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Letters written in support of the End-of-Life Choice Bill

Waikato Times, Oct 2013

Dear Madam/Sir
A few weeks ago you wrote an editorial concerning end of life choices, or as you put it, euthanasia (16 Oct 2013). You said that my bill, the End of Life Choice Bill, would have triggered a necessary and thorough debate. You asserted that I had buckled to party pressure in withdrawing it from the ballot and suggested that I did not have the fortitude Louisa Wall MP had in the pursuit of her Marriage Equality bill, which is now law. Timing is everything. I remain as committed as ever to giving people who are terminally ill or whose lives, through irreversible conditions, are by their own assessment (no one else’s) unbearable, the right to access assistance to die at a time and in a manner of their own choosing. My concern is that in election year, sensitive issues such as this do not get the thoughtful treatment they deserve. It is a sad reflection on all MPs that this might be so, but it is my judgement. I will bring my bill back and it will pass, of that I am certain. Unhelpful timing is different from a lack of courage.
Yours sincerely,
MARYAN STREET MP (Author of End-of-Life Choice Bill)New Zealand Herald, Aug 2013
It is my belief that we define our own dignity and the essential aspects for my dignity may not be shared by others; nor would I wish to impose my standards on them.
In leaving the decision solely to doctors to judge whether life has quality we are asking one person to make a judgement. Surely it is the sufferer who knows their life, their pain, their existential suffering better than any observer?
While I welcome and appreciate hospice and palliative care as a choice for those who choose it, it does not always provide the relief that some desire.
Even some palliative care specialists recognise that only death will bring a relief to suffering which cannot be alleviated by medicine. There are also palliative care doctors, with different religious/moral beliefs  who impose  a regime which will indirectly cause death through sedation.
The safeguards set down in the End-of-Life Choice Bill protect the vulnerable in society while giving choice to those who are in a position which we hope never to be in.
Jill Summerfield, Remuera
Kai Tiaki, journal of the New Zealand Nurses Organisation, Nov 2012 
Dear Co-editors:
It is with concern that I read the Viewpoint article on the End-of-Life Choice Bill by Julie Maher (Kai Tiaki Oct 2012).
Whilst I commend Ms Maher for her passion and dedication to Palliative care I do not believe it is the only option, and feel many of the opinions made are vaguely misguided. Inflammatory statements such as “This is a public safety issue requiring urgent action by nurses” are neither useful nor true. One can make a good argument that where good legislation legalizes aid-in dying, patients, families and the professionals who care for them are much safer.
The implication that Nurses are going to whip around and give lethal injections to vulnerable little old ladies is scare mongering at its finest! That is not what the Bill is about. It is about patients with terminal illness having options, opinions and control over their remaining life.
Whilst palliative care may be very good in New Zealand it is neither available, nor does it work for everyone. Ms Maher suggests “The law must not be changed in response to a small number of high profile, challenging and tragic cases”. My question is, why the hell not? Do these people who, either cannot or choose not to access Palliative care not deserve the right to die in a manner that they are comfortable with? Also, she fails to note, that according to the latest Horizon Poll, about 2.1 million New Zealanders know or have known someone whose life became unbearable before they died. Just because many of these cases did not feature in the press, it does not mean they are not important.
I think the key word in all of this is Choice. Under the Bill, Nurses and or Doctors have a choice as to their degree of involvement.  A huge component of the bill deals with Coercion, that no one be coerced into assisting with the termination of life. That no one be involved, unless they choose to be. For many in the medical profession, be it Doctors or Nurses, this may be a very difficult decision to make, and must be made without duress.
It is already legally acceptable for a Doctor to order drugs be given by a nurse that will relieve the patients suffering. Palliative or Terminal sedation if you will. How many times have medical staff been put in a position where they know said sedation will most likely kill the patient. Many, would be my guess. Terminal sedation is not an automatic right, rather is left to the discretion of medical staff and may well be administered at the request of family with little or no input or consent from the patient. This scenario surely must lead to instances where we are placating the family rather than necessarily only focusing on the needs or wishes of the patient (coercion or not, you decide).
We already have under the NZ Code of Health and Disability Services Consumers’ Rights the ability to refuse treatment. We are “allowed” to stop eating, decline medical treatment, explore and try alternative therapies and legally commit suicide. Under this scenario those patients with terminal illness who cannot or choose not to have palliative care can, starve to death, stop taking their medications, tie themselves to a tree, covered in honey or shoot themselves, all in a bid to end their life Yet we do not want the same consenting adults to make an informed choice to access medical assistance to hasten death in a manner that is acceptable to them as individuals. The old adage “Do not judge me until you have walked a mile in my shoes” surely rings true in this circumstance. It is important to distinguish between unbearable suffering and unbearable physical pain, the latter can often be addressed, the former, seldom.
Don’t get me wrong I am not suggesting “Knocking off” terminally ill patients at the drop of a hat. I am merely suggesting the End-of-Life Choice Bill may be just that: another choice.
Anne-Marie Wilson, R.N., Hastings

