Monday, August 31, 2015

The Debate Must Go On

The Parliamentary Select Committee on Health has released the terms of reference for its hearing of the issues around End of Life Choice. Submissions close in February 2016.
On the one hand, that gives everyone plenty of time to prepare statements. On the other, it moves the whole process further away in a distant future.
Furthermore, no Government has to take notice of a Select Committee. The matter will be investigated and a report produced. And that could be where it all ends. Both of the major political parties are aware that at least 30% of the country's voters do not yet support changing the law. There is too much to lose for the politicians on both sides to be enthusiastic about a debate that comes down to an actual vote on whether or not Physician Assisted Death will become a reality.
An promising feature is that the terms of reference state the Committee is to "fully understand public attitudes". A significant shift in reported public attitudes could well be prompted by publicity attached to the Select Committee submissions process. So a vigorous debate needs to continue now. Supporters of End of Life Choice must not leave the debate to the Committee. And they need to enlighten this debate by personal experiences. Some of us who have terminal cancer have to allow our stories to become public property. 
Tomorrow, Bev and I sit down again with our Oncologist and discuss the option of a fairly new chemotherapy, Abiraterone, and its vague promise of an "average of 4.6 extra months" of life.

It doesn't sound like much of an option. But, perhaps, if I am currently good for two or three years and Abiraterone could push that out a further, say, six or seven months, I could even be in the Parliamentary public gallery when the law is changed.

Sooner or later, with or without my presence, it will be.

Wednesday, August 26, 2015

PAD and Progressive Christianity

At a birthday nibbles and drinks last night I got into conversation with yet another person nearer my age (we don't talk about "old people" around here!). She asked me, "How are you?" and, as usual, I answered.
Most people don't actually want to know. "Too much information," they say to themselves. But if you ask me that question I am likely to answer it. And last night we got quickly around to end of life and medical care issues. She is another advocate for what she calls "euthanasia". The topic is quite close to home around here. Yet you couldn't find a more active bunch of oldies doing stuff. A black and white formal dinner dance planned by the management for this Friday night has been cancelled for lack of registrations - but I hear that a bunch of us are organising an unofficial "bring a plate" BYO "knees-up" in the Village lounge instead and we'll probably enjoy it just as much as the official dine and dance. That's the spirit of our age...

Someone said we're living in "God's Waiting Room" around here. Well, that's not quite how I would put it but I know exactly that feeling. Nobody knows better than us that we do not know what the next day will bring. When you have a terminal illness you're so much more conscious of the impermance of life. But, heck, meanwhile there's a lot of living to be done. There's a sense of urgency about how you fit in all the things you'd like to do in a day. For the first time for years, I've been working on formatting no less than three books at once. I thought I'd given up publishing. I've got caught up in our Parish's review of its badly neglected giving programme and we're experiencing a very encouraging response that is pushing us to do even better things. And today some of us from the Village are squeezing in a trip to the movies half an hour away and then rushing back to Barbershop chorus practice just before dinner. Oh, it's all Go around here...

And at the end....  What I hope for is something like this definition of PAD that I received in an email today:
There is a type of Physician Assisted Death where, at the request of the patient, the physician prescribes the drug, and the patient takes it to end their life. This is often called ‘physician assisted suicide’.  This type of PAD is beneficial to the patient, prevents suffering, is a compassionate act from the doctor, can be regarded as an extension of treatment at End-of-Life, is respectful of the patient’s autonomy, and allows the relatives and friends to say goodbye before the ravages of disease and intense sedation make this impossible. It also allows some ceremony and spiritual and religious involvement.

Members of Parliament, hear me: 
I have terminal prostate cancer. I am likely to refuse further medication next Tuesday. I believe it is a human right for me choose to die a dignified, planned death when I feel the time is right. Make it legal!

Wednesday, August 19, 2015

Family Budgeting

With all the interesting things to do around here, the book on family budgeting is moving along only slowly.  But it is a moving experience to enter into the lives of those who half a century ago had a vision of a country in which fewer households would suffer because of their inability to manage the financial affairs.

I am writing today of a public servant who conspired to change the way his department worked to help people into getting their own homes. I have discovered that an imaginative and sweeping proposal to assist Maori people into a better quality of life was back-burnered by one Minister of the Crown because it might become an election issue. 

But, wait, there was a change of government. The new Minister not only put the report back on the heat but appointed the report chair as acting secretary of the department. And a key person in the same department caught the vision and travelled widely around the country promoting a system of voluntary family budgeting advisors that altered the household budgeting landscape.

