A Good Way to Go

Chapter 1

Introduction

We all look for a good life and a good death. In the matter of euthanasia I started looking for a holistic and wholesome approach, trying to avoid prejudice and limiting my enquiry according to my more familiar disciplines. The most inclusive view in a socially diverse world is what I deemed to be the most reliable.

This book follows as a nosegay of flowers—various interesting blooms from a variety of sources. It is different from a scholastic work as a posy is different from that one dressed perfect bloom on the show bench which, though majestic, seems somehow artificial; maybe that is because it has been raised in a controlled glasshouse atmosphere with specifically induced conditions pushed to its limits, after which the bloom is cut and dressed—cleaned, trimmed, and rearranged—to meet the arbitrary rules of a particular horticultural society and its selected show judges.

Jennifer, my wife, is a great hand at posies. As a solo mum, she first made them to sell at the local market and florists. Of late she has given them away from her stand at the Ellerslie International Flower Show. What joy they brought as she explained the little details of the small blooms—which ones could be dried, which were perfumed, which were natives, and how to look after the bunch. Of particular interest were the cuttings that will grow when the posy is planted. I’d like to think of this book as a posy, not all great but collectively of interest, pleasure, and influence—all blended together to give satisfaction and from which something will grow.

I am also told I must give my credentials, even though I believe the truth should qualify itself, so here is a little of my background. I started my studies in the fine arts and worked as a teacher for several years before I qualified for and entered the Methodist ministry, received a diploma in Religious Education from Melbourne University, and supported the family through this by being a sales rep for The Mercantile Gazette. I did what I could to pioneer changes within the churches in New Zealand—the value of the arts in spirituality, structuring and uniting churches, developing councils of social services, and chaplaincy work, before taking up the position of Adviser in the Community Mental Health Services of Canterbury Area Health Board. During these times, I worked in the area of bereavement, victim support, disaster recovery, community development, and public questions, to name a few.

But my deepest interest in this subject came when my wife Glenda, herself a nurse and manager of Beckenham Courts (headhunted by accountant John Ryder and ex-policeman Kevin Hickman to get the ball rolling for their Ryman’s Healthcare), was diagnosed with cancer from which she later died.

In regard to caring for her during this time, I quote Dr Lutz Beckert, Respiratory Physician of Christchurch Hospital.

I genuinely and thoroughly enjoyed the insights Glenda had about her illness. It challenged many of my own views and will be with me for the years to come. Should you still have some of ‘Glenda’s Story’ . . . I would encourage you to attempt to publish. You may be interested to hear that the Palliative Care Physician and I had a long discussion about your most important supportive role during Glenda’s illness. We felt that you have been the most articulate and supportive support person we have met during our clinical practice¹.

Glenda liked to get things done. When she was told that there was nothing more that medicine could do to free her of the cancer, her response was, ‘Well, how do I die?’ (That is, ‘How does one engage positively in the dying process?’)

She had always been serious about hygiene, diet, exercise, and all that contributed to positive health. The question now was, ‘How does one apply the same principles to dying? How would she work constructively towards having an expeditious death?’

So here I am trying to open up a subject she wanted discussed.

It always was an earnest question, ‘How does one best go about dying?’ I know she believed voluntary euthanasia should have been a serious option, but conventions and her concern for us with the law prevented her from raising it. She was aware that medical and surgical intervention had changed the natural course of her life but then she was trapped in a life-prolonging system. The irony was that each time she was saved from the natural course of events, everyone then expected her to return to ‘normality’. Thus, as professionals plied drugs to kill the pain and stop the nausea, she expressed her appreciation, only to be told she was about to be handed back to the dying process, it was then about accepting that truth, and then participating positively in the process. How does one go about dying when one feels that its outcome should be natural and good, socially and culturally acceptable, as well as expeditious? If death is the prognosis, how does one claim their own dying?

Her question was certainly not about going to heaven or life after death. Being dead had never been an issue for her. One of her favourite quotes from the radio was, ‘Life is an interruption in oblivion.’ For her, this issue was about being proactive in getting to a ‘healthy’ death.

