Friday, December 15, 2017

77-46 OK

So David Seymour's End-of-Life Choice Bill has passed its first reading - with a substantial majority compared with previous attempts in the last couple of decades. The debate is now a matter of formal Parliamentary action.

But NZ First's demand for a referendum is a bit of a spoiler. It would delay the final law beyond the time I might have wanted to avail myself of it. It smacks of party manipulation of what is supposed to be a conscience vote, too. I suspect that Seymour accepted this for the sake of the kind of solid vote that has been achieved to at least get the Bill off to a Select Committee.

And I note one Member who, having finally declared his personal view against the proposal just a few short weeks ago is listed among the "Ayes". I am sure there will be others who, while not sympathetic to the Bill, would be willing to permit the matter to be debated thoroughly. Good on them, I say. And thanks.

And a thorough hearing we hope to have from the Select Committee on Justice. It would have been a travesty of justice if it had gone back to "Turkey" O'Connor's Select Health Committee which took so long to accomplish so little.

Monday, December 11, 2017

A forthright article by Graham Adams at NOTED has been brought to my attention.  Written about six months ago, it is a very valuable summary of where the End-of-Life Choice conversation has been subverted by those who are opposed.

A most telling point for me was this quotation from the Roman Catholic submission to the Health Committee:

“Religious arguments have their own validity and rationale within a particular faith-based framework. However, we recognise - 
(i) they will not be compelling for persons who do not share our faith perspective and 
(ii) they are not sufficient for shaping public policy in a secular society. 
For this reason our submission will focus on arguments of a social, cultural, ethical and philosophical nature that can be understood and appealed to by all persons irrespective of their religious background.”

On the one hand, this looks pretty realistic as well as unexpected. The views of any church are not given a lot of weight when the nation is considering change even in ethical and moral matters. But Adams points out that   "...anyone who has a deep religious conviction that rejects any human interference with what they consider to be a natural life span ordained by God is not putting all their cards on the table if they don’t explicitly argue that position. Because if they did, they would have to admit that there is absolutely no evidence that would change their minds, no matter how compelling."

I am really interested that the Catholics apparently down-played their religious convictions in the submissions process.  That view is pretty much imitated by other mainline churches who have been conspicuously quiet or cooperatively indecisive during the whole debate. 

Well, I need to state that I have what Adams calls "deep religious convictions" in this matter. I am very clear that my advocacy for some form of end-of-life choice for certain people arises out of those faith convictions. Let's get on with the conversation.

Tuesday, December 5, 2017


Image result for aed definition medical

A few weeks ago our conscientious nursing staff announced that our Village had a new Automated External Defibrillator. Furthermore, it would be brought to every emergency call involving a collapse. If any of us did not want to be resuscitated in certain circumstances, we would have to provide a written record of our wishes. And we should also wear a Do Not Resuscitate tag.

I'd already been down this track with a wristband which I purchased (but don't normally wear, actually) so it was a simple matter to pick up a suitably inscribed dog tag and borrow a chain from Bev's collection. And I am wearing that all the time.

With total paralysis as a probable outcome of my journey with prostate cancer, I would welcome the opportunity of a substantial heart stoppage to let me go. "I mean it. Nurse. If  I've been out of it for some minutes, just keep that thing off me!"  What a way to outflank the opposition who are denying End-of-Life Choice for me and a few dozen others each year...

Monday, December 4, 2017

Oh, the technology around the PSA

After a year or two of delays my General Practitioner practice has opened up Patient Portal for me, so I can go to the internet and view my test results. This big step in patient information should have saved a lot of time for both him and me in delivering my monthly test results.

However, for two months, nothing has appeared in my "lab test results". This is because of another great step in technology. The local laboratory office has computerised themselves with laptops and printers in every booth. Now I can't just pop my test request into a box at reception. I now have to show a special card, take another card from a box, scan that and then leave both until I am called. In the test room, the operator has to scan the cards again to bring up my details, tap in some bits of information and print labels for the phials.