Otago Daily Mail, Feb 2012

It is well known that the palliative care movement in New Zealand opposes euthanasia, although it accepts terminal sedation. This is the practice of removing life support including food and water and keeping the patient sedated until he/she dies "naturally", taking anything from minutes to weeks. In my mother's case it took nine days, during which time she floated in and out of awareness as her organs slowly decomposed. It was the best the hospital could offer, given that the active hastening of death which was most emphatically what she wanted, is not legal.
As admirable as palliative care practitioners are, I find there is something disturbing in their zealous obsession that a patient whose life philosophy is different from their own, needs re-education on their deathbed.
Such a patient must, according to Prof Ilora Finlay, be a "control freak" or they must have been subtly coerced by family and society to consider themselves "burdensome".
They now need to learn that they are valued - as proven by disregarding their wishes. If only palliative care practitioners could accept their patients as they are, they could do even more good than the considerable good they already do.
The palliative care movement has actually benefited from the introduction of voluntary euthanasia legislation in other jurisdictions. In Holland, Belgium, Luxembourg, Oregon, Washington and Montana, the process of assisting a patient to die must start by law with a referral to palliative care as a first option. The same requirement forms part of Maryan Street's End of Life Choice Bill.
Prof Finlay says, "The rate of physician-assisted deaths had also risen significantly in Oregon" (since legalisation 10 years ago).
In fact, medically assisted deaths are less than 0.5% of total deaths in Oregon according to Yvonne Shaw, the former administrative director of Compassion and Choices of Oregon. Quoting Ms Shaw, "The referral rate in Oregon, renowned for having excellent hospice and palliative care, is about 60%, but among those who seek PAD (Physician Aid in Dying) the rate burgeons to 95%, simply because when people call to access Death with Dignity, they are referred to hospice for pain and symptom management even as the initial requests for physician appointments are being organised."
In Holland, Belgium, Luxembourg, Oregon, Washington and Montana, medically assisted euthanasia is accepted by palliative care practitioners as the ultimate palliative measure for those patients who will be satisfied with nothing else. Practitioners report that for some patients, just knowing that they can call a halt to their suffering if it becomes unendurable is in itself palliative, even if it is never requested. How much more understanding of human psychology is this than the outright rejection of the patient's viewpoint?
As Prof Finlay says, in the Netherlands one in 45 of all deaths is now physician-assisted. This equates with 2.3%.
In reporting these statistics, the website of the Royal Dutch Medical Society posts, "The vast majority of these causes (81%) were people in the final stages of cancer with the euthanasia usually performed at home by the family physician."
Recent research on the topic of suggested increase in the practice of euthanasia due to its legalisation was published in The Lancet on July 11, 2012.
The six co-researchers write, "In conclusion, eight years after the enactment of the Dutch euthanasia law, the incidence of euthanasia and physician-assisted suicide is comparable with that in the period before the law ... Euthanasia and physician-assisted suicide did not shift to different patient groups and the frequency of ending of life without explicit request continued to fall."
So it was being done before legalisation. It is still being done after legalisation at the same rate and for the same reasons, except that now the patient can be openly consulted and the doctor is protected from litigation provided the patient satisfies the eligibility criteria.

If you think that the Dutch pre-legalisation situation does not happen in New Zealand, think again. Doctors can and do hasten death. They do so at their peril and at their discretion, because voluntary euthanasia is not yet legalised.

Ann David, Picton

Marlborough Express, Feb 2011

So the election is on and the courting of constituents will begin.

I wonder which politician will make a stand for the legalisation of voluntary euthanasia.

It is what the overwhelming majority of New Zealanders say they want, but the political will is cowardly and inert.

As I write this, I am thinking of an elderly friend who is slowly dying of incurable cancer. He has been given between one and three months to live.

He knows that the end will be frightful as he loses control of his bodily functions and suffers the humiliation of having to be wiped and nappied like a baby, vomiting, choking, losing breath. There will be extreme pain, exhaustion, terror and nausea.

There is absolutely no hope of reversal of his disease.

He would like his doctor to help him die peacefully, right now, in the arms of his wife while he still has his humanity and dignity intact, but the law does not allow this.

Instead, he will be forced to endure prolonged physical, emotional and mental agony until he reaches his tortured end.

His best hope is that he will find a sympathetic doctor to administer ever increasing doses of painkiller until, eventually, by timing it so that the sedation doesn't look too "suspicious", he dies of the overdose.

This hypocrisy is allowed by law. It is apparently called the "law of double effect" – the doctor's intention was pain relief, not death.

But a simple, outright end at the time of the patient's choosing? No way.

I would like politicians to courageously address the pressing issue of legalising voluntary euthanasia. It is well overdue.

In other countries, it has been in place for years with never a hint of abuse because the controls are sufficient to prevent it. If it can be done in Europe and the United States, why is it impossible for New Zealand?

Here are just a few of the legislative controls that exist elsewhere:

The only life you can request an end to is your own and the request must be made by you personally. Your relatives can't request euthanasia on your behalf; that would not be "voluntary".

You only qualify to request voluntary euthanasia if you are an adult, of sound mind, suffering from a terminal illness or a permanent condition that you find unbearable and that is known to be irreversible. Unwanted children, lovelorn teenagers, the mentally handicapped, patients with depression, dementia and the like do not, therefore, qualify.

Your situation is verified by two independent doctors, one of whom must be a specialist in the disease or condition that afflicts you.

Your request must be made repeatedly. It is not enough to express a wish for death in a throw-away comment.

Every day that passes without action is a day that sees dozens of patients screaming for relief and being denied it by our politicians.

If no politician will begin the debate, let's have it in the newspapers. Please speak out; what do you think?

Ann David, Picton

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