Glenda didn’t want to die but knew its inevitability as most of her nursing career was with cancer or geriatric patients. Her worst dread was to lose independence and dignity. Above all she didn’t want to pressure or compromise the family or be a ‘problem’ to anyone. She was not wanting to suicide, only wanting to be free to consider it. Her upbringing, however, denied her that. Neither did she want to jeopardise any of the family or friends by asking for help that might be against the law.

Giving birth and taking death

She recalled an earlier occasion when our first child was to be born, and said, ‘We were walking to the cottage maternity hospital in Opunake when I said, ‘I don’t know how to do this,’ and you told me that it would just happen. And so it did.’ So her answer was, ‘Dying would take care of itself, like birthing!’

Certainly dying is a life experience that has analogies with giving birth and those are what she hung on to. Like birth, death occurs in the midst of life. Maybe there is a conception-like occasion that initiates dying, but if so, it remains unknown or not easily identified. However, the experiences of both death and birth make the issue of control relevant, significant, and consequential.

Secondly, dying runs the course as a confinement until deliverance. The delivery, certainly in a birth, is best when it is allowed to take its own course. On the occasion of the birth of our first child, she avidly read a book written by the expert of the day, Dr Grantly Dick-Reid, but it couldn’t have been more wrong about the wonders, glory, and natural ease of the birthing process. He was blacklisted! Even so, the birth took care of itself. It happened in spite of our ignorance, anxiety, and the consultation with authorities and in spite of the occasional ineptitude of professionals present and quite contrary to the promises of the ‘natural processes’ idealised in the book. We know now that the outcome could have been different, maybe worse, but also a lot better.

The dying-birthing analogy has appeal because they are both moving from one state of existence into another. Does the foetus want to be born? Does it say, ‘How do you do this?’ There is no understanding of which party is in control of the situation, and it is a process accompanied by pain and trauma. They are both life experiences filled with inexperience and risk. The textbooks may be helpful, and so may experience, but likely not. It will happen naturally, individually, and uniquely. When necessary, at the times of giving birth and dying, there can be professional interventions to ease the pain and keep the individual safe.

This rite of passage was our answer in the beginning, but as Glenda’s health diminished and the misery increased, the suggestion came to be platitudinous. There are decidedly different primary factors involved. For those engaging in dying, the idea of being kept safe is something of an anathema. In birthing, for those who need help, the companions will ease any possible complication and then if necessary ultimately take over, as in the case of a Caesarean operation, but that only works at birth. Customs and law do not allow it for the dying. Thus the natural mother may gain some sort of confidence that it will all work out, but the dying, unless we get medical help, has been left to Mother Nature and her gremlins in the hope that she won’t be too cruel,

For the pain, they gave Morphine, and that had its side effects of constipation, stupor, etc., which had to be treated as well. For the nausea, they tried a variety of products but settled for Nozinan and that meant she was also sleepy. Thus the major problems were controlled, but the misery still remained. Then there were physical factors, some of which came from the medication she was on. There also were the psychological elements—maybe even Post Traumatic Stress Disorder for which little could be done. (This was an additional diagnosis arising after the eight major surgery and major life events in those three years. The psychiatrist did not think her depressed.)

Then there were the Groundhog Days when every day was the same, and with that the experience of a fatuous and senseless journey to death. So came impotence and fatigue and more—lassitude, feebleness, debilitation, exhaustion, and inertia—were spoken of. The inability for self-determination caused by this enforced lethargy brought with it the awareness of her own loss of dignity.

Birth and dying are events that only an individual can do, but without companionship, they are lonely roads to travel. Professionals, partners, family, and friends, all helped by providing spiritual, emotional, informed and practical support. Familiar faces brought care and compassion because we knew they identified with us.

Three Major Concerns

On reflection, there were three major concerns for which there was little help. Firstly, in seeking confidence in our risk taking we tried to find as much information as we could. Calculating one’s chances doesn’t apply only to visiting the TAB. Risk taking is a general life dilemma but especially so when the patient is brought into making the choice of options for treatment and signing consent forms; and I guess that’s equally so for a surgeon who has to make a choice or a physician who has to prescribe a medication.

