Thursday, February 11, 2016

My Mid-December Submission

Now that the Health Select Committee has presumably seen my submission I think it is OK for me to put it here for those who have asked to see it. It was submitted in mid-December, and by the time I get to speak to it, I may have modified some of my views and clarified some of the bald statements that I presented as "facts". But, for the most part, it is still consistent with my overall position.

David Stewart Mullan of Red Beach, retired Methodist presbyter
I support legislation to permit choice of some form of assisted dying in New Zealand.
In relation to the Committee’s Terms of Reference:—
My submission is an attempt to offer a “concerned New Zealander” view about the “ending of one’s life and the current legal situation”.
It comments on the “effectiveness of services and support available” to me as I face terminal cancer and a possible desire to end what remains of my life.
It also touches upon “factors that contribute to desire to end one’s life”.
I wish to speak to the Committee.
My contact details are
28/101 Red Beach Rd, Hibiscus Coast 0932
09 426 7562
021 169 6558

2   Synopsis
My Background
I introduce my personal diagnosis with prostate cancer and describe my present situation.
I am deeply concerned at the lack of dignity that accompanies some deaths.
If palliative care is a realistic alternative to voluntary euthanasia—as some have suggested—it should be more adequately funded.
Abiraterone, offered to me, would have cost the State $4000 a month, for relatively little gain. Oxycodone, a palliative, is not on the free list.
The personal cost and trauma of unnecessarily prolonged life is carried for a long time by some bereaved people.
I reject a religious philosophy that suggests that unbearable suffering is acceptable and respectful of the sanctity of life.
Those who stand to benefit from end of life choice are not a large group, nor are they easily identified but they have a genuine need.
Other controversial issues involving relatively small sections of the population have been legislated for.
Of course a new law may be abused or even deliberately altered later. But the present proposal should be viewed on its merits alone.
Medical practice around end of life issues has changed greatly. It is time for our country to move towards increased respect for the dying.
I wish to have some control over my health and welfare including decisions around my end of life.
Medicine, some Christians, and Parliament cannot “have it both ways” but dying patients deserve some choice in the manner of their death.
Associated persons

3  My Background
Aged 80, I have been living with prostate cancer for thirteen years. In 2002 a routine PSA check-up led to a diagnosis of prostate cancer in four out of six biopsy samples. It was Gleason Grade 7, on the border between average and high. Using Walsh’s formula I gave myself a survival prospect of 80% chance of three years and 30% chance of eight years without medical intervention.
Living in the Far North, we considered the options and decided on surgery in Whangarei hospital. A year after surgery my PSA became measurable again and rose consistently for three or so years until I went onto Zoladex implants which knocked it down again. Within another few years it was increasing once more and Bicalutamide was added, giving another cycle of low PSA and then another steady rise. After nine years of these cycles ago my urologist declared that he could do no more for me. This prompted us to move to Hibiscus Coast last year, to be closer to some of our family.
Cancer Located
North Shore Hospital happened to be one of three NZ centres that offered the ARN 509 trial so I applied for this. I failed to qualify for the trial because the extensive assessment process revealed that the cancer had migrated to my spine. I had some targeted radiation in 2014 and this set back my PSA another twelve months. But it is now rising more rapidly than before, doubling in much less than six months. In December 2015 I have been through another round of diagnostics and consultations and am now commencing Cyproterone.
Quality of Life
For sixty-eight years I lived a very full life with virtually no medical problems. Even in the years since my diagnosis and the wild fluctuations in PSA and concomitant medical discomforts, I have continued a very satisfying and meaningful existence. I was able to make a significant contribution to the Bay of Islands community through the Uniting Church, Residents’ and Ratepayers’ Association, Community Patrol and convenership of the widely representative but controversial Paihia Planning Committee. For two years I served as National Chairperson of the Uniting Congregations of Aotearoa-New Zealand.
