A Moral Example?

As one who for most of his working life was heavily involved in church administration of one kind and another, I feel for our sister Church Leaders who are receiving devastating publicity all around the world for past behaviour among some of their agents. With their leaders, I regret that such actions were often covered over by the religious hierarchy. Only a very authoritative regime could survive the public odium currently in the air. Many another less organised religious community has fallen over for much less public disfavour or ridicule. It must be galling to have to swallow so much humble pie at once.

Given these difficulties for the Roman Catholic community, how is it that their leaders in this country can feel they have the moral authority to project their theological and ethical views on the whole of society in another area of human behaviour?

• It is an open secret that Catholic parishioners were instructed by the Bishops to write to both the recent Parliamentary Committees hearing submissions on End of Life issues.
• It is also known that the bishops also urged their people not to admit to being Catholic because the Church's image in the community is not too hot (Now there's a funny thing....).
• And it is on the public record that the current Justice Committee received around 27,000 submissions that were not much more than a name and an address and a sentence such as "I am not in favour of the End of Life Choice Bill". 

As if this attempt to manipulate the Hearings process is not enough, statistically ignorant people like MP Maggie Barry can reiterate in public again and again that this expression of opinion - devoid of any argument - means that 85% of people in New Zealand are "against the proposed Law."

How can they make such a claim? Will Parliament go along with this astonishing analysis? I'm no statistical whiz but I know that you cannot draw conclusions about the wishes of any population from a self-selected group who may have an axe to grind and want to lay their views on everyone else.

The fact is that the population has spoken. Every professionally conducted poll in this country for decades has produced a majority of respondents in favour of some form of Medical Aid in Dying. The latest was around 76% in favour.

The proposed Bill is not perfect but it is a cautious step forward. Anyone who wants to express doubts about it should read the wording before commenting. And Parliament should get on with doing the best it can for the majority. All we ask for is the one thing conservative churchmen and others are at great pains to deny us: CHOICE.

It could have been worse....

So Susan Austen has been fined $7500 for importing an illegal drug. At least she was let off other charges of assisting a friend to end her own life. Susan's been a compassionate but forthright campaigner for the right to have some control over the manner of one's death in certain conditions. If they invite contributions to her fine Bev and I will be happy to send something along.

We need to support the proposed change in law so we can take back control of our own life and death at the end. At the very least the intended law would end the ridiculous 

and illegal charade that was associated with Susan's adventure...  So far, the Police and their wrongful use of a traffic control point have got off lightly!

Submission Time

I am spending a lot of time drafting my submission to the Parliamentary Select Committee on Justice.

This Committee is dealing with the David Seymour Bill on End of Choice. It was well received by Parliament and sent to the Justice Select Committee to hear submissions, do necessary research, consider the issues and bring a report back to Parliament in due course.

My strategy is to first support the Bill in its basic purpose, to provide some opportunity for a very carefully assessed group of people to ask for assisted dying. The nonsense issues raised by some objectors are carefully addressed and it includes very precise conditions in which medical aid in dying can be achieved where it is found to be appropriate. That would be enough.

But there are three issues in which I am asking for some change or addition to the Bill.

One is about the informal suggestion that the whole debate be deferred until a general referendum is held on the matter. This seems totally unnecessary considering the huge support the general principle has received in so many professionally conducted polls over the last couple of decades. There is no evidence that the mood of society is turning away from its wholehearted support for the need of some kind of assisted death.  Asking for a referendum is only a delaying tactic from the opposing minority.  And from a purely personal point of view, the delay involved would be likely to mean that any change in the law would come too late to benefit me in a death that has some promise for considerable pain and loss of dignity.

I would like the Bill to be amended so that I could apply and be assessed for medical aid in dying before actually setting a date for my death. I think there should be a period in which I could have the permission approved - and the prescription in my hand -without the condition that I am going to use it in the next few days or return it to store. I would like to continue living as long as possible, even in considerable pain, but I would like to have the assurance that, should I need it, the medication is right to hand. The Bill does not provide such certainty. Other jurisdictions have done this well.

Thirdly, I am extremely disappointed that the Bill does not provide for any form of End of Life Directive. The application for doctor assisted death can only by made by a patient who is fully conscious and understands clearly what he or she is requesting. I believe that if a patient, in full knowledge of the issues and with a good grasp of reality, prepares and signs an End of Life Directive and has this formally registered then if the person falls into unconsciousness, the provisions of that Directive could be applied. Medical assistance in dying could then be provided. As it stands, this Bill is woefully inadequate in the omission of such provisions as were included in the Maryan Street Bill which received so much support a couple of years ago. I will press the Committee to try to improve this aspect.

But, at the end of day, the Bill is at least a firm step forward. Its prompt passage into law will be welcomed by the small number of us who might find ourselves seeking help to end an intolerable existence in the next two or three years. Let's get it into law...

Here's the link for making a submission. They're due at midnight on Tuesday 20 Feb.

Submissions on the End of Life Choice Bill 

After three or four weeks on a "Come back New" cruise which left me with a very bad chill I am still only on half-steam and trying to get a start on my submission to the Justice Committee on the David Seymour End of Life Choice Bill.

One of the things that I really admire in some of the jurisdictions which have put in place some form of physician assisted dying is that they permit the prescription to be written in advance of when it may be used. The patient then has the certainty of knowing that they have the opportunity of initiating a peaceful death. But the evidence is that up to half of them do not fill the prescription.

The sense of comfort and certainty in this process really appeals to me. I can understand how one might sleep better and handle the pain better knowing that an ultimate solution is already in place if it is wanted. 

I am wondering if we can get something along these lines written into the proposed bill.  It seems a few fairly simple alterations would make this possible. I'm no drafter of law, but does this principle make sense to others?

The Ca Pros Report for Jan 2018

Not a very pretty result this week. My PSA is up from 41 to 60, the highest it's been for a year or more.

However, I have to confess that somehow in the packing process for our cruise, I didn't take along my Zytiga and in spite of great cooperation from our neighbour Brian and NZ Post, I didn't have them until we'd been to Sydney and back to Dunedin. Given its previous rate of doubling, the figure of 60 seems to be entirely what one would expect for eight or so days of no medication, so no surprises. Now we're plodding on with the pills and hoping for the best. But I really should be spanked.

