Submissions - and the Debate

Big day yesterday. 

We left home close to 1pm and arrived at the Hearing Venue at 3pm, an hour early, to get the feel of the proceedings. However, very wet weather had obviously disrupted the hearings and I was called nearly an hour early.

The two women Committee Members in our room were gracious and really helpful to some of the less confident submitters. We stayed for an hour or two; and it was fascinating to hear the different points of very personal views. Consistent with the overall submissions, the opinions ran about 2:1 against any law change.

But in a break I had a short chat with a young lady on the other side. I suggested that agreement would never be reached on the issue itself and she realised that she’d never thought about that. She probably wasn't going to change everyone. So she then saw she had to consider whether we should change to law to allow for natural differences exactly because there is no agreement. That's what Choice is about.

The most moving moment was when our room finished and about four of us went into another room just to watch. (The Committee was taking hearings in three separate rooms—250 five-minute submitters between 9am and 6pm!). One lady broke down before she could begin her talk and another one from our room went and sat beside her and held her hand. What neither realised at that moment was that the supporter was on the other side of the issue...

Apparently that spirit did not always prevail. One or two people felt that their reception among the audience was a bit hostile. One person at least happened to be in a situation where her voice was the only one on her side and she felt distinctly discouraged. Some of this could have been prevented if everyone had been given more notice of the hearings (mine was only four days!) so that supporters could have attended.

But on the whole, this experience of democracy in action was satisfying. I pay tribute to the MPs who sat throughout this long day and still had to disperse around the country to their homes afterwards. Probably they learned nothing they didn’t know already, but they paid respectful and sympathetic attention to everyone who had asked to make a personal impression.

It was a little anticlimactic to join a few dozen people at the Community of St Luke in Remuera in the evening. They offered a debate between Hon David Seymour, the promoter of the bill that is sitting in Parliament’s Ballot Box and Matthew Jansen, the Secretary of the Care Alliance. Between them was not much agreement, as might have been expected, but also, a wide range of conflicting statistics from the same countries.

And there was an astonishing claim that “If you can give me the name of one doctor who has hastened the death of a patient (“murdered” was the word used) I will go to the nearest Police Station and have him (sic) charged”. I could have given him names of two or three compassionate and practical medicos and someone else said she could name four. But considering 11.2% of NZ doctors admitted in a survey last year that they had taken just such steps, the ridiculous offer was just grandstanding and illustrated only the lengths to which one can when one’s case seems threatened.

Again, the evening produced nothing new. We’ve heard both sides of it all before. Parliament just needs to make a decision. Our best hope is for David Seymour’s bill to pop up out of the Ballot Box. I suspect that the Committee will produce a huge report but no firm strategy for Parliament.

What I said to the Enquiry

My Five Minutes Spoken Submission
to the Health Committee   4 pm 14 Oct 2016

Introduction

I am Dave Mullan, of Red Beach, retired Methodist Presbyter, 81.
I have advanced prostate cancer.

Just over a century ago, my great-grandfather, TW Attwood, was in a deputation to the new Parliament House. He would have argued a strong case—not like mine, which probably doesn’t break any new ground. But the family say he also had great passion. I hope something of that passion in a parliamentary office long ago will be apparent in this submission.—

Tetany Spasms

After an emergency surgery, I woke in the middle of the night with the most appalling pain seizing me. Every muscle between my knees and shoulders seemed to be trying to tug on the massive abdominal incision and tear it apart. It was like every muscle was cramping at once. I couldn’t move for the moments of the attack, couldn’t even breathe, or speak or cry out. I immediately realised this was not normal post-operative pain. Something in me was creating it. Only with a conscious effort of will was I able to unravel the muscles, like easing a possum skin off the nailed board on which it’s been stretched. It took time and the pain continued throughout.

Although I reported this problem to the surgical Rounds team at 8am — and in fact had an episode right in front of them while they stood round the bed — not one of them offered any comment. Subsequent conversations with the pain specialist failed to deal with ongoing attacks for nearly 48 hours.

One night a nurse really listened to me and I was prescribed a drug that stopped the attacks. But there was still no diagnosis. Months later, a very knowledgeable nurse friend suggested that I might have experienced tetany spasms. I surfed the net—as you do—and found a surgeon who had experienced the same very rare symptoms after his own operation and was appalled at the level of pain.

Prospect

If that kind of pain, even in short spasms, is what I might expect when this rather ordinary disease overtakes me some time, I don’t want it. If something like that is what broadcaster Andrew Denton described of his father’s agonising death, I don’t want it. From my own experience with the excruciating agony of those terrifying spasms, I don’t have any confidence that pain of that level will necessarily be palliated or even recognised. Nor do I believe for a moment that pain is a necessary part of the very ordinary business of dying in the modern age.

Reflection

Looking over my submission, I don’t wish to change much. But I hope you will review carefully the sections on—

·       the Slippery Slope and Change and their risks and effects;

·       the suggestion that much traditional religious thinking is not helpful in this debate in the context of a secular society;

·       my claim that medicine, Government, and some Christians are trying to have a bet each way;

·       my view that full agreement on the issue should not be expected

·       but providing for choice is a demonstrably fair and reasonable expectation for some terminal patients.