Privately, in the same period since my diagnosis, I have written and self-published several books, written and acted in dramatic productions, made prosumer video documentaries and created and staged three complex murder mysteries. I have travelled widely and enjoyed several years of retirement of the highest possible quality of life. I am profoundly indebted to the public health system for providing the ongoing medication which has made this greatly extended journey of meaningful life possible.
It seems likely that my life expectancy is now shorter rather than longer. So I have more than average interest in the matter that is before your Committee. Through my cancer journey of these fourteen years I have greatly appreciated the way in which my views have been considered in my medical and surgical care. In every institution I have seen notices and leaflets proclaiming the central role of the patient in one’s own welfare. This submission points out that all such assurances about involving the patient in his or her welfare stop short of allowing one to choose the moment when life may end.
This must change.
Note: I have used the terms Voluntary Euthanasia, Physician Assisted Dying, etc interchangeably, always referring to a death that is initiated by patient choice. Choice is at the heart of my submission.

4   Issues
As a retired presbyter or minister, I have probably given more thought to end of life issues than many people. In parish work I ministered to countless individuals who were unable to extricate themselves from the burden of medical over-enthusiasm and/or their own inability to take charge of their own demise. I agonised over people whose religious beliefs dictated that long-drawn-out physical suffering, mental and emotional stress were, by their interpretation, the “will of God” for them. I have seen attempts at compassion that delivered only further stress for all concerned. I have seen dying Christians, who believed with all their hearts that they would go to a better life after death, resisting death with all their might. And I have witnessed dyings that had neither integrity nor dignity and were a denial of what I understand to be the teachings of Jesus.
An elderly male relative of mine spent his final days in physical pain and mental suffering and various kinds of helplessness, indignity, discomfort and embarrassment. He was ready to go long before his death actually took place. He specifically expressed to his daughter his anger and disappointment at waking up after an episode where he expected—and was happy—to die but was “revived” by well-meaning medicos. He received good hospital care (much more than the 1.5 hours per day that Submitter Celia Barrell says were given to her husband). And that care was certainly not directed solely towards keeping him alive. But his was a bad death. It may have ticked the formal medical boxes but to me it seemed inhumane.
I submit that a progressive society such as ours should be moving firmly towards delivering and enhancing dignity in dying.
I have been greatly impressed by the Hospice movement and its remarkable efforts in palliative care and its determined quest for dignity and comfort in the last days of life. However, I understand that a university survey of 160 hospices in Australia revealed that one in five Hospice patients dies in unmanageable pain and suffering. This appears to be not because more effective drugs are not used. I am becoming aware that ultimate medication for extreme pain with opioids such as Oxycodone is too expensive to be provided for many patients. My local Hospice targeted its financial appeal for this year around specific reference to their inability to fund all the pain relief they wished to offer through this kind of medication.
I suspect that many of the general public blithely assume that Hospice and our public health services can continue to meet the huge cost of alleviating pain while maintaining the pulse, breathing and brainwaves of those from whom illness or sheer age has stripped most or even all of the elements of actual meaningful living. This is evidently not the case. It is inaccurate, misleading and irresponsible to suggest that Voluntary Euthanasia is not necessary because hospices are able to take away all pain and suffering. Medical science may have the answer. But the plain fact appears to be that our country’s Health budget does not pay for it.
I point out that it is ironic that the same Parliament which until now has sat on its hands about a debate on end of life choice has been equally unwilling to fund ultimate medication to deal with ultimate suffering.
As Superintendent of the Dunedin Methodist Mission which managed a Rest Home and Hospital of around 80 beds in the 1970s, and as a member and chairperson of the Department of Social Welfare’s Home Budgeting Advisory Committee of 1978-1988, I have been well aware of the public cost of medical care of people who, like myself, are moving into their 80s while falling victim to debilitating
illness and disease. There are large issues here. I accept that the cost of this care should not be considered as a central factor in the End of Life Choice debate.
Yet, from a purely personal perspective, I have a sense of concern about decisions to be made around my own diagnosis. Three months ago I was offered Abiraterone. This $4000 a month drug had just come onto the Pharmac free list (for only 700 men) and I was told I met the criteria. Trials indicate that this drug is likely to add four or so months to average life expectancy.