Just before we went away I did a fascinating interview for a Univ of Otago study on the end of life opinions of people who are terminal. The draft of our conversation has just come back and the transcriber seems to have added ("laughter") to almost every comment on some 25 pages of script. It was certainly a lot of fun. As well as opening up some areas of thinking that I needed to turn over... It is good to be able to deal with these issues in a whimsical frame of mind. May it ever be so.

And I've just had a chat with Kirsten from somewhere down south who phones me up every month or so at the expense of the supplier of Zytiga. She gives them feedback on how I seem to be coping with the stuff - it's always an interesting chat and I am impressed that the company can go to the expense of keeping in touch with people who are using its product. So far, all my experience has been very positive but I guess they won't be pleased to hear that I missed more than a week on it...

Now, the big effort is to prepare a submission for the Justice Committee on the End of Life Choice Bill which is now at the discussion stages. I brought back a major cold so life here is only slowly resuming its normal course.  In fact I think I'll now go and have a Nanna Nap for a bit...


But, first, if you're so minded, here's the info on making a submission:
Submissions on the End of Life Choice Bill can be sent to the Justice select committee, by email, letter, or online. Submissions close on February 20, 2018.

A great word from Jack Havill

In today's Herald, an excellent article from former End-of Life Choice President Jack Havill refutes opposition arguments in economical and very readable prose.

He has more patience than I have with people who choose to make absolutely ridiculous claims about issues which they have evidently never critically examined and then proceed to shoot down their own scarecrows.

Just two days ago a friend said to me, "But what about this awful provision for an 18 yr old to ask for assisted death?" He didn't know about all the required conditions... Just saying I don't want to live isn't in them.  I emailed him the relevant text of the Bill today.

This debate will need patience and a dedicated passion for truth and justice. We have to get past the technique of distorting what the other side says and then cleverly shooting down our own distortion. Havill's article provides significant illustrations of this style of argument. It has a sense of grace which I covert for the submission which I have to make in the next couple of weeks.

A Challenge to Hospice

 Three or so years ago our local hospice ran an appeal based on the claim that some of their patients were dying in pain because there was not enough money to buy effective medication. The appeal letter could not be found when I asked for a copy a few months later. And, of course, it was not entirely factual. A year or so later the then Prime Minister asserted that “We don’t need Voluntary Euthanasia; we have hospice”. 

That, too, was a bit naive. We know now—as I personally found out after surgery a few years ago— that not all pain can be controlled. Indeed the World Health Organisation suggests that up to 25% of pain may be untreatable. So the palliative care movement cannot be expected to deal with all pain. And the dilemma for the hospice movement is what can they do with patients who unhappily fall into that category?

My answer would be that hospice should think about embracing the medical aid in dying movement for such patients as wish to avail themselves of it. I know all the traditional Hospice arguments against such a course. It would involve a sea change of thinking. But studying the values and aims of the hospice movement I can now point to a lot of hospice principles that could be honoured by taking palliative care to its logical conclusion in every case, instead of only in five out of six patients.

Respect, dignity and compassion are values that apply as well to a good programme of medical aid in dying as they do to palliative care. And, perhaps, at the end, for some people for whom pain is uncontrolled and who choose for another option, they apply more to the former than the latter.

Where could we find a more appropriate organisation to offer the qualities of nursing and pastoral care, support and judgment that will be required when Parliament has passed an appropriate law?

Another "flag" Referendum?

I understand the challenges facing the parliamentarians who have cobbled together enough agreed policies to hold the government coalition together. But I am dismayed that among these compromises is the possibility that we might have a referendum on End of Life Choice. This must be seen as nothing more than a delaying tactic. It will provide no dramatically new information at all.
    
Of course, polls are never precise predictors of a formal vote, but the last few polls on the issue have received support of up to 75% in favour of some change in the law. The poll running on Stuff this morning is 78% in favour. There's not much doubt about what the majority of NZ voters would like. Indeed, many of them would go much further than the proposed Bill.

Join the poll here.

I am gratified that the House will at least discuss the merits of the Referendum before proceeding. And it's good that the Referendum decision itself can be a conscience vote. Perhaps wisdom may prevail. Members on both sides of the issue will have the memory of $27 million spent on a flag referendum that came to nothing.

Just get on with the David Seymour Bill that is already on the table.

Bits and Pieces

Since Vodafone disinherited my long-standing email address this blogger has been struggling to get on line again...

Meanwhile, we had a great two weeks away with family in Upper Hutt and Blenheim and enjoyed World of Wearable Art in Wellington. Since we got home the TV has blown up and we have let the Forester go and are settling down to life with the five year old Nissan Leaf which is a great pleasure to drive as well as a useful contribution to the environment - and, let's face it, extravagantly cheap to run.

I've had another monthly test result and my PSA is steady at 57 or so and I am having no major side effects with Abiraterone so it seems to be doing what it is supposed to. Off to Med Onc again in a few days... Nothing is forever, but for now, our quality of life is pretty good and I am applying myself to some useful projects - helping one of our residents to get access to an online audience about her remarkable experience with treating Parkinson's Disease... tidying up an inventory of stuff owned (or thought to be owned!) by our Residents' Committee... planning more writing on End of Life Choice - now that a new Parliament is (almost!) in place and David Seymour's Bill will have its first reading next year...

I see my post of 12 September was a bit critical of Simon "Turkey" O'Connor and the report of his earnest but fatally flawed Parliamentary Health Committee. To not make a distinction between suicide and voluntary euthanasia is unbelievable. What a waste of time and effort. I was very gentle compared with what some others are saying about O'Connor - one person even suggested this lack of intellectual integrity presages the end of his parliamentary career. However, it does not necessarily follow that his Committee will be designated to consider the Bill if it passes the first reading. One would hope for a better, fairer hearing next time - even we all have to do make our submissions again.

