Friday, May 11, 2018

It could have been worse....

So Susan Austen has been fined $7500 for importing an illegal drug. At least she was let off other charges of assisting a friend to end her own life. Susan's been a compassion but forthright campaigner for the right to have some control over the manner of one's death in certain conditions. If they invite contributions to her fine Bev and I will be happy to send something along.
We need to support the proposed change in law so we can take back control of our own life and death at the end. At the very least the intended law would end the ridiculous 
and illegal charade that was associated with Susan's adventure...  So far, the Police and their wrongful use of a traffic control point have got off lightly!

Monday, April 23, 2018

Medical Medical

I viewed a documentary on the making of "Grey's Anatomy" a few years ago. The Director said that when they were writing the script there were many places where the script had a gap merely marked "Medical Medical". That's where they called in the advisors to script medically correct words for the procedures being shown on screen.

My life is just entering a phase of "Medical Medical". Today we reported to the ear specialist and had a fascinating time. The outcome seems to be that the almost total loss in my right ear was indeed due to the chill and infection from over-zealous airconditioning on our cruise in January. Nothing much can be done for it, Hearing aids will increase the overall level of good audio in my "good" ear but they will also amplify the unpleasant interference that still comes through the right. However, there's a device some some musicians use (Dr Bill plays the bagpipes!) that may ease this. We're going to look into that.

I also gave up about six vials of blood for three sets of tests - my bone density, my blood sugar (a bit worrying, that one) and the usual raft of items for my cancer. And about now I need to submit to the injector that inserts another dose of Zoladex into by abdomen. I have received an appointment with Nuclear Medicine for a bone scintigram and am expecting to have at least one MRI and a more or less ordinary CT scan in the coming weeks. "Medical Medical" indeed...

Somewhere in my Future Directives there is a statement that I do not wish in the last stages of my condition to participate in purely diagnostic procedures. It's interesting that a lott of this activity comes into that category. But perhaps some inconvenience on my part will contribute to some new knowledge about the development of advanced, metastatic, castrate-resistant prostate cancer.

Meanwhile, Bev and I have some living to do and I have a Village Newsletter to publish.

Saturday, April 21, 2018

Shades of "Turkey" O'Connor

I wasn't able to attend but I admired the motivation behind those who called a recent meeting to discuss the End-of-Life Choice issues. Their advertised intention was to have a balanced, dispassionate, calm discussion of the subject. What a great place to start, I thought.
However, a first-person report that came to me about the event was that the Hon Maggie Barry was leading speaker one side of the debate. She might have been a good selection as she is a member of the Justice Select Committee which has to study the David Seymour Bill for Parliament. But I am told that she used words like "killed" and "murder" in the context of the discussion. Evidently she made it abundantly clear that she, like "Turkey" O'Connor who chaired the previous Committee*, has not only made up her mind on the issue but is resolved to do battle with it in ways that, in a civilised society, should surely be called into question. My informant said the event was not a debate at all but was simply "The Maggie Barry Show".
On a Select Committee of Parliament we hope for people who have open minds and have the willingness to explore all sides of the issue without descending to manipulation of the terms and derogatory verbal abuse. I hope the Committee includes many who will reject these latter techniques for their arguments on this particular committee.
I hear that the Catholic constituency has again orchestrated a flood of submissions along the lines of their own distinctive theology and doctrine. Again, no doubt. they have been told not to mention the fact that they are Catholic; quite rightly, they fear that a maturing society may not wish to be dictated to by an ancient faith. Indeed, a lot of other churches - including my own - have failed to declare on the matter or just kicked for touch. But the principle of compassion may yet find a place in the hearts of those who make this decision for us.
Here's a funny thing; didn't Jesus talk a lot about compassion?

* Dedicated readers of my blog may recall that one of my respondents observed that asking O'Connor to chair a Committee on End of Life Choice was like asking a Turkey to convene a meeting on the future of Thanksgiving. 

Spot trouble

For upwards of a month recently I was feeling much more exhausted and sleepy than usual. And I bumped into doorways rather more than usual as well.
I'm used to a certain amount of lassitude due to the cancer medications I'm on. And I'm accepting I have a balance problem because of the loss of function in my right ear. But it's all been much worse in the last few weeks.
There's been no significant change in any prescriptions for three or four months. I am not taking anything new or different into my system. In fact, we've reduced two by 50% to help out with similar symptoms.
But, ah, I have been treating a number of spots and small lesions that have come sprouted during the long term of my medication. I've been prescribed Efudix which had to be spread on the affected areas twice a day for three weeks. Beverley, my book-publishing client has been using the same stuff and one day she observed that she had been more tired than usual and someone told her that Efudix might be the problem.
Really, I thought. The stuff is just smeared on my spots, not swallowed. But Bev was right. A quick visit to "Dr Google" has confirmed her suspicion. Apparently, there are several creams that, applied topically (as they say) can nevertheless cause substantial changes in one's awareness. And this one is as vigorous as any of them. Indeed some medicos refused to prescribe the stuff.
We've both finished our three week courses now and are pleased with the surface results. But I think both of us are even more pleased to have our customary energy and general alertness restored!

Monday, April 16, 2018

Around and about with EOLC

Twice recently I've been asked to share my illustrated talk on "From Prostate Cancer to Voluntary Euthanasia" and I've received a very good hearing. A local U3A group was more mixed in opinion and support than the rather progressive Sea of Faith Community of Auckland. The latter's position on issues of faith naturally made them somewhat more responsive to my concern for Choice. At both venues, it was quite a lot of fun to share this light-hearted presentation. 

Then yesterday I enjoyed a stimulating conversation with Prof. Phillipa Malpas of Auckland University; we had agreed on a number of questions that she put to me and I was free to ramble in my accustomed style. The audience was the occasional meeting of the Auckland End-of-Life group so anything I could contribute might have been seen as a bit surplus to the hard study they've already been doing. 

But many said afterwards that the personal implications of cancer came out in unexpected ways in my story. They appreciated some honest and forthcoming comments in areas that are usually tiptoed around. Most responded positively to honest and integrity. Many who spoke to me afterwards had personal concerns in the area I covered. It was at once an energising and humbling experience.

And the Leaf got us over to Roskill and back without a top-up charge along the way! We are loving it.

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

Image result for parliamentary bill nz

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?