It is tempting to choose any delay in the onset of the pain and discomfort that usually mark the end of a journey with prostate cancer. I could perhaps hope to extend my life long enough to be around for another great-grandchild or two. (I could even live long enough for Parliament to have passed a law allowing me to choose not to have to endure the unendurable!). But if I can be dispassionate about the situation, I sense that the huge cost of a course of Abiraterone might be better expended in some other part of the Health budget or on some younger man.
The public health system has been extraordinarily good to me. I have had three other major surgeries during my thirteen year journey with cancer: a surgical emergency and two unicompartment knee replacements. The latter will not have a long life, but they have added immeasurably to my mobility and quality of life in the last few years and I am immensely grateful for them. Abiraterone, in my present situation, will not make that anything like that degree of difference to my life. On the other hand, I tell myself that if there’s no change in the law I guess some Oxycodone would be pretty good when the time comes—lots and lots of it!
If the Committee finds itself unable to support Voluntary Euthanasia, my own personal need in the future is likely to centre around more comprehensive funding for palliative care.
And, of course, care and medication are only a part of the “cost” of unnecessarily prolonged life. When I was in active parish ministry—well before the Hospice movement—I sat many times with people at the deathbed of a family member. I was appalled at the physical and emotional toll on all concerned. A few of the dying, like my mother, took control of their passage from life to death by refusing all medication, food and drink. To the consternation of their families, some of these few managed their own deaths—after a fashion. My mother achieved this in a matter of hours after her final resistance to medication and sustenance that were pressed upon her. But not before members of the family had an interview that amounted to a very unpleasant confrontation with the Medical Superintendent who claimed not have heard of the firm statements she made at the local hospital where she was first admitted. At least she was finally able to get her wish; but I saw several people survive for days or even weeks as dehydration and starvation and general debilitation gradually consumed their frail bodies.
As if the stress of this kind of death is not enough, patients also suffer from knowing the stress and strain the manner of their dying is imposing on their families. My mother’s two aunts and her own mother died lingering deaths, and these coloured her negative response to her own emergency hospitalisation. She was determined not to inflict on her loved ones the months and years of stress that she experienced in her own relatives’ deaths.
Certainly, in my experience as a pastor in the 1960s, I became acutely aware that absolute exhaustion around demanding and demeaning deaths sometimes caused huge psychological and emotional barriers to wholesome bereavement outcomes. There is a cost to society for inadequate handling of grief and anger when next of kin and friends are subjected to a long drawn out and stressful death. For the bereaved, these emotions may continue for some time even when competent counselling and professional support are sought.
I invite the Committee to acknowledge that the personal cost of unnecessarily prolonged life is carried for only a limited time by the dying but some bereaved may carry extra trauma for much longer.

Of course “choice” in this context is a controversial issue. It is not surprising that strong and conservative opinions are held by many religious leaders. I appreciate that some Christians argue that the sacredness of life itself is more important to them than the actual quality of life. Some even ascribe a kind of religious virtue to suffering, informing us that it builds character and makes us stronger. Of course it may—there are plenty of examples of suffering that has built character in both the sufferer and those who surround her. But in my view it is not a commendable religious practice to justify an unpleasant physical experience as some kind of character-building exercise. It is still less virtuous to describe suffering as an Act of God, or worse, a punishment for a life lived less than satisfactorily. I certainly reject the theology that claims that pain and suffering are “sent” by some all-powerful providence to “test” us. I affirm the view of the British Inter-Faith leaders for Dignity in Dying —
There is nothing sacred about suffering, nothing holy about agony, and individuals should not be obliged to endure it.
