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.

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:

Stories:

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.

History:

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.

Politics:

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....

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...

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.

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.

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.

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.

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!

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....