Monday, August 13, 2018

Justice in the Justice Committee?


A few minutes ago, Dr Jack Havill, the former President of End-of-Life Choice, when making his submission to members of the Justice Committee at a Hearing in Hamilton added these extraordinary and unconventional comments:-

"The second part of  this submission may seem very unusual.
It is a complaint about the Deputy Chair of the Justice Select Committee. I have spoken to many New Zealanders and they cannot understand why, as the Deputy Chair of the Selection Committee, hearing oral submissions on the (End of Life Choice) Bill, the Honourable Maggie Barry should show her bias so publicly and indeed spend much of her time campaigning at public meetings against medical aid in dying.
This seems to the average member of the public as totally unfair, especially as she has also been aggressive to actual submitters while giving (their) oral submission.
We do not maintain that she should not have opinions against the Bill, but we expect her to act impartially in her role as Deputy Chair, and to consider evidence which support MAID in a reasonable manner.
She has been bringing the process into dispute.
Our opinion is that she should resign from the position as Deputy Chair because she is heavily compromised."
I have already indicated in this blog that I was deeply concerned at Maggie Barry's attitude in the Hearing which I attended on 29 June. From this brief experience, and seeing her speaking publicly in opposition to the Bill I can only endorse Dr Havill's concern. 
I observed submitters in favour of the Bill being subjected to aggressive questioning, to denials that their submissions could be true, and to lectures on the other side of the issue. One submitter was subjected to just plain rudeness while making a strongly felt submission; she suddenly found that the Chair of the Day had left her seat and walked some distance away to make herself a cup of tea.
I believe the Speaker of the House has been approached about the apparent conflict of interest. I understand he was given the astonishing reply that there is no Code of Conduct set down for the conduct of Parliamentary Hearings. Members are not, apparently, even expected to maintain a show of impartiality. That is certainly how the Auckland Hearing was conducted on Friday 29 June.
I suggest that in the interest of the “fair play” that we in this country pride ourselves upon that Ms Barry either immediately recuse herself as a Hearer or else cease offering her opinions on any public stage.
She cannot have it both ways. She must choose. Either decision could be a simple action that would restore some show of integrity to the Parliamentary Select Committee on Justice.
And I hope that she makes this choice before speaking against the Bill at a public meeting called by our MP Mark Mitchell, to be held in Orewa on Tuesday 21st. I will be there and I hope a good crowd of fair-minded locals will turn out – on both sides of the argument – to engage together in a congenial and democratic process of exploring the issues.

Monday, August 6, 2018

Ca Pros Update


It's been a fairly frenetic few weeks for this household, but the medical report is that the substantial pains emanating from the cancer in my spine in June have been abated by five targeted bursts of radiation. Apart from (almost inevitable) tummy upsets and some unrelated pain in my left ankle I've had a really good run in the last three or four weeks.

After all the stress of making a submission to the  Parliamentary Select Committee on Justice I thought it would be easy enough to chat to the local reporter of the Rodney Times. But the whole of the front cover and two inside pages devoted to her report was a surprise. And to be told by someone I'd never met that the interview and a video involving both Bev and me had gone up on the national news carrier Stuff was much more of a surprise. Do look at it - it's Bev's first venture on public media. Both the video and the text have created a lot of interest just at the time our local MP is hosting a first public forum to debate the issues.

And guess what? The MP whose lack of impartiality I have roundly criticised is billed to speak against the Bill on which, as deputy Chair of the Parliamentary Select Committee on Justice, she is supposed to be conducting unbiased Hearings. I discussed this shameful conflict of interest with the reporter and it's going to be the subject of a further news release involving other people who were more affected than I was.

In the middle of all this stuff we've had some pleasant drives in the country and have had the Leaf's annual service for some 9000kms done for $54. And that's including a wheel rotation that I ordered. This particular EV is definitely not heavy on the family purse... and giving us a great deal of pleasure at a somewhat critical time in our lives.

Now Bev has reminded me about a bread mixture I put in the machine after breakfast and I have no idea when I started it... I'd better go and see what to make of it. It looks like this loaf may get a double rising...  And as soon as that's done we're heading out for a drive for less than the cost of a cup of coffee.  Of course, somewhere, we'll buy two coffees and share a piece of cake.