It was a lot easier when I just handed in my test request. Either way, she still has to take samples of my blood. And within a short time the simple-minded report at the high tech Patient Portal would have displayed Nov 2017 PSA 39 VERY HIGH.

At least it would have, if the system had been told that copies of reports had to go to my GP. But apparently that insignificant piece of information had been overlooked. So I have had an hour on the phone to various people today trying to get that corrected.

And the system's analysis that my PSA of 39 is VERY HIGH takes no account of the fact that six months ago it was doubling in two months and would have been heading for 200 so by now. 39 is actually a reduction over the last couple of months. Thank you, Pharmac NZ, for contributing $4326.19 a month for Abiraterone which does seem to be keeping me going.

Thursday, November 30, 2017

Well done, Victoria!

After a rumoured 100 hours of debate, both Houses of the Parliament of Victoria, Australia, have now adopted an End-of-Life Choice Bill to come into effect by 2019.

That's a huge result for this part of the world. Now we need to see how the David Seymour bill will go in the next Parliamentary term in New Zealand.

However, it is depressing to see the amount of discussion that this issue evokes. Even more depressing is that there is nothing new to be said. At a public meeting with our local electorate MP recently, I heard him trot out one or two of the risks associated with this kind of legislation as though they had never been considered. The meeting was Grey Power oldies and they didn't take too kindly to his naive and ill-informed comments.

But there was progress. A few months ago, he had declared on national TV that he hadn't made up his mind. At this meeting, when asked, he said that he had reached a point of view. As a lifelong Catholic, he was now personally against any form of shortening life. But, he said, he would "poll" his electorate when the Parliamentary vote was coming up and he would vote , not according to his conscience, but in the direction indicated by his constituents.

Funnily enough, that's exactly what every one of half a dozen candidates for Parliament said when asked for their personal views a few months ago by the same Grey Power members. But not one candidate described how they would organise this "poll". None assured us such a poll would be properly managed by a reputable profession firm. None even thought to mention that their poll would not be limited to members of their own party, or their own church or other easily accessible group. Sounds like a cop-out to me...

I'm pleased that our MP has now reached a point of conviction he can own up to in public. I don't share his view but I respect it. I certainly won't seek an audience with him to try to change his views.  And, personally, I would be happy for him to vote according to his conscience and not according to some mish-mash of a poll that might or might not represent the wide range of public opinion in any electorate.

I just want to see some action in response to the declared wishes of the vast majority of the population over several professionally managed opinion polls over a decade or more. Let's get on with the vote.

Thursday, November 9, 2017

A Literary Adventure with Parkinson's Disease?

Some time ago I made a commitment that I would not start another major project that might put me under pressure to finish before my Use By date was up. However, my Oncologist's challenge to do something worthwhile if I could enjoy another year of good quality of life has, in part, dropped me into another fairly large project.

One of our Village residents has recently prepared a substantial paper on a self-help regime that she and her husband worked on after his diagnosis of Parkinson's Disease. They have experienced some remarkable developments and she has recorded their story in considerable detail. Her draft has received some significant commendations from professional people in the field. She has now come to me for some suggestions about how her story could be told.

We're first going to spend a little looking at what she's written and how it might be re-shaped to help other couples experiencing this condition. Certainly, my interest has been piqued. One can't help but be inspired by her passion. It looks as if we are going to be travelling an interesting road over the next few weeks.

Wednesday, November 1, 2017

On the bus this morning

Image result for at metro bus orewa
This morning I took a free bus ride to Orewa to return a library book (Anne Salmond’s “Tears of Rangi”, an amazing and powerful account of “experiments across worlds” in our tentative bicultural journey in this country). To take the car would cost about 90c in electricity and that seemed extravagant and unnecessary.

