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.

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.


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

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(!)