Sunday, July 29, 2018

Bev and I on the End-of-Life Choice Bill


A Waikanae lady I've never met has just phoned to tell us how our piece this week had moved her to thank us and wish us well. It was especially timely as we hadn't seen it ourselves after buying copies of the Sunday Star Times!
We were sensitively interviewed by Juliet McGhie of the Rodney Times and Videographer Anna who must have shot 150 photos. Their story has been picked up by Stuff and can be seen at the link below.
We don't want to make a huge fuss but we are willing to speak out on this issue which is becoming very personal and relevant for us. But it's a little ironic that July has been so much better for me than June.
And if I get invited to have a chat with the Bishop, I'd be happy to fit it into the September trip to see all the grand- and great-grand kids.

www.stuff.co.nz/national/health/105708352/former-methodist-ministers-desperate-support-for-the-end-of-life-choice-bill

Friday, July 20, 2018

Same old same old arguments...


As we continue in a prolonged period of waiting while the Justice Committee of Parliament hears all the same old arguments all over again, the following is a refreshing and hopeful statement.

“The laws that authorize medical aid in dying have worked exactly as intended, the evidence shows. They have benefited dying patients and their families without causing any harm to anyone.
“None of the problems that were expected by opponents have emerged. There is no
disproportionate effect on vulnerable populations, no evidence of a slippery slope.”

The writer was David C. Leven, executive director emeritus and a senior consultant to End of Life Choices New York, in a letter to the New York Times on June 20, words our MPs should bear in mind as they consider the Bill before Parliament.

This and other relevant matters are fully discussed in the current newsletter of the End-of-Life Choice Society. But also discussed are the tactics of some of the opposition such as Catholic Bishops who have "inspired fear and loathing with puerile lies that people with asthma, arthritis and gluten intolerance would be euthanized."

MP Maggie Barry is one who has swallowed this kind of line. At the recent E.O.L.C  hearing I quoted the 75-85% of kiwis who supported some change in the law and she responded with a lecture on the unreliability of national polls because the pollsters could skew them to get the results they wanted. And what about the 3% or 4% margin of error? she said. My parting shot was that a margin of error of 20% would still leave a substantial majority in favour of change. And she is co-Chair of the Justice Committee hearing submissions. When prejudice and statistical ignorance enters this kind of discussion, truth is hard to establish.

Another point in the newsletter is that the likelihood of a majority of 61 being secured by March next year is by no means assured. An analysis of the current likely voting is very interesting, but worrying. The opposition has massive organisation and funding and can be expected to mount a major PR campaign before the Parliament actually votes.

All this lends weight to a point a made in my submission (see June 19), to the effect that the lack of this kind of law change is likely to result in my taking into my own hands what is necessary to deal with unbearable and untreatable pain.




Saturday, June 30, 2018

Moving along some more


Image result for psa test results

We've now done the MRI which I believe showed nothing untoward in my right ear which went into low gear when we were on a cruise last January.
We have had a thoroughly pleasant interview with our Rad/Oncologist and we have agreed to go on a short course of radiation therapy, starting this coming week. If it's no worse than 2014, I guess I will cope with it OK.
But my tests this week aren't so great. My blood sugar is right up in the diabetic range and seems not to have responded to Metformin at all. The latter, however, made a huge impression on my digestion as reported earlier. 
My PSA shows another increase to 85 - not in itself a massive rise but in the context of the most expensive drug known to Prostate Cancer patients somebody needs to ask the question I asked before we started on it: When is the cost/benefit for a man of 83 simply not justifiable?
I have been getting reasonable pain control from a careful diet of paracetamol and if the radiotherapy is effective I may not need even that for some months. But I am increasingly tired and glad to have given up some major responsibilities in recent week. 

So what is there to complain about? Only the disappointing attitude of the Hearers to submissions on the End-of-Life Choice Bill the other day. The Chair seemed to want to argue with the submitters (on our side, anyway) rather than listen to them. Not a good day for Democracy yesterday.

Friday, June 29, 2018

The Submission 2018


Today 29 June 2018, Bev and I attended the hearing of the Justice Selection Committee of Parliament on the End-of-life Choice Bill. It was a very mixed experience, but, for those who are interested and who missed the live stream, this is the text of my submission.

Introduction

I am David S Mullan, of Red Beach, retired Methodist Presbyter, 83. I have advanced prostate cancer. I desperately support this Bill.