Waiting at the bus stop for the return trip, two of us were extravagantly blessed by a long-haired, bearded, barefoot, not very kempt fellow, who from three metres away wished us a very cordial and enthusiastic good day “following in the steps of Jesus”. When he came by again I asked him to what part of the various flocks of Jesus did he belong. “Oh, just the Jesus Way”, he said. Now, as a progressive Christian, I should have been satisfied enough to hear that.

But I still followed him onto the bus and sat beside him, leaving about 42 seats for the other three passengers. I invited him to talk a little more about his faith and way of life but there was nothing forthcoming. I ventured a few thoughts of my own but he remained non-committal. I introduced myself as a retired minister but on reflection I guess that was never likely to help.

I don’t know what I expected. But I guess I hoped he had something more to share than just the passing catchphrase, no matter how elegant...

Tuesday, October 31, 2017

The CaPros Report

Just back from Medical Oncology. My PSA is down slightly from 57 to 43 which still seems pretty high to me. We are continuing on Abiraterone and half a dozen other things. Now we're adding in some medication for severe back pain the last six days - this is occurring in the right place but it may or may not be cancer-related. If not it will clear up in a few days... Nothing seriously depressing in all that, for which we continue to be grateful.

Afterwards we had a pleasant drive out to the airport for some free car electricity, some shopping, a trip through the Waterview Tunnel and some country driving back to home.

Thursday, October 26, 2017

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.

Sunday, October 22, 2017

Action in Victoria!

It was exciting to hear recently that the Lower House of the Parliament of Victoria, has passed their Voluntary Assisted Dying by 47 votes to 37. Their bill must be approved by the Upper House so it has some distance to go. But this is a great step forward,  originating from the work of a Committee that was set up about the same as NZ's, a couple of years ago.
It's going to be a slower process in this country but at least the David Seymour Bill is on the Table and must be considered, probably next year. The big question for us will be, will it be referred to the Health Committee that spent so long hearing submissions that were unsuccessful in challenging their obvious prejudices, or can it go to a different Committee this time?
Apparently that's is a possibility. But either way, it looks like another substantial round of submissions lies ahead ... Well, I'm ready!

Wednesday, October 18, 2017

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.

Tuesday, September 12, 2017

"Turkey" O'Connor strikes again!

Image result for clip art turkey at dinner

So "Turkey" O'Connor has struck again...
It was appalling that he did not stand aside as Chair of the Parliamentary Health Committee on End of Life Choice a couple of years ago - he forfeited his moral right to head up the investigation when he made a public statement of his personal point of view. It was worse when he urged Catholics to send in "submissions" favouring his point of view. It was pretty bad when his Committee produced a mealy-mouthed report that did not really move the issue in either direction. And his public statement after the Committee finished its work was a masterpiece of subterfuge and misstatement.
Now he has revealed that after listening to some 1800 personally presented submissions he still doesn't understand the distinction between end of life choice for terminally ill aged people and the desperate plight of physically well people who feel that suicide is their only choice.
When I first criticised O'Connor for maintaining that it was OK to publicly promote a point of view at the same time as presiding over an investigation into the issue one of my readers observed that it was like asking a turkey to preside over a committee discussing the future of Thanksgiving.

Well, to mix a metaphor, the turkey hasn't changed its spots

Friday, September 8, 2017

Electric Gridlock

One of the amazing characteristics of Electric Vehicles has already made itself known in our household. It's not the limitations of range - it's the astonishingly cheap cost of running.
We've clocked up 1000 kilometres in a month - mainly because an overnight charge which adds three or so dollars to our power bill will give us an all-day outing all over the gorgeous hinterland beyond our suburb. And we've done that almost every fine day.
We took a couple of friends on a bit of a short trip around the local suburbs and realised that 12 kms added up to just over ten cents each. We've shown the car off quite a lot and there's enormous interest.
Indeed, one of our neighbours who had a quick introduction to electric motoring in our Leaf has just come home today with his very own BMW, a beautiful, large but very compact vehicle.
Only now have I realised that if a large proportion of the motoring public discovers how much cheaper an EV is to run than an ICE (Internal Combustion Engine to you!) Auckland's gridlock can only get appallingly worse. Why would you bother with a bus when the cost of driving your EV may be actually less than the busfare?
Perhaps we had better promote EVs a little more cautiously.
But it's a lovely way to go....

