Monday, March 5, 2018

The Ca Pros Report

A good time today with the chief of our department. My PSA is back up at 60, but that's not higher than it was when I began on Abiraterone/Zytiga eight months ago. It is a little disappointing that this stuff hasn't had more impact. But for the present we will continue on with it, aware that there are no significant things to try when this ultimate medication ceases to be effective.

We are reducing the accompanying steroid medication to 50% to try to minimise  the skin damage that has been occurring. And if my GP doesn't refer the significant loss of hearing in my right ear (since a bad chill on the cruise last month) to ENT dept, our consultant will organise an MRI anyway. He speculates that bone damage from the cancer could possibly be restricting the nerves from the ear where they pass through a small bone tunnel - that's one possibility we didn't think of!

And, routinely, I have to do another bone scan to see if the cancer is making much progress in my spine. And probably a CT scan as well.  I gently object that none of these will actually do anything to halt the cancer, but, heck, he is so keen to keep me as a living, breathing, example of the wonders of modern medicine. And there possibly be some targeted radiation to come. So, Ok, we will cooperate as well as we can while the quality of life is as good as it is these days. We are so fortunate.

As ever, we had a fun time with this engaging consultant.

Thursday, February 15, 2018

Submission Time

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I am spending a lot of time drafting my submission to the Parliamentary Select Committee on Justice.

This Committee is dealing with the David Seymour Bill on End of Choice. It was well received by Parliament and sent to the Justice Select Committee to hear submissions, do necessary research, consider the issues and bring a report back to Parliament in due course.

My strategy is to first support the Bill in its basic purpose, to provide some opportunity for a very carefully assessed group of people to ask for assisted dying. The nonsense issues raised by some objectors are carefully addressed and it includes very precise conditions in which medical aid in dying can be achieved where it is found to be appropriate. That would be enough.

But there are three issues in which I am asking for some change or addition to the Bill.

One is about the informal suggestion that the whole debate be deferred until a general referendum is held on the matter. This seems totally unnecessary considering the huge support the general principle has received in so many professionally conducted polls over the last couple of decades. There is no evidence that the mood of society is turning away from its wholehearted support for the need of some kind of assisted death.  Asking for a referendum is only a delaying tactic from the opposing minority.  And from a purely personal point of view, the delay involved would be likely to mean that any change in the law would come too late to benefit me in a death that has some promise for considerable pain and loss of dignity.

I would like the Bill to be amended so that I could apply and be assessed for medical aid in dying before actually setting a date for my death. I think there should be a period in which I could have the permission approved - and the prescription in my hand -without the condition that I am going to use it in the next few days or return it to store. I would like to continue living as long as possible, even in considerable pain, but I would like to have the assurance that, should I need it, the medication is right to hand. The Bill does not provide such certainty. Other jurisdictions have done this well.

Thirdly, I am extremely disappointed that the Bill does not provide for any form of End of Life Directive. The application for doctor assisted death can only by made by a patient who is fully conscious and understands clearly what he or she is requesting. I believe that if a patient, in full knowledge of the issues and with a good grasp of reality, prepares and signs an End of Life Directive and has this formally registered then if the person falls into unconsciousness, the provisions of that Directive could be applied. Medical assistance in dying could then be provided. As it stands, this Bill is woefully inadequate in the omission of such provisions as were included in the Maryan Street Bill which received so much support a couple of years ago. I will press the Committee to try to improve this aspect.

But, at the end of day, the Bill is at least a firm step forward. Its prompt passage into law will be welcomed by the small number of us who might find ourselves seeking help to end an intolerable existence in the next two or three years. Let's get it into law...

Here's the link for making a submission. They're due at midnight on Tuesday 20 Feb.

Friday, February 9, 2018

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After three or four weeks on a "Come back New" cruise which left me with a very bad chill I am still only on half-steam and trying to get a start on my submission to the Justice Committee on the David Seymour End of Life Choice Bill.

One of the things that I really admire in some of the jurisdictions which have put in place some form of physician assisted dying is that they permit the prescription to be written in advance of when it may be used. The patient then has the certainty of knowing that they have the opportunity of initiating a peaceful death. But the evidence is that up to half of them do not fill the prescription.

The sense of comfort and certainty in this process really appeals to me. I can understand how one might sleep better and handle the pain better knowing that an ultimate solution is already in place if it is wanted. 

I am wondering if we can get something along these lines written into the proposed bill.  It seems a few fairly simple alterations would make this possible. I'm no drafter of law, but does this principle make sense to others?

Thursday, February 1, 2018

The Ca Pros Report for Jan 2018

Not a very pretty result this week. My PSA is up from 41 to 60, the highest it's been for a year or more.