A Lost Opportunity

There's going to be no trip to Whangarei.
I was looking forward to an opportunity to dialogue with "Voice for Life" supporters next month.
They set up an event with two speakers from each side of the voluntary euthanasia  issue and a forum and open discussion. I was nominated to be one of the speakers on the side of - guess what! - End of Life Choice.
But it seems their main speaker on the Voice for Life side cannot attend at that time, so they have cancelled the event. A palliative care specialist, he was to come from Queensland. Could they not find someone to step in at a month's notice? And could they not find someone in this country to support their case anyway?
I am disappointed because I had looked forward to the dialogue. It's not as though their position is without credibility. There are large numbers of people in churches and in the medical profession who have real problems of conscience on the issue of what they regrettably call "Euthanasia". I don't want to disparage or ridicule their point of view. But I would have relished the opportunity to clarify and understand more of the issues, on both sides, for "undecideds".
And I suppose I might have sneakily enjoyed challenging the expert about how he might "palliate" the major paralysis that is likely to be the way my life will end.

But my genuine disappointment is that I won't be able to explain that I just want the rest of us to be able to make the "Choice" that they already have the freedom not to have to make.

I see the Interchurch Bioethics Committee is "disappointed" that Seymour's End of Life Choice bill has popped up in the Parliamentary ballot box. Well, I don't share their disappointment - I am overjoyed.
However, I appreciate those of their concerns which are based on realities. I hope, with them, that we will move through this process with dignity and precision, taking care to listen to all sides.
But to plead that the whole matter be held over indefinitely is failing to read the mood of the country. Parliament is already setting us a great example in hoping the matter will go away. Contrary to what they and the ICBC think, this matter is already an election issue and we need to make the best use of it that we can.

A Lucky Dip

David Seymour's bill on "end of life choice" has been drawn from the Parliamentary Ballot box. It has lain there for two full years and the luck of the draw was the only hope that Parliament would even discuss the issue.
Though neither of the major party leaders is keen to have the debate it is now likely that Members will have to at least consider it in the fading weeks of the parliamentary term. And now that the bill is on the table there is no way it cannot now be an election issue.
The annual meeting of Auckland district's Voluntary Euthanasia Society/End of Life Choice is tomorrow, and the national annual meeting is a week later, also in Auckland. Both meetings will be enormously encouraged by this news. I'll be there to share the satisfaction and plan some strategy.

Submissions - and the Debate

Big day yesterday. 

We left home close to 1pm and arrived at the Hearing Venue at 3pm, an hour early, to get the feel of the proceedings. However, very wet weather had obviously disrupted the hearings and I was called nearly an hour early.

The two women Committee Members in our room were gracious and really helpful to some of the less confident submitters. We stayed for an hour or two; and it was fascinating to hear the different points of very personal views. Consistent with the overall submissions, the opinions ran about 2:1 against any law change.

But in a break I had a short chat with a young lady on the other side. I suggested that agreement would never be reached on the issue itself and she realised that she’d never thought about that. She probably wasn't going to change everyone. So she then saw she had to consider whether we should change to law to allow for natural differences exactly because there is no agreement. That's what Choice is about.

The most moving moment was when our room finished and about four of us went into another room just to watch. (The Committee was taking hearings in three separate rooms—250 five-minute submitters between 9am and 6pm!). One lady broke down before she could begin her talk and another one from our room went and sat beside her and held her hand. What neither realised at that moment was that the supporter was on the other side of the issue...

Apparently that spirit did not always prevail. One or two people felt that their reception among the audience was a bit hostile. One person at least happened to be in a situation where her voice was the only one on her side and she felt distinctly discouraged. Some of this could have been prevented if everyone had been given more notice of the hearings (mine was only four days!) so that supporters could have attended.

But on the whole, this experience of democracy in action was satisfying. I pay tribute to the MPs who sat throughout this long day and still had to disperse around the country to their homes afterwards. Probably they learned nothing they didn’t know already, but they paid respectful and sympathetic attention to everyone who had asked to make a personal impression.

It was a little anticlimactic to join a few dozen people at the Community of St Luke in Remuera in the evening. They offered a debate between Hon David Seymour, the promoter of the bill that is sitting in Parliament’s Ballot Box and Matthew Jansen, the Secretary of the Care Alliance. Between them was not much agreement, as might have been expected, but also, a wide range of conflicting statistics from the same countries.

And there was an astonishing claim that “If you can give me the name of one doctor who has hastened the death of a patient (“murdered” was the word used) I will go to the nearest Police Station and have him (sic) charged”. I could have given him names of two or three compassionate and practical medicos and someone else said she could name four. But considering 11.2% of NZ doctors admitted in a survey last year that they had taken just such steps, the ridiculous offer was just grandstanding and illustrated only the lengths to which one can when one’s case seems threatened.

Again, the evening produced nothing new. We’ve heard both sides of it all before. Parliament just needs to make a decision. Our best hope is for David Seymour’s bill to pop up out of the Ballot Box. I suspect that the Committee will produce a huge report but no firm strategy for Parliament.

What I said to the Enquiry

My Five Minutes Spoken Submission
to the Health Committee   4 pm 14 Oct 2016

Introduction

I am Dave Mullan, of Red Beach, retired Methodist Presbyter, 81.
I have advanced prostate cancer.

Just over a century ago, my great-grandfather, TW Attwood, was in a deputation to the new Parliament House. He would have argued a strong case—not like mine, which probably doesn’t break any new ground. But the family say he also had great passion. I hope something of that passion in a parliamentary office long ago will be apparent in this submission.—

Tetany Spasms

After an emergency surgery, I woke in the middle of the night with the most appalling pain seizing me. Every muscle between my knees and shoulders seemed to be trying to tug on the massive abdominal incision and tear it apart. It was like every muscle was cramping at once. I couldn’t move for the moments of the attack, couldn’t even breathe, or speak or cry out. I immediately realised this was not normal post-operative pain. Something in me was creating it. Only with a conscious effort of will was I able to unravel the muscles, like easing a possum skin off the nailed board on which it’s been stretched. It took time and the pain continued throughout.

Although I reported this problem to the surgical Rounds team at 8am — and in fact had an episode right in front of them while they stood round the bed — not one of them offered any comment. Subsequent conversations with the pain specialist failed to deal with ongoing attacks for nearly 48 hours.