Tuesday, August 29, 2017

The MCRPC report

   Drove the Electric Blue over to Medical Oncology at Greenlane today. Quite a big trip for all three of us, but a short fast charge and a hamburger at McDonalds set us all up for a lengthy, leisurely return home via Sylvia Park shopping centre and then along the best waterfront drive in the world on a really gorgeous day.
   Once again, we are amazed at the professionalism of the consultants we meet. Their blend of technical competence and personal empathy impresses us every time. This one had done her homework thoroughly: she was even aware of my struggles with my conscience over the decision to go onto Abiraterone and she had a printed copy of notes I optimistically emailed to the staff secretary only last night.
   We had a really helpful conversation as she went over my few concerns and we discussed changes in a couple of meds. We are going try a different steroid instead of Prednisol and she has agreed to my suggestion that we reduce the amount of anti-depressant we use to control the incessant hot flushes that were so much a part of my life up until a couple of years ago. There's no way I would want to return to that lifestyle but Venlafaxine  seems to be bringing some other unwanted side effects.
   For the first time in fifteen years my weight is down a little, with no apparent explanation. Most of the meds would be more likely to add weight than take it off. But my PSA is pretty stable at 56, though that is also just about as high as it has ever been.
   However, if we made the decision on Abiraterone for the sake of quality of life there's no absolutely doubt that that objective has been achieved. It's being a terrific year.

Friday, August 11, 2017

Managed death

Image result for wilding pines nz
This afternoon I heard Hon Maggie Barry, Minister for Conservation, describing the problem of dealing with wildling radiata pine trees damaging the conservation estate. She called it “managing” the problem and then added, “Well, killing them”

I recall that when my Dad was in the final stages of life, his doctor told me in an aside, “This is what we call a managed death”. I knew what he meant. So, I think, would the Hon Maggie. I should have stayed to ask for her personal views on end of life choice.

Dad should have had choice months before his “managed death”.  I hope we change the law so that I will have choice if it comes to a slow death with total paralysis....

A Lost Opportunity

Image result for voice for life nz
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.

Wednesday, August 2, 2017

No Change, says the Committee

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The Parliamentary Committee on Health has tabled its report in the House. It has not recommended a law change to allow a few people have some choice at the end of their lives.

That's no surprise. Members of the Committee warned those of us who were making submissions that they didn't expect to produce any dramatic proposal. Their best hope at that time was that if David Seymour's bill should come up in the ballot box, Parliament would value the huge body of data the Committee uncovered as it listened to a thousand personal submitters.

Apart from the obvious bias of the Chair, the Committee must be congratulated on their openness to listen to everyone who wished to speak to them. They put themselves under considerable pressure to enable widespread opinion to be canvassed.  Now that that the Seymour bill is on the table their work should provide all the material Parliament could possibly need as it decides how to handle the matter.

But, it seems, that will now wait until the election puts together a new Parliament. Well, the few dozen who may benefit from a change in the law are used to waiting...

Saturday, July 15, 2017

That TV1 News Item Last Week!

If blog readers happened  to miss last night's TV news item, here's the link, kindly provided by Political Reporter Katy Bradford, whose team made such a splendid job of the piece.

The broadcast ended a very busy week for Bev and me. We had at least two things on each day and there was some difficulty organising a date to do the camera work. Then it had to be cancelled because they couldn't get a camera. The wild storm over the whole of the country dominated the news for three or so days and the piece couldn't be aired until Friday.

And that day we were using our retirees Gold Card to bus and train right over to Penrose to pick up our cute five-years old all-electric Leaf. We walked back into the house, turned on the midday news and there was my face all over the intro piece. Happily, they found something better for the 6pm news.

