be a grey area now about pain relief which gets to the level where it could be fatal but there is a huge gulf between alleviating pain and deliberately killing someone.

If we ever consider our own mortality most of us would choose to die without pain and with all our faculties intact.

Life and death aren’t always that tidy and palliative care isn’t always optimal.

That is a very strong argument for better palliative care, not an argument for euthanasia. . .

Those arguing for euthanasia talk about the right to die.

Let us not forget that it would give doctors the right to kill.

UPDATE:

The judgement is here.

The family’s response to the judgement is here.


Caring for the dying

August 19, 2014

Life is fatal.

Sooner or later we all die.

Most would choose for it to be later,  peaceful and pain-free.

But life and death aren’t always that well-ordered.

It isn’t easy watching someone we love die and not everyone is able to give their loved ones the care they need while dying.

This is where hospices come in.

They provide a very high standard of palliative care in their facilities and in the community for people who choose to die at home.

Their care is not just for the dying but for those who will survive them.

Hospices help the dying live well for as long as they can then help them die well without either prolonging or hastening the death.

The success of the work they do provides a very strong argument against euthanasia.

Theirs is difficult but essential service and the funding boost National has pledged will help hospices and their staff do more.

 

Hospices make a huge difference to people’s lives, so National will invest an extra $20 million a year so they can do even more of their important work. ntnl.org.nz/1kA7vLl #Working4NZ

We’ll invest in 60 new palliative care nurse specialist and educator roles to improve training and support across aged residential care, GP practices and home-based support services. ntnl.org.nz/1kA7vLl #Working4NZ


Right to die or right to kill?

September 27, 2013

MP Maryan Street has withdrawn her End of Life Choice Bill from the members’ ballot.

The Bill was promoting voluntary euthanasia which is often called the right to die.

It would also give the right to kill.

It would give people, including doctors, the right to offer, provide and ultimately administer fatal medication.

I have twice given doctors permission to not resuscitate a child.

Tom was just 20 weeks old, Dan five years, both had degenerative brain disorders and both had stopped breathing when I was asked if I wanted treatment to continue.

That isn’t what this Bill is about.

Nor is it about pain relief as part of palliative care.

There might be a grey area now about pain relief which gets to the level where it could be fatal but there is a huge gulf between alleviating pain and deliberately killing someone.

If we ever consider our own mortality most of us would choose to die without pain and with all our faculties intact.

Life and death aren’t always that tidy and palliative care isn’t always optimal.

That is a very strong argument for better palliative care, not an argument for euthanasia.

Our lives are our own but the right to kill is a big and very serious step on from the right to die.

Macdoctor has several posts on the issue.


Right to die gives right to kill

July 23, 2010

When proponents of euthanasia talk about the right to die they omit to explain that it involves other people and would also give the right to kill.

Would health professionals who are bound by the Hippocratic oath to do no harm want to do that?  Is it fair to ask them to? Even if the answers to those questions were affirmative, how could we be sure decisions would always be based on medical and humanitarian grounds?

Macdoctor points out the dangers of a financial incentive to hasten the end of dying patients.

This brings me to the central problem I have with human euthanasia.

It is a cheap cop-out.

Least I be called insensitive in the face of Dr Pollock’s eloquent and  emotional letter, let me say that I say this entirely in the context of medical practice. I do not consider Dr. Pollock’s desire to die rather than suffer a “cop-out”, I consider the legalisation of euthanasia to be a cheap (and nasty) alternative to adequate palliative care. And therein lies the chief dilemma.

Governments being what they are, as soon as euthanasia is legalised, there will immediately be a subtle drive to euthanase dying people.

 Would it be possible to have safe guards that ensure that those who wanted to opt for voluntary euthanasia  could without the danger that others would feel pressured into it?  They may feel they have to opt for an early death, not for their own sakes but that of their family and friends or even because they felt they were using scarce resources and wasting the time of the people caring for them.

Most of us think if we were severely disabled we would opt to forgo treatment, but would we?

Theodore Dalrymple writes of a man whose life support was about to be turned off until he blinked:

Mr Rudd, 43, was injured in a motor accident. He was paralysed and thought to be severely brain damaged. . .

However, taken to the neuro-intensive care unit at Addenbrooke’s Hospital in Cambridge, he was kept alive by the miracle of modern technology, without which he would undoubtedly have died.

His close relatives and doctors thought that the life he now had was not worth living. They prepared to turn off the machines keeping him alive. They thought this is what he would have wanted. It is also what most of us probably would have thought too.

At the last hour it was noticed he was able to move his eyes and that by doing so he could communicate a little. And what he communicated to everyone’s surprise was that he wanted to continue to live, even the life that he was now living. In other words his relatives and the doctors, with the best intentions in the world, had been mistaken. . .

That would have been a fatal mistake.

Dalrymple goes on to explain about Quality Adjusted Life Years (QALY) and how that measure could influence treatment.

Health policies are often decided on the basis of QALYs. Interestingly and alarmingly the QALY assumes that the life of a quadriplegic (someone paralysed from the neck down) not only has no value for the person who lives it but has a negative value for him: that is to say such a person would rather be dead and in fact would be better off if he were dead.

Whatever they thought before they were paralysed, however, most quadriplegics think their lives are worth living.