Secondly, we sought companionship; continually available and readily identifiable familiar presence was not always available. It was all so difficult for some health professionals to establish rapport, especially when one was placed in an intense situation and there had been no previous contact. Because of the very nature of contractual health care, clinic queues and timetabling appointments, the need for rationing of resources, rotation of staff, and especially management by referral and delegation of duties, caring in the best sense—personal presence and commitment—was not available until we asked one consultant to be our primary physician within hospital services.

The third difficulty was timetabling the journey to death. On four particular occasions, we prepared to get off at the wrong stop. It would have been good if a conductor had been able to give us some goal, that is, arrival time, so that we could at least tick off the months, weeks, and days to the destination. I know there are clinical difficulties, and we didn’t conform to the conventions, but when the GP suggested six to twenty-four hours, it was a relief and a kindness.

The earlier use of the word ‘deliverance’ in association with dying and birthing is deliberate. Deliverance is also associated with the traditional religious words of salvation, redemption, etc., which describe the active work of God in bringing His people through and out of troubles. Thus, if one can accept the process involved in both birthing and dying, one can be protected from the power of the enemy, from the evil spirit and the oppressor, from the menace of the cruel, and from fears and troubles of a personal kind², and in the end one can become free³.

There is a technical significance also in the word ‘deliverance’ which implies a giving, just as a child is given to parents, or as when a message is delivered. Thus one may feel the good news of being set free from subsisting as miserable captives and go on to a purposeful ending. Accepting this way means release from the tyranny of death, even as, we pray, ‘Deliver us from evil…’⁴

She knew about the glory of old age as one of five living generations.

So what about those overt spiritual factors? Yes, we felt God abandoned us⁵. That may have been just our feelings, but there was no miraculous intervention, for which everyone was praying. I am witness to that; we felt forsaken even as it was for Job and Jesus and has been sung of by the many who have valued the Psalms and the Gospel songs and the ‘Blues’. God did nothing for them, or for us. Religious practices helped a bit. Books on the subject were ridiculous. But she clung on to faith by her fingernails.

And she got exhausted trying to make visitors comfortable.

In earlier times, she took comfort from period films. She always had preferred films of yesteryears, but in the last days, the old costume films gained more significance. She had thought that she was the only one that had to do it. But as she viewed the men in top-hats and ladies in crinolines, she was reminded that those characters are no longer and that she will not be the first to have died. These contributed to the ‘normalising of death’. Delighting in hearing names of people who were dead when there were no details about how they died, she said, ‘It might be easy to do after all!’

Somewhere, later on in the terminal journey, she said, ‘I’m tired a lot these days, and that is comforting. I now understand that I am dying, and this might be part of the ‘how’ one does it. I only want it to be soon!’

She was comforted by the knowledge that she mourned with one of her closest and dearest friends who became terminally ill at the same time, and though miles apart, they were taking their last journeys together. We also grew closer together in those terrible times.

Comfort in the presence of her deterioration was a key factor. The florist’s flowers irritated her. Comments about the beautiful view from her deathbed, the loveliness of spring, and the desire to keep the subject on pleasant matters caused her to close her eyes and pretend she was asleep. We waited in agony for such visitors to get on with their ‘seeing of her’ and leave. She particularly enjoyed visits from caring intelligent health professionals with whom she could openly discuss the real issues about her condition. And then it was the old friends who dropped in because they always had and brought contentment along with their local or family news and a single bloom plucked from their garden and their prayers.

Then her condition deteriorated, and we were reminded how, at the close of life, old loves gain new emphases; family reviews and photo-albums, dear friends and childhood memories were so valuable. This is the time when a life can be celebrated. Too often we leave it until the funeral and omit the most important person at the very time when it would give the most satisfaction.

In the end, I doubt that Glenda’s question about a self-determined dying has been answered. The issue seems to constantly slip into what other people are doing. It is still, however, an important question and deserves a serious, if not simple, answer. This book is my effort in that direction.