But it was a privilege to have the opportunity to respond on behalf of End-of-Life Choice NZ. I wanted to support the view that we've heard all the arguments on both sides. It's now time for the Politicians to make up their minds and vote. David Seymour's bill popping up out of the ballot box a few weeks ago has made it an election issue  It's time has come.

Wednesday, July 12, 2017

My response to Amitav Ghosh's THE GREAT DERANGEMENT

This piece turned out to be not so much a book review as a sermon. But perhaps that's the kind of response Ghosh would like...

The Great Derangement
Climate Change and the Unthinkable                                             
Amitav Ghosh     University of Chicago Press 2016
Ghosh is an Indian writer of considerable academic distinction. His main output has been historical novels of great length, precise detail, daunting length and fascinating descriptions.
This book, The Great Derangement, is not a novel but enjoys the same attention to detail. It deals with climate change but clearly from an Asian perspective. He writes in three sections:
Great climatic events have occurred before. The biblical story of the Flood should say something to us! In 1978 Ghosh was right at the epicentre of the only known tornado ever to hit Delhi. Not much is known of the Mumbai cyclone of 1882 where one eighth to one quarter of the population of 800,00 died — primarily because the British encouraged the population to move onto the buffer islands of the delta. In 2005 and 2015 vast deluges have completely overwhelmed the drains of Mumbai.
But get this: in about 1300AD there were stone tablets placed along the upper shore of a coastal valley in Japan. They proclaimed: nobody should build a house below this level. Not only did the people build a city on the waterfront but they established a nuclear power plant there as well. We all know what happened at Fukushima in 2011.
The colonisers of the last three centuries imposed their transport needs on people who often knew better than to live near the shore. All the world’s major cities of the last three centuries have been built close to the sea routes. Colonialism and the coal economy have enforced development of this vulnerability. We continue be de-ranged from known and obvious historical reality.
The great majority of potential victims of climate change are Asian. Rising sea levels could cause relocation of 50m in India and 75m in Bangladesh. 24% of India’s arable land is already turning into desert. Ghandi, 1928:
God forbid that India should ever take to industrialism after the manner of the West. If an entire nation of 300m engaged in similar economic exploitation (they) would strip the world bare like locusts.
But Asia presses ahead with all manner of Western-style medicine, higher education, nuclear armament and space exploration. The standard of living expectations of so many fortunate Chinese are an obvious case in point as we see the massive residences going up in our own suburbs.
In the period of dramatically rising emissions since WW1, the literary and creative elite have let their output be “deranged” from climate change realities. Only a handful of novel writers, dramatists and artists are dealing with real possibility of climate change and they are usually Sci Fi rather than mainstream. What we might call the prophetic role is gone from the creative culture of most nations.
But do we notice? We know: Where were you when Kennedy was killed? Or: Where were you during 9/11? But do you remember the month when CO2 in the atmosphere reached 400ppm? The last time that was so high there was no human life on the planet. We live on the edge—we separate ourselves from the unthinkable.
Widespread denialism on the one hand and vigorous activism on the other clash to produce another derangement which seems to ensure there is no political change.
Strangely, the American Military has somehow sidestepped this political derangement and is investing billions in alternative energy strategies.
As an Asian writer, Ghosh is particularly cynical about the “armed lifeboat metaphor”–that some of us will be lucky and will survive—if we don’t let others get their hands on our resources.
In a fascinating criticism of the Paris Accord, Ghosh compares it with an encyclical from Pope Francis produced a few months earlier the same year. “We fail to see the deepest roots of our own failure”... There’s no language like that in what he calls the Paris Accord’s “waterfall of gerunds”—recalling, welcoming, recognising.
At the very end of the book Ghosh appeals for the great religions of the world to take up the issue. Countries will not do it—either by themselves or internationally. They are structured — deranged, you might say—to look after their own people. Only religions span the world. Religion may be the world’s only hope.
Do we need old-style evangelists?

What am I going to do? 