One night a nurse really listened to me and I was prescribed a drug that stopped the attacks. But there was still no diagnosis. Months later, a very knowledgeable nurse friend suggested that I might have experienced tetany spasms. I surfed the net—as you do—and found a surgeon who had experienced the same very rare symptoms after his own operation and was appalled at the level of pain.

Prospect

If that kind of pain, even in short spasms, is what I might expect when this rather ordinary disease overtakes me some time, I don’t want it. If something like that is what broadcaster Andrew Denton described of his father’s agonising death, I don’t want it. From my own experience with the excruciating agony of those terrifying spasms, I don’t have any confidence that pain of that level will necessarily be palliated or even recognised. Nor do I believe for a moment that pain is a necessary part of the very ordinary business of dying in the modern age.

Reflection

Looking over my submission, I don’t wish to change much. But I hope you will review carefully the sections on—

·       the Slippery Slope and Change and their risks and effects;

·       the suggestion that much traditional religious thinking is not helpful in this debate in the context of a secular society;

·       my claim that medicine, Government, and some Christians are trying to have a bet each way;

·       my view that full agreement on the issue should not be expected

·       but providing for choice is a demonstrably fair and reasonable expectation for some terminal patients.

In every waiting room in the Health system I’ve seen posters encouraging me to become involved in my health decisions—until my last days when my wishes will suddenly expire like a twelve months’ old Prezzy Card. Please now take that further step and allow me a little simple responsibility in my dying. Please extend my personal choice to that life-defining moment.

“Looking Great”

All through my journey with prostate cancer people—becoming aware of my rising PSA said, “But, Dave, you’re looking great.”  They didn’t realise that it was hormone medication that was filling out my face so of course I looked good. Recalling the gaunt, emaciated faces of many terminal cancer patients, what I ask of you now is that after my death, anyone seeing me might say, “Gee, Dave, you’re looking great” — because you gave me the choice of dying with dignity.

And, oh yes, my great-grandfather’s petition to Parliament? The following year, exactly a century ago, Parliament granted their request which led to sweeping changes in the fruitgrowing industry. Tongue in cheek, I suggest that is a great precedent for your Committee today. You, also, could create significant change for our country by encouraging Parliament to permit me and other terminal patients to have some say in our end of life.

Dave Mullan

28/101 Red Beach Rd, Red Beach,  0932      +64 9 426 7562

Thank you, Aussie!

Assisted dying a step closer in State of Victoria
Yesterday the cross-party Inquiry into legalising assisted death in the State delivered a revolutionary report to Parliament. The Committee has made some 49 recommendations and at least two members acknowledged that evaluating nearly 900 submissions had changed their point of view on the issue.

One of the clinchers was that Coroners reported that increasing numbers of terminally ill Australians "are committing suicide in horrific and terrible ways" ... "in the shadow of the law" while they are still able to. The implication is that some of those who committed suicide in Australia would not have done this had they known another choice could be available to them.  Certainly, evidence from countries where assisted dying is legal suggested to the Victoria Inquiry (members travelled to several countries) that half of those who obtain a prescription do not use it but live more comfortably and confidently because they have the means if they need it.

That is what choice is all about. That is the option I think we should move towards in NZ. The reasons and the evidence are as relevant for this country as for Victoria.

But I note that the Aussie Inquiry took some ten months and had only 900 submissions. I wonder when our Health Select Committee will get through ten or more thousand submissions.

Old Age is No Fun

In the 1970s I thought a lot about work and leisure. I developed a theme from, I think, Earle Brill, in an interesting little book titled Sex is Dead, that work was not all it was cracked up to be.
The idea came from the ancient Hebrew myth that the punishment of Adam and Eve was not just that they were thrown out of the Garden of Eden. Adam was told that only in the sweat of his brow would he get bread. So "work", in this context, is not the virtue that our Puritan forebears would have called it but is actually a punishment. It was not intended to be fun or enjoyable, but simply done.
Out of this came the Mission to Leisure which led the Dunedin Mission to make considerable investment  in the holiday camp site at Kawarau Falls. We instituted some special programmes to help people make the most of such leisure as they had.
Lately I have been taking the Garden of Eden story a little further. Not only is Adam told that he is going to be punished by having to work; but Eve hears that only in pain will she bring forth life. Pain, severe pain, I suggest, is also presented in this ancient context, as a punishment. I didn't think much about that in the 1970s.
But, my word, in later days I have become very conscious of the amount of pain that is experienced in the world of the descendants of Adam and Eve... The sheer scale of deprivation, dislocation and every kind of pain and suffering experienced by millions of our brothers and sisters in other lands beggars description. Even with the most modern technology to bring the problem right into our living rooms, we cannot get our minds around the sheer dimensions of the problem.
And in the last couple of years in this residential community of older people, I've become quickly aware that old age is not always so much fun, either. We may have all we need of shelter and food and affection but the maladies of age that we joke about among ourselves are sometimes more than some can bear. Several people in one of our cities have died in Council or State flats over the last year or so, with no one to miss them until the stench disturbs their neighbours. It could conceivably happen here, too, in this community of 350, even with emergency call-bells in all directions.
Singing out to small groups of "over 60s", our Barbershop quartet has seen groups that were, actually, over 80 or more, many of them transported in vehicles or using walking aids of one kind and another. Some of them said the simple hot meal provided afterwards would be the best meal they would have all week. Old age, for many of them, was not much fun - even with our entertainment!
I have wondered if the God of the Garden of Eden story might not have gone a bit further and said to both Adam and Eve "And, by the way, when you get old, don't count on that being a Garden of Eden, either...  there'll be more pain that is all part of the punishment... You aren't expected to enjoy it, just endure it."
A few modern critics would suggest, as the Puritans once did about work, that pain and suffering are really good for you. But they are wrong. It is that bit of thinking that encourages me in my modest campaign for the right of Choice at the End of Life. I just don't believe that suffering and pain and misery have any virtue in themselves at all. At the end of a life of working and bearing trials of one kind and another, there is no justice, never mind compassion, in a demand that we must continue to suffer long after our bodies and minds have decided to give up. Some Right to Life is fundamental, but so is some Right to a Good Death.
Of course, we don't base all our thinking and acting in these days on an ancient myth and its very simplistic views of right and wrong and good and evil. But those ancient thinkers seem to have sensed something that rings bells for me. The sweat of labour and the pain of life's beginnings and its endings, are not part of some great scheme of things. They are just reminders that in some way, we may be less than we can be And we must do the best we can with them. And there may be no lack of virtue in merely putting up with the one and choosing the avoid the worst of the other.