However, I have to confess that somehow in the packing process for our cruise, I didn't take along my Zytiga and in spite of great cooperation from our neighbour Brian and NZ Post, I didn't have them until we'd been to Sydney and back to Dunedin. Given its previous rate of doubling, the figure of 60 seems to be entirely what one would expect for eight or so days of no medication, so no surprises. Now we're plodding on with the pills and hoping for the best. But I really should be spanked.

Just before we went away I did a fascinating interview for a Univ of Otago study on the end of life opinions of people who are terminal. The draft of our conversation has just come back and the transcriber seems to have added ("laughter") to almost every comment on some 25 pages of script. It was certainly a lot of fun. As well as opening up some areas of thinking that I needed to turn over... It is good to be able to deal with these issues in a whimsical frame of mind. May it ever be so.

And I've just had a chat with Kirsten from somewhere down south who phones me up every month or so at the expense of the supplier of Zytiga. She gives them feedback on how I seem to be coping with the stuff - it's always an interesting chat and I am impressed that the company can go to the expense of keeping in touch with people who are using its product. So far, all my experience has been very positive but I guess they won't be pleased to hear that I missed more than a week on it...

Now, the big effort is to prepare a submission for the Justice Committee on the End of Life Choice Bill which is now at the discussion stages. I brought back a major cold so life here is only slowly resuming its normal course.  In fact I think I'll now go and have a Nanna Nap for a bit...

But, first, if you're so minded, here's the info on making a submission:
Submissions on the End of Life Choice Bill can be sent to the Justice select committee, by email, letter, or online. Submissions close on February 20, 2018.

Friday, January 12, 2018

A great word from Jack Havill

In today's Herald, an excellent article from former End-of Life Choice President Jack Havill refutes opposition arguments in economical and very readable prose.

He has more patience than I have with people who choose to make absolutely ridiculous claims about issues which they have evidently never critically examined and then proceed to shoot down their own scarecrows.

Just two days ago a friend said to me, "But what about this awful provision for an 18 yr old to ask for assisted death?" He didn't know about all the required conditions... Just saying I don't want to live isn't in them.  I emailed him the relevant text of the Bill today.

This debate will need patience and a dedicated passion for truth and justice. We have to get past the technique of distorting what the other side says and then cleverly shooting down our own distortion. Havill's article provides significant illustrations of this style of argument. It has a sense of grace which I covert for the submission which I have to make in the next couple of weeks.

Thursday, January 4, 2018

Now the A.C.T.

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The legislative assembly of the Australian Capital Territory has just opened an inquiry into End of Life Choices in the A.C.T.

With the example of Victoria before them, they seem to have moved smartly to follow suit, with a comprehensive terms of reference and a full year before they have to report.

Included in their terms of reference is the provision where Federal Government some years ago withdrew the right of States and Territories to write their own law on this matter. This was prompted by a Northern Territory decision to legalise voluntary euthanasia for its people. This Federal law will have to be overturned before progress can be made in any State or Territory - another big challenge for the movement.

However, in Australia, as in New Zealand, it is becoming clear that new law is no longer a matter of if, but when. The mood of our communities and the opinions of broad samples of our societies seem to be making that clear.

It is right that every jurisdiction should investigate its own needs thoroughly. If NZ is dragging its heels in what some see to be a liberal rush to respond to perceived community needs, let it be because the matter will be thoroughly and impartially investigated, not because some powerful minority groups are exercising undue influence in slowing down the decision-making.

Wednesday, January 3, 2018

A Challenge to Hospice

 Three or so years ago our local hospice ran an appeal based on the claim that some of their patients were dying in pain because there was not enough money to buy effective medication. The appeal letter could not be found when I asked for a copy a few months later. And, of course, it was not entirely factual. A year or so later the then Prime Minister asserted that “We don’t need Voluntary Euthanasia; we have hospice”. 

That, too, was a bit naive. We know now—as I personally found out after surgery a few years ago— that not all pain can be controlled. Indeed the World Health Organisation suggests that up to 25% of pain may be untreatable. So the palliative care movement cannot be expected to deal with all pain. And the dilemma for the hospice movement is what can they do with patients who unhappily fall into that category?

My answer would be that hospice should think about embracing the medical aid in dying movement for such patients as wish to avail themselves of it. I know all the traditional Hospice arguments against such a course. It would involve a sea change of thinking. But studying the values and aims of the hospice movement I can now point to a lot of hospice principles that could be honoured by taking palliative care to its logical conclusion in every case, instead of only in five out of six patients.

Respect, dignity and compassion are values that apply as well to a good programme of medical aid in dying as they do to palliative care. And, perhaps, at the end, for some people for whom pain is uncontrolled and who choose for another option, they apply more to the former than the latter.

Where could we find a more appropriate organisation to offer the qualities of nursing and pastoral care, support and judgment that will be required when Parliament has passed an appropriate law?

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


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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...