Almost all NZ's electricity is produced from renewable resources, so in two days we are taking delivery of an electric car....

Friday, June 30, 2017

The Ca Pros Report

Otherwise known as the Metastatic Castrate Resistant Prostate Cancer report (I am now officially diagnosed as MCRPC.

After one month on Abiraterone my PSA is not significantly down but at least it's what the white-coated ones call "static". And, checking my pulse and blood pressure once a week and measuring my ankles now and then, I seem to have had no discernible side effects. So far, so good.

Part of taking out this new lease on life involved accepting nomination for the Village Residents' Club Committee and at the annual meeting yesterday I was elected. That'll be an interesting and challenging experience as the previous committee was not highly regarded. But there will be some people who won't necessarily want a whole lot of change at once. We are going to have to take it very quietly, I suspect.

Another annual meeting tomorrow. I expect to be coming off the Community Patrol Board  but will continue with media and promo work. Which will probably mean I will have to go to meetings anyway! But it's good to see some new people offering... and we have a very substantial team of volunteers these days as the profile of the Patrol is being raised in the community...

Thursday, June 22, 2017

I’ve just received the last issue of Budgetline. This magazine has been coming to me for longer than I can remember in my rather remote capacity as a Life Member of New Zealand Family Budgeting Inc.
The short articles in this issue are quite poignant as it has been given over entirely to the Head Office staff and other key people who are losing their positions in the big re-shuffle that is taking place. Again and again I read of disappointment that the organisation which they have served, both as paid staff and volunteers, is losing its identity next week.
In 1973 I wrote the first letter that went to about 25 organisations with a proposal to form a national Federation. Later we got a couple of dozen people together in Wellington for a day. And what an outcry there was! They were afraid they’d lose their autonomy, their personal involvement, their idiosyncratic workers. They didn’t want to have a national boss...
But it was all about money. Every group needed some financial assistance for expenses for its volunteers. Some wanted to pay experts to do the job. Government would only give assistance to the 30 or so groups if they presented an organised front. So, with mixed feelings, the Federation came into being.
It’s been a huge success. It has lifted standards, provided proper supervision and training and widened the work. And, to the concern of some of us who were around in the 1970s, it has absorbed millions of dollars a year of taxpayer funding to achieve this.
But there are other groups involved in this kind of work who have never affiliated or don’t qualify for affiliation. Government now invites all family budgeters to come together in some much broader organisation. So the Federation, which we brought into being under pressure from successive Governments, will next week be wound up because the Government wants to move in a new direction.
It’s touching to read the stories of those who have worked in the Federation in the last decade or two. But times have changed, politics of voluntary community services have changed and the need in the community is more vast than any of us could have conceived in 1973. So some of the Federation’s prized principles will be surrendered and unfamiliar territory will have to be traversed. At the end of this month, everyone will move on.
I salute those who transformed a modest voluntary operation into the NZ Federation for family budget advice of a very special kind. As it moves on, I hope its people will infuse the new organisation with a sense of personal service and commitment. This new venture must not become just another quasi government department.

Dave Mullan is author of
The Family Budgeters, a personal account of the work of family budgeting from the 1960s to the establishment of the Federation.  As one of the last “steam budgeters”, Dave was asked by the Federation Office to put together some kind of record of the earliest days of this remarkable movement of voluntary community service. That he was able to achieve this in 2015 is all the more important now that the Federation itself is moving on.

A Small Qango, the story of the Home Budgeting Advisory Committee to the Minister of Social Welfare, 1977-1987.  Dave served on this Committee for its full ten years, eventually becoming its Chair. It was the first attempt to direct public funding towards voluntary family budgeting groups. In charted new paths for a Quasi Autonomous Governmental Organisation.