My Mid-December Submission

Now that the Health Select Committee has presumably seen my submission I think it is OK for me to put it here for those who have asked to see it. It was submitted in mid-December, and by the time I get to speak to it, I may have modified some of my views and clarified some of the bald statements that I presented as "facts". But, for the most part, it is still consistent with my overall position.


1
SUBMISSION
TO PARLIAMENTARY SELECT COMMITTEE ON HEALTH
David Stewart Mullan of Red Beach, retired Methodist presbyter
I support legislation to permit choice of some form of assisted dying in New Zealand.
In relation to the Committee’s Terms of Reference:—
My submission is an attempt to offer a “concerned New Zealander” view about the “ending of one’s life and the current legal situation”.
It comments on the “effectiveness of services and support available” to me as I face terminal cancer and a possible desire to end what remains of my life.
It also touches upon “factors that contribute to desire to end one’s life”.
I wish to speak to the Committee.
My contact details are
28/101 Red Beach Rd, Hibiscus Coast 0932
09 426 7562
021 169 6558
colcom.press@clear.net.nz

2   Synopsis
My Background
I introduce my personal diagnosis with prostate cancer and describe my present situation.
Issues
1— DIGNITY
I am deeply concerned at the lack of dignity that accompanies some deaths.
2— ECONOMICS
If palliative care is a realistic alternative to voluntary euthanasia—as some have suggested—it should be more adequately funded.
3— PERSONAL COST/BENEFIT
Abiraterone, offered to me, would have cost the State $4000 a month, for relatively little gain. Oxycodone, a palliative, is not on the free list.
4— HIDDEN “COSTS”
The personal cost and trauma of unnecessarily prolonged life is carried for a long time by some bereaved people.
5— CHOICE AND BELIEFS
I reject a religious philosophy that suggests that unbearable suffering is acceptable and respectful of the sanctity of life.
6— THE BENEFICIARIES
Those who stand to benefit from end of life choice are not a large group, nor are they easily identified but they have a genuine need.
7— COMPARABLE ISSUES
Other controversial issues involving relatively small sections of the population have been legislated for.
8— “SLIPPERY SLOPE?”
Of course a new law may be abused or even deliberately altered later. But the present proposal should be viewed on its merits alone.
9— CHANGE
Medical practice around end of life issues has changed greatly. It is time for our country to move towards increased respect for the dying.
10— MY CONVICTIONS
I wish to have some control over my health and welfare including decisions around my end of life.
11— SUMMARY
Medicine, some Christians, and Parliament cannot “have it both ways” but dying patients deserve some choice in the manner of their death.
Associated persons

3  My Background
Introduction
Aged 80, I have been living with prostate cancer for thirteen years. In 2002 a routine PSA check-up led to a diagnosis of prostate cancer in four out of six biopsy samples. It was Gleason Grade 7, on the border between average and high. Using Walsh’s formula I gave myself a survival prospect of 80% chance of three years and 30% chance of eight years without medical intervention.
Living in the Far North, we considered the options and decided on surgery in Whangarei hospital. A year after surgery my PSA became measurable again and rose consistently for three or so years until I went onto Zoladex implants which knocked it down again. Within another few years it was increasing once more and Bicalutamide was added, giving another cycle of low PSA and then another steady rise. After nine years of these cycles ago my urologist declared that he could do no more for me. This prompted us to move to Hibiscus Coast last year, to be closer to some of our family.
Cancer Located
North Shore Hospital happened to be one of three NZ centres that offered the ARN 509 trial so I applied for this. I failed to qualify for the trial because the extensive assessment process revealed that the cancer had migrated to my spine. I had some targeted radiation in 2014 and this set back my PSA another twelve months. But it is now rising more rapidly than before, doubling in much less than six months. In December 2015 I have been through another round of diagnostics and consultations and am now commencing Cyproterone.
Quality of Life
For sixty-eight years I lived a very full life with virtually no medical problems. Even in the years since my diagnosis and the wild fluctuations in PSA and concomitant medical discomforts, I have continued a very satisfying and meaningful existence. I was able to make a significant contribution to the Bay of Islands community through the Uniting Church, Residents’ and Ratepayers’ Association, Community Patrol and convenership of the widely representative but controversial Paihia Planning Committee. For two years I served as National Chairperson of the Uniting Congregations of Aotearoa-New Zealand.
Privately, in the same period since my diagnosis, I have written and self-published several books, written and acted in dramatic productions, made prosumer video documentaries and created and staged three complex murder mysteries. I have travelled widely and enjoyed several years of retirement of the highest possible quality of life. I am profoundly indebted to the public health system for providing the ongoing medication which has made this greatly extended journey of meaningful life possible.
It seems likely that my life expectancy is now shorter rather than longer. So I have more than average interest in the matter that is before your Committee. Through my cancer journey of these fourteen years I have greatly appreciated the way in which my views have been considered in my medical and surgical care. In every institution I have seen notices and leaflets proclaiming the central role of the patient in one’s own welfare. This submission points out that all such assurances about involving the patient in his or her welfare stop short of allowing one to choose the moment when life may end.
This must change.
Note: I have used the terms Voluntary Euthanasia, Physician Assisted Dying, etc interchangeably, always referring to a death that is initiated by patient choice. Choice is at the heart of my submission.

