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....

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...

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.

The Ca Pros Report

Off we went to Medical Oncology today and the news is not great. Our specialist was delighted to find I am still feeling so well, have no pain, and am enjoying such an active life. The bone scan a few weeks ago showed, he reckoned, nothing very significant.

But an extra PSA test I organised for myself yesterday showed a 25%  increase in only five weeks since scoring an unexpected 50. So after a year of stable PSA around 25 – 28, in just three months I have got to 60. The disease may not be showing itself in pain or disability but it is clearly becoming much more active.

We will continue with the quarterly Zoladex as the primary agent to reduce testosterone on which the cancer feeds. Now, Simon summed up our future options as: 

1. Chemotherapy - to treat my whole system with cancer-reducing medications

2. Abiraterone - to restrict even more the production of testosterone, 
    or possibly 

3. Some targeted radiation therapy to tackle identifiable cancer growths. 

    We agreed there was also:

4. Do Nothing. 

At the end of the day, any decision would be mine.

Bev and I left with four pages of information on Abiraterone — nothing new in there to anyone who’s done his research— and a plan to have a CT scan in a month and another discussion after that has come through.

So we have plenty to think about. Up to now I have been resolved that the substantial cost of Abiraterone – even if met by a generous public health system – does not justify an extra three months’ life-expectancy. 

How do I quantify another year or two of reasonably active life and an extra three months at the end against what $100,000 could do for other younger people in the health system with other less expensive needs... For someone of my age and convictions, that is a moral and ethical problem. The system seems to say it can afford to make the offer to about 1000 men a year and invites me to be one of them. 

Does that make it right?

There, but for the grace of God....

I see Susan Austen’s case has been postponed again. She’s been charged with two offences of importing a Class C drug, sodium pentobarbitone, well known as nembutal, the drug of choice for people who may wish to end their own unbearable suffering. Her apparently straightforward case has already been adjourned since charges were laid last year.

Now the Police have asked for more time to bring another charge. Perhaps they are just "kicking for touch". Perhaps they have been warned they have a rather shaky case. Perhaps they are still shrugging off the huge public criticism for their disgraceful and embarrassing Operation Painter last year. Perhaps they are realising that this minor court case could become a major public issue in an election year. Well, why not?

I think if I had been living within a reasonable distance, I, too, would have been protesting in front of the Courthouse the other day. Not because Susan hasn’t done anything wrong—she appears to have broken the law, all right. But because she was equipping herself to do what I want to be able to do legally myself. 

Oddly, having the stuff is illegal. Using it, isn't. 

Operation Painter

In our country there is a growing number of unnecessary suicides of elderly people who would rather leave this life prematurely by their own hand than trust their last days and weeks to the health system.

So several months ago Wellington Region Police apparently resolved to make contact with people connected with Exit International or the Voluntary Euthanasia movement. They called on at least one dear old lady who did indeed own a balloon inflation kit, complete with a supply helium, readily available from her local shopping centre. The photo is her bold response. 

The Police went a good deal further with Operation Painter. This involved a very heavy-handed and probably illegal road block - ostensibly a blood/alcohol check - to collect names and addresses from people who had been attending a meeting on ending one's life. They appeared to be building up a Police dossier of (elderly) people likely to harm themselves. All this at a time when a Parliamentary Committee was already deep in discussions about "ending one's life in New Zealand"...

At the time I facebooked:  "As a member of the local Community Patrol I am in and out of the nether regions of the local Police station more than most people and know some of the officers by name. It will be interesting to see if I receive such a visit. Maybe I should just pop in and ask them if I'm on a list..."  Well, I haven't had a call yet.

Operation Painter raised headlines around the country and there was considerable outrage. The affair was referred to the Independent Police Complaints Authority which has apparently not been able to reach a conclusion in eight or nine months. This timely delay could help to ensure that medical aid in dying becomes an election issue this year.

Goodbye to the Godwits

Over the years when I had more time for posting to this blog I commented several times on the amazing migratory feat of the local bar-tailed godwits. 

Last night Bev and I took fish and chips and cordial down to the real Red Beach last night and sat in the car and watched the very smooth sea. The gulls even sat on our bonnet in vain hope of a snack.

Gazing out at the sea we had the strange feeling that the distant surface was moving. Suddenly we realised we were seeing greyish birds on the wing. Out came the binoculars and there was a thin straggling column flying northwards low over the water. It continued for several minutes.

By chance, we had happened on a major part of the annual migration of bar tailed godwits. This flock would probably continue north and link up with others from around New Zealand, heading for the Arctic tundra.

Of course, as we discovered a few years ago, the really incredible part is that their newly raised young ones will fly back here by themselves in six months.

Report a bad Driver

I work with our local Community Constable in producing joint articles for a local monthly paper. Recently we considered promoting the "Report a Bad Driver" form that is available on the Police Website. I have made several of these reports, mainly involving dangerous or blatantly illegal overtaking.

The idea is that motorists who observe bad driving can make a formal complaint with all the details. The procedure then requires Police to visit the alleged offender and discuss the incident with them. Of course, this involves quite a bit of work. And the discussion can soon become a kind of "He Said" but "I Say" thing. Apparently the results are not very often conclusive.

I can understand that it could easily consume Police time that will not have any significant outcome. In most cases it would only be an irritant for the offending driver. So we decided not to promote the form with a magazine article.

But encouraging drivers to be responsible for each other doesn't seem to be a bad thing. If the present system is not efficient why not adjust the procedure so that reports are simply noted in a file for the vehicle concerned. When a consistent series of, say, three significant reports accumulates on the file within a defined period, apparently involving the same driver, there could surely be some justification in the Police taking the matter up with the person concerned by letter or, in some cases, a personal visit.

Let's not throw out the baby with the dirty bathwater.