Sunday, June 18, 2017

End-of-Life Choice and end of Voluntary Euthanasia Society

A quick AGM yesterday disposed of the name with which most of us have been a little uncomfortable for some time. The word "euthanasia" seems to be a turn-off for a lot of people. So, what used to be the Voluntary Euthanasia Society of New Zealand is now to be known as End-of-Life Choice. With hyphens.
The Committee is the same, the objective is the same, but we have chosen to eliminate an unsatisfactory expression.
Ironically the guest speaker in the afternoon public session. Dr Jan Bernheim, used the word "euthanasia" liberally and without qualification. But his fascinating talk made it clear that Belgium has moved far beyond our sensitivities around the use of the word. And they have certainly moved far beyond our tentative reaching out for some new practice that will express the growing concern for suffering people to have some choice about the ending of their life.
Before 2002 Belgium did not have the highly developed hospice movement that has made such a different to the quality of death for some decades in this country. But when they did address the issue of dealing with the last stages of life they had the opportunity to include a style of what they cheerfully call "euthanasia" along with a wide range of palliative care.
This linking of palliative care with doctor-assisted-death delights me. I've been feeling for some time that the body that is already dedicated to dignity in dying is the body that should embrace the opportunity to carry its objectives out to the full. Hospice, far from railing against physician-assisted-death, should be the organisation that develops a compassionate philosophy of patient choice about life's ending and introduces practical opportunities for that choice to be exercised.
When former Prime Minister John Key said "NZ doesn't need voluntary euthanasia because we have Hospice" he demonstrated a total misunderstanding of both and uttered a forgivable lie. When Hospice says NZ doesn't need any kind of doctor-assisted death, they also are fumbling with the truth. Worse, they are denying their organisation the opportunity to take a great step forward in their own mission of improving the ending of our lives.

Friday, June 16, 2017

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.

Friday, June 9, 2017

Another dip in the box

Another bill that has been just drawn from the Parliamentary Ballot box is also of interest to me. It's a bill that would legalise the use of medicinal marijuana... I might be glad to have access to that somewhere along the way before I decide about "medical aid in dying" (as I would like it to be called in this country).
But that's looking ahead at the moment. So far, have hardly started into the 720 doses of Panadol I was accidentally prescribed a few months ago.

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.

Tuesday, May 30, 2017

Believe it or Not

Today we went to Medical Oncology and met again with the prostate cancer team leader. They must have heard of our discomfort about going on Abiraterone and sent along their best operative!
We’d met this charming fellow last year when he introduced me to two new drugs that turned out to be absolutely life-changing. So we had very good rapport and plenty of confidence in him. Especially when he said he was determined not to try to talk us into accepting a medication we were not quite happy about.
We canvassed the alternatives: chemo is an option but we had already decided that was not for us. Targeted radiation on the spine is a possible option if we don’t do anything else but the recent scans did not suggest that there was widespread cancer at this stage.
So we turned to Abiraterone. We worked through our dozen or so questions and were surprised to find that our consultant was a member of the team that did the first trials on Abiraterone seven years ago in UK. I had read of these on the internet and had been looking forward to finding more about it year by year ever since. He’d had extensive experience with hundreds of men using the drug, not just the limited numbers who have qualified for it in this country. It was no trouble for him to answer every question with illustrations out of that experience.
Serious side effects, he said, were virtually non-existent. It became clear that a lot of our misgivings about side effects and quality of life were, in his experience, not really appropriate. Benefits in slowing the growth of the cancer were not great but measurable. Extra life expectancy, yes, is only a matter of months.
We queried him about the advantage of commencing this drug when I have no significant symptoms of the cancer—beyond a couple of bouts of back pain recently. The fact that this month’s CT scan didn’t reveal any great advancement of the cancer in my backbone also made us wonder if this was an appropriate time to start this kind of medication. His view was that using Abiraterone while I am in good shape is more likely to give another year or two of good quality of life than delaying it until I need more frequent medication for pain.
Also, we found that we can control the amount of medication I take and he mentioned some ways in which I could get extra benefit from what I do take. And he thought that, if it turned out to be reasonably efficacious, we might plan for a course of up to twelve months. It would not be for ever. Indeed, he said, if the cure seemed to me to be worse than the disease, I could stop at any time.
He said that in selecting the limited number of men who may be suitable for this expensive medication, his team take into account the specific elements of the patient’s cancer and overall lifestyle. He reminded me that my cancer is only 7 out of 10 on the Gleason scale so it seems to offer a realistic target for further hormone treatment. He also suggested that my lifestyle, general fitness, knowledge and attitude would seem to make me a better candidate for the drug than many men half my age.
He even challenged me with the thought that it would be a good thing if the drug enabled me to continue to speak out about the issues of life and death which are becoming more and more part of my own personal experience. (Flattery will get you everywhere, I thought—but I will think about standing for the somewhat dysfunctional Village Residents’ Committee!)
As have all my friends, he urged us to keep the massive cost of this drug out of our deliberations. My ethical concerns about the disproportionate amount of the country’s Health budget that is spent on people at and above my age remain. But I know that if I decline this offer it will not actually make much difference to the health prospects of middle aged men with prostate cancer and it certainly won’t provide breakfast for a few more school children.
Certainly, life —and the NZ State—owe me nothing. At my birthday last week I passed the average life expectancy of NZ males. And we know that men with Metastatic Castrate Resistant Prostate Cancer (MCRPC) generally die within two years—I am halfway through that period already. In a sense we have nothing to lose. And perhaps I still have some good reasons to remain active and well.
So we have accepted a prescription and will make a start.