4   Issues
1—DIGNITY
As a retired presbyter or minister, I have probably given more thought to end of life issues than many people. In parish work I ministered to countless individuals who were unable to extricate themselves from the burden of medical over-enthusiasm and/or their own inability to take charge of their own demise. I agonised over people whose religious beliefs dictated that long-drawn-out physical suffering, mental and emotional stress were, by their interpretation, the “will of God” for them. I have seen attempts at compassion that delivered only further stress for all concerned. I have seen dying Christians, who believed with all their hearts that they would go to a better life after death, resisting death with all their might. And I have witnessed dyings that had neither integrity nor dignity and were a denial of what I understand to be the teachings of Jesus.
An elderly male relative of mine spent his final days in physical pain and mental suffering and various kinds of helplessness, indignity, discomfort and embarrassment. He was ready to go long before his death actually took place. He specifically expressed to his daughter his anger and disappointment at waking up after an episode where he expected—and was happy—to die but was “revived” by well-meaning medicos. He received good hospital care (much more than the 1.5 hours per day that Submitter Celia Barrell says were given to her husband). And that care was certainly not directed solely towards keeping him alive. But his was a bad death. It may have ticked the formal medical boxes but to me it seemed inhumane.
I submit that a progressive society such as ours should be moving firmly towards delivering and enhancing dignity in dying.
2—ECONOMICS
I have been greatly impressed by the Hospice movement and its remarkable efforts in palliative care and its determined quest for dignity and comfort in the last days of life. However, I understand that a university survey of 160 hospices in Australia revealed that one in five Hospice patients dies in unmanageable pain and suffering. This appears to be not because more effective drugs are not used. I am becoming aware that ultimate medication for extreme pain with opioids such as Oxycodone is too expensive to be provided for many patients. My local Hospice targeted its financial appeal for this year around specific reference to their inability to fund all the pain relief they wished to offer through this kind of medication.
I suspect that many of the general public blithely assume that Hospice and our public health services can continue to meet the huge cost of alleviating pain while maintaining the pulse, breathing and brainwaves of those from whom illness or sheer age has stripped most or even all of the elements of actual meaningful living. This is evidently not the case. It is inaccurate, misleading and irresponsible to suggest that Voluntary Euthanasia is not necessary because hospices are able to take away all pain and suffering. Medical science may have the answer. But the plain fact appears to be that our country’s Health budget does not pay for it.
I point out that it is ironic that the same Parliament which until now has sat on its hands about a debate on end of life choice has been equally unwilling to fund ultimate medication to deal with ultimate suffering.
3—PERSONAL COST/BENEFIT
As Superintendent of the Dunedin Methodist Mission which managed a Rest Home and Hospital of around 80 beds in the 1970s, and as a member and chairperson of the Department of Social Welfare’s Home Budgeting Advisory Committee of 1978-1988, I have been well aware of the public cost of medical care of people who, like myself, are moving into their 80s while falling victim to debilitating
illness and disease. There are large issues here. I accept that the cost of this care should not be considered as a central factor in the End of Life Choice debate.
Yet, from a purely personal perspective, I have a sense of concern about decisions to be made around my own diagnosis. Three months ago I was offered Abiraterone. This $4000 a month drug had just come onto the Pharmac free list (for only 700 men) and I was told I met the criteria. Trials indicate that this drug is likely to add four or so months to average life expectancy.
It is tempting to choose any delay in the onset of the pain and discomfort that usually mark the end of a journey with prostate cancer. I could perhaps hope to extend my life long enough to be around for another great-grandchild or two. (I could even live long enough for Parliament to have passed a law allowing me to choose not to have to endure the unendurable!). But if I can be dispassionate about the situation, I sense that the huge cost of a course of Abiraterone might be better expended in some other part of the Health budget or on some younger man.
The public health system has been extraordinarily good to me. I have had three other major surgeries during my thirteen year journey with cancer: a surgical emergency and two unicompartment knee replacements. The latter will not have a long life, but they have added immeasurably to my mobility and quality of life in the last few years and I am immensely grateful for them. Abiraterone, in my present situation, will not make that anything like that degree of difference to my life. On the other hand, I tell myself that if there’s no change in the law I guess some Oxycodone would be pretty good when the time comes—lots and lots of it!
If the Committee finds itself unable to support Voluntary Euthanasia, my own personal need in the future is likely to centre around more comprehensive funding for palliative care.
4—HIDDEN “COSTS”
And, of course, care and medication are only a part of the “cost” of unnecessarily prolonged life. When I was in active parish ministry—well before the Hospice movement—I sat many times with people at the deathbed of a family member. I was appalled at the physical and emotional toll on all concerned. A few of the dying, like my mother, took control of their passage from life to death by refusing all medication, food and drink. To the consternation of their families, some of these few managed their own deaths—after a fashion. My mother achieved this in a matter of hours after her final resistance to medication and sustenance that were pressed upon her. But not before members of the family had an interview that amounted to a very unpleasant confrontation with the Medical Superintendent who claimed not have heard of the firm statements she made at the local hospital where she was first admitted. At least she was finally able to get her wish; but I saw several people survive for days or even weeks as dehydration and starvation and general debilitation gradually consumed their frail bodies.
As if the stress of this kind of death is not enough, patients also suffer from knowing the stress and strain the manner of their dying is imposing on their families. My mother’s two aunts and her own mother died lingering deaths, and these coloured her negative response to her own emergency hospitalisation. She was determined not to inflict on her loved ones the months and years of stress that she experienced in her own relatives’ deaths.
Certainly, in my experience as a pastor in the 1960s, I became acutely aware that absolute exhaustion around demanding and demeaning deaths sometimes caused huge psychological and emotional barriers to wholesome bereavement outcomes. There is a cost to society for inadequate handling of grief and anger when next of kin and friends are subjected to a long drawn out and stressful death. For the bereaved, these emotions may continue for some time even when competent counselling and professional support are sought.
I invite the Committee to acknowledge that the personal cost of unnecessarily prolonged life is carried for only a limited time by the dying but some bereaved may carry extra trauma for much longer.