Rev Professor Douglas Pratt, of the University of Waikato, has reminded me that the “sacredness” of life—particularly for religious people—is about something more than mere biology. An irony he and I see is that as we draw towards life’s end, the biological element of being is often the last to decline. The fullness of life when we enjoyed all of life’s faculties is going or gone. To deny end-of-life choice to people as they pass from that fullness to an existence which may be little more than biological is to degrade the concept of sacredness itself. Dr Pratt echoes the UK quote above—
There is nothing inherently sacred in an existentially belittling mere biological existence. The allowance of choice to either prevent interventions aimed at prolonging such life, or to facilitate its inevitable end, needs to be granted.
The key word is choice. I don’t ask anyone else to live by my understanding of faith. Nobody has to live by my religion. Current proposals around voluntary euthanasia do not condemn anyone to doing anything that is contrary to their personal religious position. What I want to impress on you is that the present law denies me the right to act for myself according to my personal Christian faith and beliefs. For me, choice about ending my life in appropriate circumstances is an issue of human rights of which, under the present law, I am deprived.
I can quite understand the historical influences which have led our country to apparently deny its citizens the right to shorten an intolerable existence. But the theological view that once led to a rigid understanding of the nature of a human life has long since been rejected by most of our citizens. The selective use of the Christian scriptures to make a point in this day and age is not acceptable to me. Indeed, I am not comfortable with fixed views on any matters of ethics and morality. The changes that have taken place in Christian thinking about issues that used to be viewed as absolute, lead me to believe that the essence of Christianity is not in hard and fast rules—it is centred on relationships and the principle of compassion.
These qualities are not particularly distinctive to the Christian faith but are worthy components of any modern society. All the good governments of history—whether secular or religious—have tried to provide for all their people to live together in harmony. At the same time good societies take responsibility for their infirm, their aged, their impoverished and their sick. The implications of relationships and compassion in both living and dying impel me to make this submission.
I ask the Committee to recognise that the present law—far from shaping and supporting constructive behaviour among our citizens—degrades human relationships and impedes basic human compassion.
It should go without saying that law-makers should pay considerable attention to the beneficiaries of any proposed law. In making a controversial decision, this is even more important. When the “right hand” rule was changed a few years ago there was no groundswell of opinion among the electorate
that this was an urgently needed reform. But it was needed, among other reasons, for the benefit of the small number of victims of road accidents. Amendments to the Sale of Liquor Act have also been put through—against strong opposition—on the strength of the benefits to a loosely defined core of victims as well as the whole of society. Increasing the limits of blood alcohol for drivers have also made a demonstrable difference for victims of road accidents who, statistically might have been considered a relatively insignificant group.
The evidence suggests that Physician Assisted Death is clearly a proposal which will affect only a handful of people in any year. Where it has been made available in other jurisdictions there has been no wholesale rush of aspiring candidates. Indeed, a significant proportion of patients, given the choice, decline to use it. There is no reason to believe that there is a vast multitude of people waiting impatiently to be allowed to initiate the ending of their lives. In allying myself with the End of Life Choice movement I have found it impossible to identify a segment of the population who clearly stand to benefit. The circumstances in which end of life choice is desirable cannot be predicted. And when the time comes, people like me may claim that they want the right to choose while others may prefer not to seek such a law change. But in the situation of extreme untreatable pain or an unbearable existence, who can say how any individual will react?
I believe the Committee must recognise that a properly devised provision for End of Life Choice will not have widespread implications but has substantial personal benefits for a few.
Provision for choice in ethical and moral issues is not a drastically new step. Parliament has many times made decisions to give some citizens the right to do what other citizens would choose not to do. In my lifetime, equally controversial issues of abortion and homosexual relationships have been legislated for in carefully drafted provisions. These new laws seem to function in manageable ways, permitting personal choice that was not previously available. For the people concerned, these changes have given new life and dignity.
Provision for some form of voluntary assisted dying in properly regulated circumstances is directly comparable. To provide legislation for particular groups in society does not create a new principle for Parliament. It is simply part of the normal responsibility of an elected assembly in a democratic community.
I urge the Committee to invite Parliament to step up and exercise its full responsibility for the good of all citizens.