1.        A Very Personal Issue

Hours after an unrelated surgery I experienced the most appalling tetany spasms. I felt as if every muscle between my shoulders and knees was tugging on the edge of the incision. I could neither move nor cry out.
I duly reported these agonising episodes to the medical staff but nobody commented.
·      If that kind of pain, even in short spasms while unconscious is what I might expect when this wretched disease overtakes me, I don’t want it.
·      If something like that is what broadcaster Andrew Denton described of his father’s death, I don’t want it.
My cancer is now compressing my spinal nerves. It is affecting my legs. I am being medicated for daily pain. I can expect to be progressively paralysed and eventually made helpless. My experience with the mysterious tetany spasms leads me to believe that I may be one of the 15% of Hospice patients whose pain is simply not able to be palliated.
I had hoped that this Bill might have become Law in time for me to choose to take an organised farewell of family and friends and depart this life in some dignity. That now seems unlikely.
I may therefore decide to become another statistic among older people who are ending our lives prematurely. We are being treated with disdain by Parliament when all we ask for is some dignity and choice.
It is ironic to me that the opponents of the Bill already have their choice. But people like myself who know they are at risk of a bad death do not have choice for a dignified end. For us, this is an issue of Human Rights.
I submit that Parliament must decide that Choice for some citizens should no longer mean No Choice for others.

2.        Religious Issues

As a Christian thinker, I am troubled that some religious people say that untreated pain is in itself a transformative experience, is “good for the soul”.
That kind of religious teaching must be for their people. To apply this principle to others in a secular and democratic society is, in my view, disrespectful—and tragically wrong. So, the attempts by some submitters to hide the identity of their church are, in my view, little short of deceitful.
I am a member of the Methodist Church which has a history of being vocal on social justice issues. But it has based its views on contemporary and well-considered theological considerations. And rather than opposing change, it has usually given a lead to the community in changes for the better. Even in my lifetime it has taken action on Pacifism, Apartheid, Prison Reform, Industrial Relations, Homosexual Law Reform and the whole range of gender and Human Rights issues right up to the acceptance of LGTB people in church leadership.
So I stand in a tradition which has tried to encourage the wider community to become more liberal rather than to scold it with antiquated theologies and some “biblical” principles that were conceived in a different world.
I speak from the experience of a working lifetime in pastoral care, social work and ministry formation. I have entered into the suffering of many who have died badly. I have worked with their pastors and their frustrations. Now I face my own journey into dark places and I sense that my country does not respect my need.
And I speak from the perspective of the Christian Jesus who ministered to the needs of the marginal people of society. He put their personal needs ahead of institutional respectability and tradition.

I submit that your Committee might also sit lightly to institutional religion and give priority to charity and compassion for all people.

Kia ora tatou katoa!
  
Dave Mullan
28/101 Red Beach Rd, Red Beachn 0932
+64 9 426 7562  +6421 159 2896

Notes
Although Hon Maggie Barry, as is her wont, made quite a few speeches on her own account, in the guise of asking questions of some submitters, at the end of the my submission, when I paused for questions, her first one was "Would you like a cup of tea?" I wasn't expecting that.  I must have made some impact. We then had some discussion about the merits - or otherwise - of the report of the original Committee and properly conducted opinion polls and that was that. 


Saturday, June 23, 2018

Real Pain After Fifteen Years


The last three weeks we've had a fairly torrid time adjusting to some real pain from my cancer. It came on quite suddenly just after having my 'flu jab. (Really? Well, that's when it came...) For a time we thought I might have strained my back but the pain quickly went to my pelvis, thigh and down my left leg. And it was continuous. Not to be compared with tetany spasms (my personal definition of the worst pain ever) but definitely very uncomfortable for sitting or lying around.

I already have an appointment for radiotherapy which may reduce the pain. So, in the interim, we embarked on a DIY programme of pain management. Not very successful, actually. I'd taken Paracetamol plenty of times before but hadn't really paid attention to exactly the conditions under which it should be taken. Voltaren also required more sophisticated administration than I allowed. And a little adventure with Metformin, to reduce the blood sugar levels that had been elevated by Abiraterone was an outstanding gastric blowout of a totally unexpected nature. Goodness knows what other interactions are going on with my other three or four meds...

We are now reading the fine print a little more carefully and trying to get all these things into a routine which doesn't allow one med to fight with the other.  With varying success, I may say. So we are looking forward to a meeting with our Radio Oncologist this week to discuss radiotherapy and then a session with my GP to get any subsequent pain into a properly managed programme.

Battle with Cancer?