5—CHOICE AND BELIEFS
Of course “choice” in this context is a controversial issue. It is not surprising that strong and conservative opinions are held by many religious leaders. I appreciate that some Christians argue that the sacredness of life itself is more important to them than the actual quality of life. Some even ascribe a kind of religious virtue to suffering, informing us that it builds character and makes us stronger. Of course it may—there are plenty of examples of suffering that has built character in both the sufferer and those who surround her. But in my view it is not a commendable religious practice to justify an unpleasant physical experience as some kind of character-building exercise. It is still less virtuous to describe suffering as an Act of God, or worse, a punishment for a life lived less than satisfactorily. I certainly reject the theology that claims that pain and suffering are “sent” by some all-powerful providence to “test” us. I affirm the view of the British Inter-Faith leaders for Dignity in Dying —
There is nothing sacred about suffering, nothing holy about agony, and individuals should not be obliged to endure it.
Rev Professor Douglas Pratt, of the University of Waikato, has reminded me that the “sacredness” of life—particularly for religious people—is about something more than mere biology. An irony he and I see is that as we draw towards life’s end, the biological element of being is often the last to decline. The fullness of life when we enjoyed all of life’s faculties is going or gone. To deny end-of-life choice to people as they pass from that fullness to an existence which may be little more than biological is to degrade the concept of sacredness itself. Dr Pratt echoes the UK quote above—
There is nothing inherently sacred in an existentially belittling mere biological existence. The allowance of choice to either prevent interventions aimed at prolonging such life, or to facilitate its inevitable end, needs to be granted.
The key word is choice. I don’t ask anyone else to live by my understanding of faith. Nobody has to live by my religion. Current proposals around voluntary euthanasia do not condemn anyone to doing anything that is contrary to their personal religious position. What I want to impress on you is that the present law denies me the right to act for myself according to my personal Christian faith and beliefs. For me, choice about ending my life in appropriate circumstances is an issue of human rights of which, under the present law, I am deprived.
I can quite understand the historical influences which have led our country to apparently deny its citizens the right to shorten an intolerable existence. But the theological view that once led to a rigid understanding of the nature of a human life has long since been rejected by most of our citizens. The selective use of the Christian scriptures to make a point in this day and age is not acceptable to me. Indeed, I am not comfortable with fixed views on any matters of ethics and morality. The changes that have taken place in Christian thinking about issues that used to be viewed as absolute, lead me to believe that the essence of Christianity is not in hard and fast rules—it is centred on relationships and the principle of compassion.
These qualities are not particularly distinctive to the Christian faith but are worthy components of any modern society. All the good governments of history—whether secular or religious—have tried to provide for all their people to live together in harmony. At the same time good societies take responsibility for their infirm, their aged, their impoverished and their sick. The implications of relationships and compassion in both living and dying impel me to make this submission.
I ask the Committee to recognise that the present law—far from shaping and supporting constructive behaviour among our citizens—degrades human relationships and impedes basic human compassion.
6—THE BENEFICIARIES
It should go without saying that law-makers should pay considerable attention to the beneficiaries of any proposed law. In making a controversial decision, this is even more important. When the “right hand” rule was changed a few years ago there was no groundswell of opinion among the electorate
that this was an urgently needed reform. But it was needed, among other reasons, for the benefit of the small number of victims of road accidents. Amendments to the Sale of Liquor Act have also been put through—against strong opposition—on the strength of the benefits to a loosely defined core of victims as well as the whole of society. Increasing the limits of blood alcohol for drivers have also made a demonstrable difference for victims of road accidents who, statistically might have been considered a relatively insignificant group.
The evidence suggests that Physician Assisted Death is clearly a proposal which will affect only a handful of people in any year. Where it has been made available in other jurisdictions there has been no wholesale rush of aspiring candidates. Indeed, a significant proportion of patients, given the choice, decline to use it. There is no reason to believe that there is a vast multitude of people waiting impatiently to be allowed to initiate the ending of their lives. In allying myself with the End of Life Choice movement I have found it impossible to identify a segment of the population who clearly stand to benefit. The circumstances in which end of life choice is desirable cannot be predicted. And when the time comes, people like me may claim that they want the right to choose while others may prefer not to seek such a law change. But in the situation of extreme untreatable pain or an unbearable existence, who can say how any individual will react?
I believe the Committee must recognise that a properly devised provision for End of Life Choice will not have widespread implications but has substantial personal benefits for a few.
7—COMPARABLE ISSUES
Provision for choice in ethical and moral issues is not a drastically new step. Parliament has many times made decisions to give some citizens the right to do what other citizens would choose not to do. In my lifetime, equally controversial issues of abortion and homosexual relationships have been legislated for in carefully drafted provisions. These new laws seem to function in manageable ways, permitting personal choice that was not previously available. For the people concerned, these changes have given new life and dignity.
Provision for some form of voluntary assisted dying in properly regulated circumstances is directly comparable. To provide legislation for particular groups in society does not create a new principle for Parliament. It is simply part of the normal responsibility of an elected assembly in a democratic community.
I urge the Committee to invite Parliament to step up and exercise its full responsibility for the good of all citizens.
8—THE “SLIPPERY SLOPE”?
All laws that have any kind of moral element to them have some inherent risk of abuse. When changes are proposed there is always opportunity for objectors to claim that what is proposed will be an inevitable descent into some less acceptable moral or ethical position.
I submit that almost all previous adjustments to the moral rights of certain sectors of our society could have been resisted on the same grounds. When Parliament wrote careful law there have usually been improved outcomes for all concerned.
Not much law would be enacted if every conceivable extension of it became a reason for not proceeding. It would be irrational and unhelpful for you to allow speculation that all of the conditions as drafted in the proposed bills are in some way defective because at a later time some aspects of them may be further amended. It seems to me to be irresponsible and deceitful for submitters to base their objections on their own predicted variations, events or principles that are not part of the proposal.
I urge you to address the specific argument of the supporters of physician assisted dying, not some imagined extensions of the proposal.