All laws that have any kind of moral element to them have some inherent risk of abuse. When changes are proposed there is always opportunity for objectors to claim that what is proposed will be an inevitable descent into some less acceptable moral or ethical position.
I submit that almost all previous adjustments to the moral rights of certain sectors of our society could have been resisted on the same grounds. When Parliament wrote careful law there have usually been improved outcomes for all concerned.
Not much law would be enacted if every conceivable extension of it became a reason for not proceeding. It would be irrational and unhelpful for you to allow speculation that all of the conditions as drafted in the proposed bills are in some way defective because at a later time some aspects of them may be further amended. It seems to me to be irresponsible and deceitful for submitters to base their objections on their own predicted variations, events or principles that are not part of the proposal.
I urge you to address the specific argument of the supporters of physician assisted dying, not some imagined extensions of the proposal.

Times change. Society’s attitudes and mores change. A relevant reality in this context is that withholding medication or treatment to allow death to take its course was, within my living memory, considered by many people to be every bit as offensive as Voluntary Euthanasia is to some people now. Today, however, this practice—passive euthanasia—is quite widely exercised on compassionate grounds, subject always to personal conscience. This has been a substantial shift in public opinion and medical practice.
Even more significant was the development of indirect euthanasia in which treatment is provided to alleviate pain in the knowledge that a predictable side effect of the treatment is that death will be hastened. The technique, and its implications, were known half a century ago, but not practised widely until more recent times. The use of opioids in the context of cancer deaths such as I anticipate for myself, has become widespread. They are given to reduce pain but in the knowledge that they will also hasten death.
The outcome in both passive and indirect euthanasia is that life will end. That is a reality. It is why some claim that bringing about death by providing or withholding certain treatments, is always wrong. It is always “killing”. I have every respect for this position. It seems consistent with thousands of years of both religious and secular codes about the sacredness of human life. But the reality is that it has never been widely respected as an absolute standard. Certainly, I reject it for myself. In the contemporary context of all kinds of interventions that have an effect for good or ill on individuals, I have not embraced this view for most of my life.
For over four decades I have retained the clearest memory of holding one of our very frail elderly Rest Home patients who collapsed on the cinema stairs after a special matinee which she and everyone else had thoroughly enjoyed. We sent for an ambulance and I held her in my arms as the life flickered out of her. But a few minutes later well-meaning ambulance staff grabbed her from me and vigorously employed the brutal physical actions of the day to try to thrash her aged and withered frame back into some kind of life. They were doing what was right and proper according to their lights. But I was glad that they failed.
As a maturing society we do not have to ride on the crest of every fresh wave of science or theology and certainly not popular opinion. But nor do we have to orient our existence today only around what was good enough for our grandparents. And certainly not on what was good enough for Moses—as some of my Christian friends would probably say. Nor, indeed, on the brilliant Hippocrates, whose fundamental approach to doing no harm may still be absolutely at the heart of most of what medicine seeks to achieve.
These are new days and they invite fresh thinking. We have to grapple with new ideas, new developments, new sensitivities. More difficult, we have to unlearn some of our old ways to accommodate some of the new. Some of the very principles by which we have ordered our life as a society may no longer meet the needs of the day. Every sector of our country needs to reflect on the issues and be open to discarding outdated beliefs in order to help us all to move ahead.
Those who interpret the Hippocratic oath to “do no harm” as somehow justifying prolonged agony and suffering and denying choice for their dying patients should, to be consistent, also reject the use of passive or indirect euthanasia decisions that are made daily in the context of modern medicine and technology. In the context of a life that is clearly ending, it may be only a very small step from bringing about the ending of life by the painful process of doing nothing or over-medicating to simply ending life by granting the wishes of a desperate patient who chooses to die a little sooner rather than later. Either way, in a sense, medicine can stand under judgment. Nothing can be done about that. Providing for patient choice or denying it cannot make that dilemma go away.
Broadcaster Andrew Denton has recently observed that under prevailing Australian Palliative Care guidelines— is ethically unacceptable for a patient to choose a death that is quick and painless, (but it) is ethically acceptable for them to choose a slow, painful death by dehydration and starvation.