My own involvement in the decade from 1978 gave me huge experience in the area. I knew of the two men who dreamed up a scheme that caught the imagination of the country. But I was never enlightened about those who spread this extraordinary voluntary movement throughout fifty centres in just three or fours years. It is a privilege to be trying to put together their story...

Tuesday, August 4, 2015

Flag it!

The Change the Flag debate is fascinating. With many others, I am outraged at the $27m budget for the cost of discussing the flag. The flag may well be outdated and inappropriate but I suspect the allocation of that kind of money - not to mention the manipulative structure of the process - is just part of a ploy to exhaust us all with the possibilities so that nothing is eventually changed.

And I am whimsically touched that a throw-away remark from the Leader of the Opposition that we might just as well replace the NZ national anthem has launched a public discussion that has no budget but is already consuming more oxygen than the official flag debate.

I am absolutely with those who say that the anthem reflects a Victorian understanding of God and nation. But I am appalled that those critics seem to assume that all of today's Christians still promote that kind of thinking. Several times in this blog I have advocated junking the ridiculous anachronisms around the daily prayer in Parliament, saying grace on public occasions, a lot of Anzac Day liturgy, and, yes, absolutely, the national anthem.

Besides these real issues of our understanding of ourselves, and our capacity to express that understanding in appropriate and creative rituals, the flag debate is a bit of a sideshow.

More ups and downs of PSA doubling times

Image result for abiraterone acetate 250 mg

Today's appointment at Medical Oncology, at my suggestion, has been postponed. There being - unprecedentedly! - no significant change in my PSA for the last month, there wouldn't have been much to talk about. Up or down, another month may give us a better picture.

But I appreciate that doubling in the last three months is still a pretty steep increase. Not as steep as the two months of June/July, but still steep. So I am probably just delaying the inevitable. The white-coated ones really would like me to accept the government's offer of their fancy new drug. All my friends say "Of course you should do it." Even my very sympathetic GP, when discussing the prospect of 4.6 extra months of life in exchange for lowered quality of life from the drugs, wondered out loud:  "Well, you never know; a cure might be found in that 4.6 months!".  Now that's clutching at straws....

Right now my quality of life is very good and I am reluctant to submit it to the massive list of possible side effects of a very heavy drug regime in the hope of squeezing out a few more months at the end.

Monday, August 3, 2015

Ups and Downs of PSADT

My PSA doubling time rocked up to two months for the last three monthly readings but, last Friday, it went down to zero for the month. Quarterly trends are no doubt more reliable than one- month checks. But this is a big downwards shift for which we are all pretty grateful around here.

And, while I'm on-line, the Vol Euthansia Society has just sent me this link to a marvellous parody of the Eminem and Rhianna number Love the Way you Lie by Zdoggmd. It's called Ain't the Way to Die, and - if you can just follow the words - picks up on so many of the issues around end of life choice. A wonderful piece of work from an inspired medical team.

Oh, heck, here are the words for you. But do go and see the clip!

Based on “Love The Way You Lie” by Eminem and Rihanna

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s not right because this ain’t the way to die, ain’t the way to die

I can’t tell you what I really want
You can only guess what it feels like
And right now it’s a steel knife in my windpipe
I can’t breathe but ya still fight ‘cause ya can fight
Long as the wrong’s done right—protocol’s tight

High off of drugs, try to sedate
I’m like a pincushion, I hate it, the more I suffer
I suffocate
And right before I’m about to die, you resuscitate me
You think you’ve saved me, and I hate it, wait…

Let me go, I’m leaving you—no I ain’t
Tube is out, you put it right back, here we go again
It’s so insane, ’cause though you think it’s good, I’m so in pain
I’m more machine than man now, I’m Anakin

But no advanced directive, I feel so ashamed
And, crap, who’s that nurse? I don’t even know her name
You lay hands on me, to prolong my life again
I guess you must think that this is livin’…

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die

You ever love somebody so much, you can barely see when you with ‘em
That they, lay sick and dying but you just don’t wanna let ‘em
Be at peace cause you miss ‘em already and they ain’t gone
Beep beep, the ventilator alarms

I swore I’d never harm ‘em, never do nothing to hurt ‘em
Hippocratic oath primum non nocere now I’m forced just to torture ‘em
They push full code, no one knows what his wishes were
His sister heard him say once, “I don’t wanna be a vegetable”
But no one agrees in the family, his caregiver Kate
Wants him comfort care but Aunt Claire lives so far away
That her guilt eats her like cancer
So she answers, “Wait! I think he’ll wake”
Maam, you ain’t even in the state!

Palliate, relieve pain, get him home, explain
Critical care? Just hypocritical when it’s so insane
But they insist I shock his heart again so I persist
Guess that’s why they say that love is pain.

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die
The way that I should die