Image result for prostate cancer
As my cancer is beginning to make itself known I am interested to look back fourteen or so years to something that I wrote after surgery. I think it was for my recently-expired website. The theme seems all the more relevant now that I am actually feeling pain.

A year after surgery, when it became apparent that my prostate operation had not been completely successful I was shown an article by Christopher Newell of Tasmania and Christine Newman of Rotorua. In it she insisted that she wasn’t “having a battle with cancer”, she was simply a “person who has cancer”. It was, she said, part of herself and she celebrated herself. 

Christine wrote - 
To embrace my cancer
is to take life moment by moment and to see it in all its glory.
To embrace my cancer
is to see life from a bigger perspective rather than my own little world.
To embrace my cancer is to know
            That my days are numbered,
That I had better get on with things in life that matter,
That I should view life as a treasure not to be wasted
and through all these things, to no longer fear if a tumour appears.
Embracing my cancer
for me brings freedom and acceptance, not fear and rejection.
Embracing my cancer
sees not Satan at work but a God who is in control, no matter what...

I am not quite sure about the "God in control" bit, but I still find her views extremely  helpful.

Friday, June 22, 2018


Sorry, FB friends, I've had my mind of lots of other things than updating you on the End of Life Choice Meetings last weekend.

The sparsely attended National Annual Meeting did all its business fairly easily and returned the existing team for another year. President Maryan Street made sure that we didn't muck around a whole lot over the business.

But there's a sense of "Where do we go now?" with the Justice Committee being given another six months to report back to Parliament. March 2019 seems a long, long way away right now. You would have to feel that it's a deliberate strategy to dilute the debate. It certainly dilutes my chance of the Bill being passed in time for me to ask for Medical Aid in Dying if I need it.

In this awkward interim it would be easy for us to fire off a lot of publicity that got lost to sight by the time the bill is actually getting back into Parliament. But there are things that we can do with the existing internet capability and I must do some thinking about some new stuff on my own changing situation.

On the second day we attended the district Annual Meeting which was also a fairly quiet affair but featured a really interesting report by Jack Havill on recent surveys of doctors. It seems there is a substantial body of medicos who will be willing to work in Medical Aid in Dying when the Bill is eventually put into law. This gives the lie to objections that there won't be enough doctors to manage the programme.

Then yesterday I did an interview with a couple of Communications students who are doing a doco on the issue. The interviewer had really done his research (he'd already interviewed "Turkey" Collins and David Seymour) and I enjoyed the challenge.

All in all, an interesting few days with EOLC...


Monday, June 11, 2018

Moving along....

I didn't mention in my previous post that three or four weeks ago we've been aware of some back pain not related to any heavy lifting. The cancer in my spine is making itself known and lately I've had pain right through my pelvis and hip down to the bottom of my left leg. Another stage in the journey.

Paracetemol, of which I have a very large box, due to a prescription mistake some months ago, did not have the slightest effect.  So I am exploring Voltaren which actually is not used in some countries because of risks apparently not thought quite significant enough by the authorities in this country... Added to that experience is the pre-diabetes Metformin which on the first day blew the entire  contents of my digestive system down the toilet (Maybe just one a day instead of two as prescribed).

All in all I am not competing with some of the folk in our village but fourteen assorted pills a day seems quite a handful when they all have different requirements for proper management.
We now have an appointment for an MRI which will probably only confirm what we already know but may add something to medical knowledge about my ear problem. And we are going to meet the radio-oncologist to discuss some targeted radiation on my spine. Another decision that really need some careful evaluation of discomfort/benefit.

All in all, plenty to think about but it sure keeps one alive and thinking.
And, on Saturday I was astonished out of my mind to be awarded Patroller of the Year. That was a gracious and much appreciated gesture as I drop out of regular patrolling, I am hoping to keep up some contact as a non-patrolling patroller(!)

Monday, May 28, 2018

The Ca Pros Report May 2018


We rolled up at Med. Onc. with a large list of reports and queries this morning.
We had an excellent consultation and fairly easily reached agreement that—
·       Blood Pressure is excellent, better than self-checks at home
·       The Scintogram and CT Scan reports suggest intensification of existing cancer in L5/L4 rather than extension to other bone or soft structures as it appeared at first glance
·       An MRI is booked and is still needed, both for Prostate Cancer, a possible spot on my Hippocampus(?) and any possible Ca Pros link with the right ear problem
·       My levels of blood sugar now justify diabetic medication under GP, at least while on Abiraterone which is known to elevate blood sugar levels
·       Although the results from Abiraterone/Zytiga are not outstanding and even a bit disappointing, it seems to have no serious side effects and will continue for the time being
·       Recent back and leg pain is probably caused by the cancer in L4/5 and may well respond to further targeted radiation which will be put in place
·       Recent problems of balance, vertigo, etc  have no clear origin—ear, old age, medications—discuss with GP
·       Occasional problems of low mood—discuss with GP for possible adjustment of Venlafaxine, dose previously reduced for some months
·       Decision to withdraw from Village Minibus driver roster and active Community Patrol was agreed to be appropriate in the light of balance problems

Friday, May 11, 2018

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!