In the face of this dilemma it seems unreasonable to expect the medical profession to initiate some provision for patient choice. Indeed in July the Chair of the NZMA was quoted as saying that doctors should not have any part in decisions about dying. Given that a change in law is likely to involve them even more than at present the medical profession cannot be expected to bite the bullet and take the initiative. Only Parliament can deal with the challenge of this kind of creative change.
I suggest that the Committee remind itself that progress in human society is made most often when things are changed, not when things are prevented from changing.
I have prepared appropriate end-of-life documents and among them are clear instructions that I be given no heroic interventions as my death approaches. These provisions arise out of some clear personal convictions—
1. I recognise that these days considerable discretion is exercised in the health sector, whether by medicating to keep alive a patient who is dying naturally or withdrawing medication or a procedure to permit death to proceed.
2. However, I believe that our health system is still too heavily oriented towards the maintenance of mere “physiological or biological existence” at all costs; I reject the philosophy that appears to exhibit a stubborn resistance to the reality that death is a most natural part of life;
3. I wish to continue to have some control over my health and welfare as long as I am able to do so and this includes choice about some specifics of my end of life;
4. Indeed, I believe that after I am no longer able to express my wishes, there should be careful consideration of my previously expressed views when decisions have to be made as to my life, and especially decisions around prolonging of my death.
As to the last of these, I realise that it is not within the terms of reference of this Committee—perhaps this may yet be taken into your deliberations. But I wish to press on you the need for people in my position to be able to approach death knowing that the third of these convictions will be taken into consideration. For me, this means that if the time comes that unbearable, untreatable pain and suffering confront me and my loved ones while I am still able to make a decision, I want to have at hand the means to draw my life to a peaceful end with dignity should I choose to do so. I want the opportunity to choose to make the meaningful transition of being that is death with dignity, and, perhaps, some kind of celebration with family and friends.
Given such opportunity, I may well decide not to use it. But I beg you to allow me the means to choose to initiate my own release from the very worst discomforts of life after its pleasures have receded.
Please give me a law that enables me to make this choice.
In summary I offer you some alternatives which might be taken into consideration as you deliberate this difficult issue. I put it to you that—
Some Politicians must either stop talking about palliative care as a viable alternative to Patient Choice—
OR provide much more adequate funding for the very best in palliative care.
Some Christians must either review their understanding of the absolute sacredness of life in whatever circumstances—
OR publish their disbelief in the care and compassion of Jesus for the helpless and outcast;
Medicine, which acknowledges that both passive and indirect euthanasia actually result in the ending of life, should either desist from these practices—
OR find a way of enabling, on a conscience basis, the ending of life for patients who wish to choose a more comfortable route;
These groups cannot “have it both ways”.
Patients suffering untreatable and unbearable conditions should be allowed to have it both ways
They should have the freedom to ask for the means to end unendurable lives
And also the freedom to use it— or not use it.
For this issue is just about these few individuals and their own declared needs. We need you to make this possible.
I make this submission on my own behalf but the following persons have studied it and have asked to be associated with it.
Bainbridge, Warwick John, 7 Bella Vista Drive, 0930
Fannin, Jocelyn, 300/101 Red Beach Rd, 0932
George, Philip Roland. 301/36 Shetland St, 9010
Gibson, Rev Loyal J, 12 Madison Ave, 4414
Hayward, Peter Marten, 7 Bella Vista Drive 0930
Mullan, Beverley, 28/101 Red Beach Rd, 0932
Overend, Robert, 140 Stanmore Bay Rd, 0932
Pratt, Rev David S, 10 Valley Rd, Northcote
Pratt, Rev Prof Douglas, University of Waikato
Packard, Peter, 570/101 Red Beach Rd, 0932
(Signed) David S Mullan

1 comment:

  1. Excellent argument with careful attention to all the sensitive details - downside, probably too long for politicians to read and take on board as they have to plough through hundreds of submissions - but good on you, I fully agree.