In every waiting room in the Health system I’ve seen posters encouraging me to become involved in my health decisions—until my last days when my wishes will suddenly expire like a twelve months’ old Prezzy Card. Please now take that further step and allow me a little simple responsibility in my dying. Please extend my personal choice to that life-defining moment.

“Looking Great”

All through my journey with prostate cancer people—becoming aware of my rising PSA said, “But, Dave, you’re looking great.”  They didn’t realise that it was hormone medication that was filling out my face so of course I looked good. Recalling the gaunt, emaciated faces of many terminal cancer patients, what I ask of you now is that after my death, anyone seeing me might say, “Gee, Dave, you’re looking great” — because you gave me the choice of dying with dignity.

And, oh yes, my great-grandfather’s petition to Parliament? The following year, exactly a century ago, Parliament granted their request which led to sweeping changes in the fruitgrowing industry. Tongue in cheek, I suggest that is a great precedent for your Committee today. You, also, could create significant change for our country by encouraging Parliament to permit me and other terminal patients to have some say in our end of life.

Dave Mullan

28/101 Red Beach Rd, Red Beach,  0932      +64 9 426 7562

Anyone remember Ecclesion?

Another fascinating talk we heard last week was from Dr Greta Vosper, minister of West Hills Uniting church in Toronto. Her extreme progessive position has led her denomination to resolve that she must leave her congregation.

But what interested me was one aspect of Greta's description of her congregation's Sunday mornings. They consider issues that are real for the congregation. They  draw freely on other inspiration than merely the Bible. And when business decisions come along they make them on the spot. There is no church meeting nor council so no group of individuals in assigned responsibility to make decsions on behalf of the whole community.

It interested me immediaely. Here was a working model of the Ecclesion Church that I proposed 25 years ago for small congregations.  I reckoned the contemporary church should devote its only gathering time in the week to elements of worship, education, fellowship and doing necessary business.  I'd still be very comfortable in that kind of gathering.

Medical Professionals will Cope with Assisted Dying

Many New Zealand medical professionals are surprisingly supportive of Assisted Dying in appropriate circumstances. Last week Bev and I attended a presentation by Dr Philippa Malpas on the responses of 1000 Doctors and Registered Nurses to a fairly searching questionnaire.

Some of highlights of the results were:

Around a third of doctors and half the nurses “strongly” or “mostly” agreed that AD should be legalised in NZ—assuming proper protocols were in place

A small proportion of the doctors and nurses had already been directly involved in providing or administering a lethal dose of medication to help someone have a hastened death. 

Most wanted a range of measures to ensure their safe participation in legal AD.

There are enough medical professionals prepared to become involved should the law be changed and AD be permitted on a voluntary basis.

It was interesting that TVNZ gave air time to the Care Alliance to attack the research but refused to permit the researchers to correct the misrepresentation. Nevertheless Dr Malpas observed that the law will be changed, sooner or later. 

PSA Update

There's still no invitation from the Enquiry into Dying in NZ so I probably am not going to have the opportunity to speak to my submission.  I'm happy enough to live with that as I am sure I couldn't say anything that hasn't been said already. That Committee is destined to be bored out of its mind if it hears a lot of submissions out of the 21,000 received. And the big question will be, will they or the Government to whom they will eventually report, be able to bite the bullet and acknowledge the vast amount of public opinion in favour of moving towards some kind of assisted death in particular circumstances.

Meanwhile, my PSA is still remaining stable between 24 and 29 over more than seven months this year. That's a huge change since the dramatic increases of 2015.  Long may it last.

If "the people have spoken" what have they said?

The Parliamentary Health Committee, along with all its other business, is commencing to hear some of the 1800 who have asked to air their views on voluntary euthanasia. Members of the Committee will tour the country to make it possible for selected submitters to have their say.

It’s interesting that nearly 80% of the 21450 submitters are against voluntary euthanasia. However, public polls have risen consistently to almost the same figure in favour of it. 

The cynic in me suspects that a large proportion of the submitters simply sent in their names and addresses and a single statement such as “I am opposed to voluntary euthanasia”. This, as I have stated previously, is clearly what the somewhat biassed Chairperson urged his Catholic community to do last year.  See “Turkey” Collins, 30th March 2016 and my less filppant Ask Someone Else, Simon, 31 Jan 2016.

As far as I know, the Clerk of the Committee has not yet released an analysis of the submissions received; indeed, the impression given is that they still haven’t finished counting them! It’s usual for submissions to be classified as to weight and relevance and I, for one, would like to see that information.

I haven’t heard if my request to speak will be accepted. It’s hard to see how I could add anything to a debate in which so much about the facts and fallacies on both sides has been widely shared. But if I’m asked, I’ll be there... 

For me, and a few dozen others each year, this is a very personal issue.

Lost Luggage?

I notice  my last post was on the whimsical side. I could easily write in a similar vein today but the subject is a lot more serious.

Parliament has started discussing a Private Member's Bill giving airports permission to manage their own lost luggage problems. This popped out of the Parliamentary ballot box recently. But David Seymour's Voluntary Euthanasia bill languishes there, perhaps for ever. Well, that's how the system works.