Monday, April 23, 2018

Medical Medical

I viewed a documentary on the making of "Grey's Anatomy" a few years ago. The Director said that when they were writing the script there were many places where the script had a gap merely marked "Medical Medical". That's where they called in the advisors to script medically correct words for the procedures being shown on screen.

My life is just entering a phase of "Medical Medical". Today we reported to the ear specialist and had a fascinating time. The outcome seems to be that the almost total loss in my right ear was indeed due to the chill and infection from over-zealous airconditioning on our cruise in January. Nothing much can be done for it, Hearing aids will increase the overall level of good audio in my "good" ear but they will also amplify the unpleasant interference that still comes through the right. However, there's a device some some musicians use (Dr Bill plays the bagpipes!) that may ease this. We're going to look into that.

I also gave up about six vials of blood for three sets of tests - my bone density, my blood sugar (a bit worrying, that one) and the usual raft of items for my cancer. And about now I need to submit to the injector that inserts another dose of Zoladex into by abdomen. I have received an appointment with Nuclear Medicine for a bone scintigram and am expecting to have at least one MRI and a more or less ordinary CT scan in the coming weeks. "Medical Medical" indeed...

Somewhere in my Future Directives there is a statement that I do not wish in the last stages of my condition to participate in purely diagnostic procedures. It's interesting that a lott of this activity comes into that category. But perhaps some inconvenience on my part will contribute to some new knowledge about the development of advanced, metastatic, castrate-resistant prostate cancer.

Meanwhile, Bev and I have some living to do and I have a Village Newsletter to publish.




Saturday, April 21, 2018

Shades of "Turkey" O'Connor

I wasn't able to attend but I admired the motivation behind those who called a recent meeting to discuss the End-of-Life Choice issues. Their advertised intention was to have a balanced, dispassionate, calm discussion of the subject. What a great place to start, I thought.
However, a first-person report that came to me about the event was that the Hon Maggie Barry was leading speaker one side of the debate. She might have been a good selection as she is a member of the Justice Select Committee which has to study the David Seymour Bill for Parliament. But I am told that she used words like "killed" and "murder" in the context of the discussion. Evidently she made it abundantly clear that she, like "Turkey" O'Connor who chaired the previous Committee*, has not only made up her mind on the issue but is resolved to do battle with it in ways that, in a civilised society, should surely be called into question. My informant said the event was not a debate at all but was simply "The Maggie Barry Show".
On a Select Committee of Parliament we hope for people who have open minds and have the willingness to explore all sides of the issue without descending to manipulation of the terms and derogatory verbal abuse. I hope the Committee includes many who will reject these latter techniques for their arguments on this particular committee.
I hear that the Catholic constituency has again orchestrated a flood of submissions along the lines of their own distinctive theology and doctrine. Again, no doubt. they have been told not to mention the fact that they are Catholic; quite rightly, they fear that a maturing society may not wish to be dictated to by an ancient faith. Indeed, a lot of other churches - including my own - have failed to declare on the matter or just kicked for touch. But the principle of compassion may yet find a place in the hearts of those who make this decision for us.
Here's a funny thing; didn't Jesus talk a lot about compassion?

* Dedicated readers of my blog may recall that one of my respondents observed that asking O'Connor to chair a Committee on End of Life Choice was like asking a Turkey to convene a meeting on the future of Thanksgiving. 