With a few exceptions, such as the young rugby player who was accompanied by his parents to Switzerland to be able to be given assistance in suicide, they don’t want to die. The fact that before they were paralysed most quadriplegics thought (as most people, including health economists think) that life as a quadriplegic would not be worth living but change their minds once they are quadriplegic, has very important implications for the idea of living wills.

In fact it invalidates the very idea. It is impossible to decide in advance what would be intolerable for you until you experience it.

When discussing this situation most of us think we would choose death rather than a life with severe impairments, but how can we know how great the desire for life, or death, would be until we are faced with making a choice?

When euthanasia is spoken of, it’s usually described as providing a merciful end, but would we feel the need to hasten our deaths if we could have a painless and natural one instead?

Dalrymple raises another problem. If we did legalise the right to kill, where would we draw the line and how would we stop it moving?

One of the problems with assisted suicide and euthanasia is what the Americans call mission creep. We live in non-discriminatory times: why should only certain categories of patients have the benefit of what Keats called “easeful death”? Indeed, when euthanasia was legalised in Holland it was not long before a psychiatrist killed a patient with supposedly intractable depression.

Why should only the terminally ill and the quadriplegic have the right to assisted suicide or euthanasia? Do other people not suffer equally, at least in their own estimation?  An old saying goes that hard cases make bad law and it is also true that there are pitiful cases in which a quick death would seem a merciful release.

Unfortunately it is well within the capacity of carers to make suffering unbearable and therefore death seem the preferable, quick and merciful option. And if people have a right to death on demand then someone has a duty to provide it, otherwise the right is worthless, a dead letter.

Who is this person who has such a duty? Will we strike off doctors for refusing to kill their patients? This is something that the indomitable Mr Rudd would not approve of and I think he deserves to be heard.

Euthanasia is not the same as choosing to forgo treatment. It is not passively letting someone die or even giving pain relief which might have the side effect of hastening death. It is actively killing and if we give the right to do that how can we be sure it wouldn’t be misused?

Rather than agitating for the right to die we should be agitating for the right to live with dignity and without pain.

The right to die sounds like control is in the hands of the patient and I struggle to see any difference between that and suicide.  But euthanasia is much more than that. In legalising the right to die we’d also be legalising the right to kill.

UPDATE:

Lucia Maria aat NZ Conservative has similar concerns in  euthanasia raises it’s ugly head again.

Dim Post is cautiously in favour of legalising euthanasie but also sees the dangers in death panels.

goNZo Freakpower supports legalisation in any last requests,

So do Brian Edwards in the doctor and the right to die and Richard McGrath at Not PC in Cancers – personal and parliamentary.

Lindsay Mitchell asks what happend to the death with dignity bill?


Life’s fatal

September 22, 2009

An Australian man who won a court case allowing him to refuse food and water has died.

Rossiter, who broke his spine in 2004 in a road accident and was left a spastic quadriplegic after a fall last year, had described his life as “a living hell”.

In mid-August, the Australian state Supreme Court ruled that Rossiter’s nursing home in the west coast city of Perth must respect his decision to starve to death. . .

         The case shed light on a gray area in Australian law: patients have a right to refuse lifesaving treatment but helping   another to commit suicide is a crime punishable by life in prison.

Some may feel the law is dancing on the head of a pin here, but there is a significant difference between killing people and withdrawing, or not giving in the first place, treatment which allows them to die.

Macdoctor discussed this in  To treat or not to treat :

One last comment. The withdrawal of pointless treatment from a patient has been described as “medical euthanasia” or “passive euthanasia”. I don’t believe for a second that this has anything to do with euthanasia at all. Euthanasia is the active termination of the life of a person. In this country it is also known as murder. The passive termination of a life by letting nature take its course has another name. It is called death.

I have twice been asked to make the decision on whether or not treatment should be given for my sons.

Both had brain disorders. The first, Tom, was just 20 weeks old. He hadn’t passed any of the developmental milestones and had spent nearly a third of his life in hospital.

When he stopped breathing in the middle of the night we revived him and went in to Oamaru Hospital where the doctor asked us how aggressive we wanted to be in treating him.

We said if it came down to treatment which was only delaying his inevitable death we’d prefer to leave him be. He was transferred to Dunedin Hospital where a medical team spent a considerable amount of time trying to help him. Finally, the senior doctor turned to me and repeated the question we’d been asked in Oamaru.

I gave the same answer and a few minutes later, Tom stopped breathing.

Seven years later I faced a similar decision over our second son. Dan had a brain disorder and he too had passed none of the developmental milestones. He was five but could do no more than a new born baby. He had a hernia and reflux which required surgery. He contracted an infection a few days later and stopped breathing.

The doctor was going to summon the crash team but I told him Dan’s paediatrician had advised us if something like this happened we should leave him be. The doctor asked me if that’s what I wanted and I said yes.

These cases are different from that of the Australian man, but the principle of the right to refuse treatment, yourself or on behalf of your next of kin, is the same.

Life expectancy has increased and so to have our expectations of medical treatment. But there are limits to what health professionals can and should do because life is fatal.

One of the guiding principles in medicine is first do no harm. Sometimes letting nature take its course so people die, with the physical and emotional support they need to make it as painless as possible, is the best way to do that.


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