But chemo? — forget it!

Monday, May 29, 2017

Suicide Statistics

While the official in charge of Mental Health in NZ is doing his belated homework and trying to find out how many people committed suicide each year on his watch, I'd like him to tell us also how many of those suicides were of suffering, elderly people who, fearing they were about to lose control of their lives decided to take matters into their own hands.
Other more conscientious researchers are telling us that this number is increasing substantially in this country in the absence of any serious plan for introducing a more orderly alternative. It would be interesting to know if the present ballooning in the number of suicides is actually of the young people with whom entertainer Mike King does such a great job. But it's possible that the increase could be among the suffering and scared elderly, in whom nobody seems much interested. We need to talk more about this....

Thursday, May 11, 2017

PSA down? Really?

Well, yesterday's PSA test, exactly a month since my last one, is actually down from 60 to 56. It's not a significant change but it's better than another "three-month" doubling. That would have been pretty serious.
We have an appointment for next Tuesday and the big question of what happens then will be high on the agenda. We have a large list of issues we wish to discuss. But the gist is that we continue to be comfortable about resisting further intervention just for the sake of three months of extra life at the end... Whenever that might be.
We don't want to seem ungrateful to a benificent health system but the outrageous cost for those additional three months of life does not seem to be justified in someone of my age and relative health. If I felt a whole lot worse because of the disease I suppose I might feel differently about medicating to postpone the inevitable... But the reality is that for nearly fifteen years my quality of life has been affected only by the side effects of medication, never by any symptoms of the disease.
Abiraterone is maybe too much, too soon...

Friday, May 5, 2017

Light at the of the tunnel?

A recent newsletter from End of Life Choice NZ reports that there may be a shift in the views of the Parliamentary Committee studying ending of life in NZ.  At the submissions last year, Bev and I heard at least one Committee member say firmly that there would be no recommendations coming to Parliament as a result of the Committee’s work. They would merely collect data and pass it on to the House. 

But now, according to Chair Simon O’Connor, who has made no secret of his outright opposition to any change in the law, there seems to be a change of heart. He is quoted as saying he suspects the Committee will actually make recommendations. 

“I think at this stage it probably will go further than simply (ask) the House (to) take note of its report," he said. "I think there are some elements coming through - most members, if not all, think there are some things we should be recommending further here.” 

This is a more encouraging view than we have heard previously from the Committee. It will hearten members of End of Life Choice (the upcoming name for the Voluntary Euthanasia Society NZ) as they have their annual meetings next month.