9—CHANGE
Times change. Society’s attitudes and mores change. A relevant reality in this context is that withholding medication or treatment to allow death to take its course was, within my living memory, considered by many people to be every bit as offensive as Voluntary Euthanasia is to some people now. Today, however, this practice—passive euthanasia—is quite widely exercised on compassionate grounds, subject always to personal conscience. This has been a substantial shift in public opinion and medical practice.
Even more significant was the development of indirect euthanasia in which treatment is provided to alleviate pain in the knowledge that a predictable side effect of the treatment is that death will be hastened. The technique, and its implications, were known half a century ago, but not practised widely until more recent times. The use of opioids in the context of cancer deaths such as I anticipate for myself, has become widespread. They are given to reduce pain but in the knowledge that they will also hasten death.
The outcome in both passive and indirect euthanasia is that life will end. That is a reality. It is why some claim that bringing about death by providing or withholding certain treatments, is always wrong. It is always “killing”. I have every respect for this position. It seems consistent with thousands of years of both religious and secular codes about the sacredness of human life. But the reality is that it has never been widely respected as an absolute standard. Certainly, I reject it for myself. In the contemporary context of all kinds of interventions that have an effect for good or ill on individuals, I have not embraced this view for most of my life.
For over four decades I have retained the clearest memory of holding one of our very frail elderly Rest Home patients who collapsed on the cinema stairs after a special matinee which she and everyone else had thoroughly enjoyed. We sent for an ambulance and I held her in my arms as the life flickered out of her. But a few minutes later well-meaning ambulance staff grabbed her from me and vigorously employed the brutal physical actions of the day to try to thrash her aged and withered frame back into some kind of life. They were doing what was right and proper according to their lights. But I was glad that they failed.
As a maturing society we do not have to ride on the crest of every fresh wave of science or theology and certainly not popular opinion. But nor do we have to orient our existence today only around what was good enough for our grandparents. And certainly not on what was good enough for Moses—as some of my Christian friends would probably say. Nor, indeed, on the brilliant Hippocrates, whose fundamental approach to doing no harm may still be absolutely at the heart of most of what medicine seeks to achieve.
These are new days and they invite fresh thinking. We have to grapple with new ideas, new developments, new sensitivities. More difficult, we have to unlearn some of our old ways to accommodate some of the new. Some of the very principles by which we have ordered our life as a society may no longer meet the needs of the day. Every sector of our country needs to reflect on the issues and be open to discarding outdated beliefs in order to help us all to move ahead.
Those who interpret the Hippocratic oath to “do no harm” as somehow justifying prolonged agony and suffering and denying choice for their dying patients should, to be consistent, also reject the use of passive or indirect euthanasia decisions that are made daily in the context of modern medicine and technology. In the context of a life that is clearly ending, it may be only a very small step from bringing about the ending of life by the painful process of doing nothing or over-medicating to simply ending life by granting the wishes of a desperate patient who chooses to die a little sooner rather than later. Either way, in a sense, medicine can stand under judgment. Nothing can be done about that. Providing for patient choice or denying it cannot make that dilemma go away.
Broadcaster Andrew Denton has recently observed that under prevailing Australian Palliative Care guidelines— ...it is ethically unacceptable for a patient to choose a death that is quick and painless, (but it) is ethically acceptable for them to choose a slow, painful death by dehydration and starvation.
In the face of this dilemma it seems unreasonable to expect the medical profession to initiate some provision for patient choice. Indeed in July the Chair of the NZMA was quoted as saying that doctors should not have any part in decisions about dying. Given that a change in law is likely to involve them even more than at present the medical profession cannot be expected to bite the bullet and take the initiative. Only Parliament can deal with the challenge of this kind of creative change.
I suggest that the Committee remind itself that progress in human society is made most often when things are changed, not when things are prevented from changing.
10—MY CONVICTIONS
I have prepared appropriate end-of-life documents and among them are clear instructions that I be given no heroic interventions as my death approaches. These provisions arise out of some clear personal convictions—
1. I recognise that these days considerable discretion is exercised in the health sector, whether by medicating to keep alive a patient who is dying naturally or withdrawing medication or a procedure to permit death to proceed.
2. However, I believe that our health system is still too heavily oriented towards the maintenance of mere “physiological or biological existence” at all costs; I reject the philosophy that appears to exhibit a stubborn resistance to the reality that death is a most natural part of life;
3. I wish to continue to have some control over my health and welfare as long as I am able to do so and this includes choice about some specifics of my end of life;
4. Indeed, I believe that after I am no longer able to express my wishes, there should be careful consideration of my previously expressed views when decisions have to be made as to my life, and especially decisions around prolonging of my death.
As to the last of these, I realise that it is not within the terms of reference of this Committee—perhaps this may yet be taken into your deliberations. But I wish to press on you the need for people in my position to be able to approach death knowing that the third of these convictions will be taken into consideration. For me, this means that if the time comes that unbearable, untreatable pain and suffering confront me and my loved ones while I am still able to make a decision, I want to have at hand the means to draw my life to a peaceful end with dignity should I choose to do so. I want the opportunity to choose to make the meaningful transition of being that is death with dignity, and, perhaps, some kind of celebration with family and friends.
Given such opportunity, I may well decide not to use it. But I beg you to allow me the means to choose to initiate my own release from the very worst discomforts of life after its pleasures have receded.
Please give me a law that enables me to make this choice.
11—SUMMARY
In summary I offer you some alternatives which might be taken into consideration as you deliberate this difficult issue. I put it to you that—
Some Politicians must either stop talking about palliative care as a viable alternative to Patient Choice—
OR provide much more adequate funding for the very best in palliative care.
Some Christians must either review their understanding of the absolute sacredness of life in whatever circumstances—
OR publish their disbelief in the care and compassion of Jesus for the helpless and outcast;
Medicine, which acknowledges that both passive and indirect euthanasia actually result in the ending of life, should either desist from these practices—
OR find a way of enabling, on a conscience basis, the ending of life for patients who wish to choose a more comfortable route;
These groups cannot “have it both ways”.
HOWEVER
Patients suffering untreatable and unbearable conditions should be allowed to have it both ways
They should have the freedom to ask for the means to end unendurable lives
And also the freedom to use it— or not use it.
For this issue is just about these few individuals and their own declared needs. We need you to make this possible.
I make this submission on my own behalf but the following persons have studied it and have asked to be associated with it.
Bainbridge, Warwick John, 7 Bella Vista Drive, 0930
Fannin, Jocelyn, 300/101 Red Beach Rd, 0932
George, Philip Roland. 301/36 Shetland St, 9010
Gibson, Rev Loyal J, 12 Madison Ave, 4414
Hayward, Peter Marten, 7 Bella Vista Drive 0930
Mullan, Beverley, 28/101 Red Beach Rd, 0932
Overend, Robert, 140 Stanmore Bay Rd, 0932
Pratt, Rev David S, 10 Valley Rd, Northcote
Pratt, Rev Prof Douglas, University of Waikato
Packard, Peter, 570/101 Red Beach Rd, 0932
(Signed) David S Mullan