Spot trouble

For upwards of a month recently I was feeling much more exhausted and sleepy than usual. And I bumped into doorways rather more than usual as well.
I'm used to a certain amount of lassitude due to the cancer medications I'm on. And I'm accepting I have a balance problem because of the loss of function in my right ear. But it's all been much worse in the last few weeks.
There's been no significant change in any prescriptions for three or four months. I am not taking anything new or different into my system. In fact, we've reduced two by 50% to help out with similar symptoms.
But, ah, I have been treating a number of spots and small lesions that have come sprouted during the long term of my medication. I've been prescribed Efudix which had to be spread on the affected areas twice a day for three weeks. Beverley, my book-publishing client has been using the same stuff and one day she observed that she had been more tired than usual and someone told her that Efudix might be the problem.
Really, I thought. The stuff is just smeared on my spots, not swallowed. But Bev was right. A quick visit to "Dr Google" has confirmed her suspicion. Apparently, there are several creams that, applied topically (as they say) can nevertheless cause substantial changes in one's awareness. And this one is as vigorous as any of them. Indeed some medicos refused to prescribe the stuff.
We've both finished our three week courses now and are pleased with the surface results. But I think both of us are even more pleased to have our customary energy and general alertness restored!

Monday, April 16, 2018

Around and about with EOLC


Twice recently I've been asked to share my illustrated talk on "From Prostate Cancer to Voluntary Euthanasia" and I've received a very good hearing. A local U3A group was more mixed in opinion and support than the rather progressive Sea of Faith Community of Auckland. The latter's position on issues of faith naturally made them somewhat more responsive to my concern for Choice. At both venues, it was quite a lot of fun to share this light-hearted presentation. 

Then yesterday I enjoyed a stimulating conversation with Prof. Phillipa Malpas of Auckland University; we had agreed on a number of questions that she put to me and I was free to ramble in my accustomed style. The audience was the occasional meeting of the Auckland End-of-Life group so anything I could contribute might have been seen as a bit surplus to the hard study they've already been doing. 

But many said afterwards that the personal implications of cancer came out in unexpected ways in my story. They appreciated some honest and forthcoming comments in areas that are usually tiptoed around. Most responded positively to honest and integrity. Many who spoke to me afterwards had personal concerns in the area I covered. It was at once an energising and humbling experience.

And the Leaf got us over to Roskill and back without a top-up charge along the way! We are loving it.

Monday, March 5, 2018

The Ca Pros Report


A good time today with the chief of our department. My PSA is back up at 60, but that's not higher than it was when I began on Abiraterone/Zytiga eight months ago. It is a little disappointing that this stuff hasn't had more impact. But for the present we will continue on with it, aware that there are no significant things to try when this ultimate medication ceases to be effective.

We are reducing the accompanying steroid medication to 50% to try to minimise  the skin damage that has been occurring. And if my GP doesn't refer the significant loss of hearing in my right ear (since a bad chill on the cruise last month) to ENT dept, our consultant will organise an MRI anyway. He speculates that bone damage from the cancer could possibly be restricting the nerves from the ear where they pass through a small bone tunnel - that's one possibility we didn't think of!

And, routinely, I have to do another bone scan to see if the cancer is making much progress in my spine. And probably a CT scan as well.  I gently object that none of these will actually do anything to halt the cancer, but, heck, he is so keen to keep me as a living, breathing, example of the wonders of modern medicine. And there possibly be some targeted radiation to come. So, Ok, we will cooperate as well as we can while the quality of life is as good as it is these days. We are so fortunate.

As ever, we had a fun time with this engaging consultant.

Thursday, February 15, 2018

Submission Time


Image result for writing submission

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.




Friday, February 9, 2018


Image result for parliamentary bill nz

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?


Thursday, February 1, 2018

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.








Friday, January 12, 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.


Thursday, January 4, 2018

Now the A.C.T.


Image result for end of life choice

The legislative assembly of the Australian Capital Territory has just opened an inquiry into End of Life Choices in the A.C.T.

With the example of Victoria before them, they seem to have moved smartly to follow suit, with a comprehensive terms of reference and a full year before they have to report.

Included in their terms of reference is the provision where Federal Government some years ago withdrew the right of States and Territories to write their own law on this matter. This was prompted by a Northern Territory decision to legalise voluntary euthanasia for its people. This Federal law will have to be overturned before progress can be made in any State or Territory - another big challenge for the movement.

However, in Australia, as in New Zealand, it is becoming clear that new law is no longer a matter of if, but when. The mood of our communities and the opinions of broad samples of our societies seem to be making that clear.

It is right that every jurisdiction should investigate its own needs thoroughly. If NZ is dragging its heels in what some see to be a liberal rush to respond to perceived community needs, let it be because the matter will be thoroughly and impartially investigated, not because some powerful minority groups are exercising undue influence in slowing down the decision-making.


Wednesday, January 3, 2018

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?