But it seems in bad taste for a grinning Prime Minister to be reported saying that his caucus supports the lost luggage bill. But I guess any old bill would do to fill up some debating time and to keep V E off the agenda.

Yes, it could be whimsical. But for many of us it's darn serious.

Colecalciferol Confusion

A visit to Med Onc always ends up with prescriptions for all kinds of stuff, of course, and this week was no different.

However, what was different this time was a little difficulty arising from a small mistake several months ago.  I’d ordered up the full set of half a dozen items quarterly from my local doctor. He mistook my vague requirement for three Colecalciferol capsules a quarter and ordered up only two—which would be the correct dose for an Eclasta infusion which he assumed I would be having.

When I picked up the prescription and found I was one short, I contacted the pharmacy. They were sorry, but no, they could only provide exactly what was on the prescription. Certainly they couldn’t slip me another capsule.

I smoothed over the problem by ordering subsequent quarterly prescriptions somewhat earlier than I needed them so I would get access to this one capsule in time to take it on the proper day of the coming quarter. The system doesn’t seem to notice that I am getting several hundred dollars’ worth of medications somewhat ahead of when they are going to be used—at the end of this month I will have in my possession two Zoladex implants at around $500 each...

This week, to tidy all this up, my consultant prescribed four Colecalciferol, to enable me to catch up. But this morning I find only three capsules are in the container. Lengthy phone discussions with two people at the pharmacy have made it clear that this time they would be breaking the law if they filled the prescription exactly as the consultant wrote it. They can only issue three because the instructions were to take one each month. And they can only issue three months at a time.

So I asked if I could buy one capsule to make up the deficiency. No, they can’t sell prescription drugs—that’s against the law as well—but they could sell me a pack of 60 regular Vitamin D that were not as strong—for around $15. A sledgehammer to crack a nut, I thought.

“Just get your doctor to write another prescription for three”, they said.  Well my friendly GP would want $15 to write that and $5 to fax it to the chemist who would also charge the standard prescription part-charge of $5 when I pick it up. Not much of a deal, I thought.

How much are the darn capsules, I asked. They thought they were being refunded $15 for three. Actually, having extracted 120 pages of personal information from some eight systems linked to my National Health Index number—through some technical Right to Personal Information or something—I find that Colecalciferol capsules are being costed out on my records at a mere $1.01 each.

But I can’t give anyone a dollar to get one just to straighten this mess out. So I will carry on ordering the whole suite of stuff ahead of time just for the sake of having one capsule on the 6th of each month. And some time I’ll ask my Consultant for a separate prescription for just one Colecalciferol to bring everything up to date. That much cost will be on the generous public health budget but I will still have to pay the pharmacy part-charge of $5 when I fill the prescription. And I wouldn’t be surprised if the pharmacy didn’t make it up to two or three capsules because they couldn’t figure out what I would do with just one.

Somewhere in all this I think there must be the makings of a pretty good comedy script. But I wouldn’t write it because however much I am amused by its eccentricities I am grateful for the large amount of public funding that is keeping me going from day to day. 

Another trip to Med Onc

Another quarterly appointment...  Another trip across the city, and the 7am traffic report on the Northern Motorway was not encouraging. Another routine drag over the Bridge... Another Consultation with the dedicated specialists at Medical Oncology... But it was not quite routine. We had another change of consultant. And there was a little surprise to come.

I had to report a great increase in quality of life since the new meds early this year and that the side effects of these are quite manageable. My PSA had remained almost static for nearly four months. I commented that I’d had some weeks of a little more back pain than usual. My back has been a problem for half my life so we hadn’t paid a lot of attention to it. But Simon ran his fingers down my spine and when he got to L5 I jumped. No doubt about where the pain was coming from now. And a review of last month’s bone scan shows that the L5 and S1 vertebrae, the fundamental joint of the lower spine, are both now involved with the cancer.

So, another step on an interesting and challenging journey. It looks like I’ll be using some more consistent doses of Panadol from now on. No medication changes are being considered at this stage. It’s just a case of quarterly tests and watching and waiting while we get on with life. Plenty of that to do around here!

More on the Ca Pros Report and Barbershop Chorus

The radiologist who checked my bone scans a few days ago seems to have decided that there were no significant changes in my condition since last time. So I guess that's what we will hear when we meet the oncologist again in early August. By that time there will have been another set of the usual blood tests, too. Another challenge. Another milestone.

Meanwhile, in the absence of our musical director, I managed our Barbershop Chorus' invitational presentation at the Country Music Rally in Wellsford yesterday. Fairly demanding, trying to contribute the only tenor voice in the chorus as well as conducting. But we were very generously received. Especially with our first presentation of Country Roads, tackled especially for this group. We were certainly a big contrast to the noise of a seven piece band on stage - they drowned out most of the other vocal contributions.

I could never have done that before the medication we tried to end some ten years of regular hot flushes... How life can be improved with a small, cheap daily pill!

We're off now for ten days to check out the families in the south. We have started loading the car and there seems to be something for everyone in three households. A regular Grandfather Christmas trip in midwinter...