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?

End-of-Life Choice and end of Voluntary Euthanasia Society

A quick AGM yesterday disposed of the name with which most of us have been a little uncomfortable for some time. The word "euthanasia" seems to be a turn-off for a lot of people. So, what used to be the Voluntary Euthanasia Society of New Zealand is now to be known as End-of-Life Choice. With hyphens.
The Committee is the same, the objective is the same, but we have chosen to eliminate an unsatisfactory expression.
Ironically the guest speaker in the afternoon public session. Dr Jan Bernheim, used the word "euthanasia" liberally and without qualification. But his fascinating talk made it clear that Belgium has moved far beyond our sensitivities around the use of the word. And they have certainly moved far beyond our tentative reaching out for some new practice that will express the growing concern for suffering people to have some choice about the ending of their life.
Before 2002 Belgium did not have the highly developed hospice movement that has made such a different to the quality of death for some decades in this country. But when they did address the issue of dealing with the last stages of life they had the opportunity to include a style of what they cheerfully call "euthanasia" along with a wide range of palliative care.
This linking of palliative care with doctor-assisted-death delights me. I've been feeling for some time that the body that is already dedicated to dignity in dying is the body that should embrace the opportunity to carry its objectives out to the full. Hospice, far from railing against physician-assisted-death, should be the organisation that develops a compassionate philosophy of patient choice about life's ending and introduces practical opportunities for that choice to be exercised.
When former Prime Minister John Key said "NZ doesn't need voluntary euthanasia because we have Hospice" he demonstrated a total misunderstanding of both and uttered a forgivable lie. When Hospice says NZ doesn't need any kind of doctor-assisted death, they also are fumbling with the truth. Worse, they are denying their organisation the opportunity to take a great step forward in their own mission of improving the ending of our lives.

Singing at the local Hospice

My GP phoned this morning to tell me about my PSA. I was a bit ahead of him, having asked one of the nurse practitioners to look up my file and let me know. She was supposed to tell him that I knew but he rang anyway and we had a good chat about the situation. He'd like to feel that something was being done about it but we agreed that the routine three-monthly oncology interview in December would be soon enough.. I will have had another bone scan by then and we'll also have a more detailed record of the ups and ups of my PSA over recent months.
But his call has prompted a little more thought than usual and this morning I turned back to the draft of my submission to the Parliamentary Select Committee on Health. I'll support any change in the legislation that recognises that the right to life includes the right to be able to end life if it has become totally unbearable and meets some specific criteria.
This rush of fingers to the keyboard, and the wrong time on my computer clock, made us a little late for our Barbershop Chorus's departure to the local Hospice to sing to them. There were more of us in the chorus than there were of them but it was a good time and we did pretty well for a bunch of oldies with a rather wide range of ability and concentration.
With my rapidly rising PSA in mind, it was a little ominous for me to walk through the Hospice and meet staff and patients, carers and volunteers. Whatever the outcome of the debate about Physician Assisted Death, nobody can detract from the fantastic work that they do and will continue to do. If that is where I am going to finish my days in the not so distant future, I couldn't imagine a better place.
But I am aware that a recent fund-raising appeal for Hospice was based around the lack of government funding for some vital pain-relieving drugs. The argument that nobody needs to suffer while dying seems to be not yet true. If our government continues to refuse to debate the End of Life issue, it must revise its budgets around total pain management.

Make up your minds, parliamentarians!

Just back from the Auckland lecture by Dr Rob Jonquiere on the legalised regime for voluntary euthanasia in the Netherlands. What a breath of fresh air!
Quietly spoken but passionate, clear but deeply knowledgeable, he led us through the different cultural and legal contexts and explained the essential elements in the Dutch law and practice.
Euthanasia is still a crime on the statute books. But there is a specific exemption around a set of key criteria:  patient request in relation to "unbearable pain", and physician cooperation in the light of a "hopeless" condition. The process is enshrined in careful consultations and enjoys a thorough review mechanism.
In particular, Dr Rob drew attention to their emphasis on "ending suffering" rather than "ending life because of terminal illness" as was recently proposed for New Zealand.
So far, no Parliamentarian has agreed to hold up the flag for even this very basic proposal. The government of the day is clearly too conservative. The opposition prefers to concentrate on "the economy" rather than the plight of those suffering in terminal illness.
The stance on both sides of the House is profoundly ironic: my local hospice is canvassing for donations to pay up to $1000 a treatment for patients with unbearable pain. They have to beg in this way because this drug is not funded by Pharmac.
Make up your minds, parliamentarians:  either authorise additional funding to ease the suffering of those who are trapped in pain because of your misplaced sense of priorities or get a re-drafted End of Life Choice Bill into discussion with some urgency.