The end result is the same—they die and we mourn but the tragic and the traffic doesn’t stop. The birds keep on singing. We bring out the photographs and then put the past away in the bottom draw.

Chapter 2

Changing Mores

More Changes

I read that in Brittany once upon a time the old men were accustomed to seat themselves on grave-stones and ask each other riddles after the friend of the deceased and mourners had gone home. It was suggested that this custom was rooted in animism and the enigmatic language used to puzzle and confuse the spirit of the departed. Maybe so, but the story is a good introduction to discussions around euthanasia, the great puzzle.

In the previous millenniums, euthanasia for terminal illness had never been universally supported or condemned because it is personal but not private and it is not a public phenomenon nor a solely individual one. Our present laws for dealing with the aged, dying, and infirm arise as a natural course from societies’ protocols, including how some ancients practiced abandonment and some moderns have created lucrative professions and industries about the dying process. We need to also keep in mind how throughout history we have largely ignored the ultimately disabled and disadvantaged. The most one can say is that these poor and unfortunates have been side-lined for good people to practice charity (and occasionally medicine), and even kept for our entertainment as it was with Bedlam (The word bedlam, meaning uproar and confusion, is derived from the hospital’s prior name which people visited for weekend entertainment.), but more often put ‘out of sight’ for our comfort. The best effort in history was to try and provide asylums, but these have never been well maintained.

Everyone has an opinion—health services, legalists, religious, and others can provide heated arguments. In this atmosphere the status quo prevails and those who have the passion for merciful care act out their good intentions in spite of a myriad of opinions and laws, often with tragic results.

Here’s a fanciful story that struck a note with me. Two frogs fell into a bucket of cream. The first one who couldn’t find a footing accepted his fate and drowned. The second was so agitated about the predicament, it did whatever it could to find a way out. Eventually he churned things up so much that the cream turned into butter and from this solid matter he was able to jump out. The storyteller says the moral is that if you think you can find the second right answer, you are more likely to do so. The evidence is that more creative people pay attention to small ideas without worrying about where they come from or where they will lead; they are concerned only with the value of little gems. It is the persistent polishing and belief in worth that enables them to become keystone for great jewellery or (to change the metaphor) building blocks in a greater construction. ‘This will lead to taking risks and occasionally breaking rules… You’ll look for more than one right answer, hunt for ideas outside your area, tolerate ambiguity, look foolish every now and then, play a little bit, engage in ‘what if’ and other soft thinking approaches, and be motivated to go beyond the status quo.’⁶ That’s my approach.

Now the heart of the matter.

A search for cultural wisdom in the matter of euthanasia found this from 1883 apparently: ‘A New Zealand chief who questioned as to the fortunes of a fellow tribesman long ago well known to the inquirer, answered, He gave us so much good advice that we put him mercifully to death.’ Whether or not this was a bit of leg pulling, the story reflects both sides of the dilemma of the aged—as useless burdens and great storehouses of wisdom. In earlier times the aged were held in highest regard and seen as a collective way of preserving experience and therefore took a dominant role in the performance of ceremonies while the young provided the resources of food and security. But today modern culture is centred on consumerism rather than culture, and it is found that the wisdom of the aged is too restrictive and of little value. For example, many commercial polls have excluded those beyond the age of forty years.

Richard Owen’s reported this from Rome in The Times: ‘The Englaro case in Italy of 2009 has become a symbol of the issues about and attitudes around euthanasia; the struggle between the institutions and the individual, the church and the state, the right wing politicians and the left, the pro-life campaign and right-to-die campaigners, health services and compassionate care.’ Euthanasia is illegal in Italy but not the refusing of treatment. Polls suggested Italians were equally divided on the ‘right to die’.

Eluana Englaro died at the age of thirty-eight, four days after doctors began removing her life support. ‘Her father and friends testified that before her accident, she declared that if she ever was comatose she would not want to be kept artificially alive.’

Prime Minister Silvio Berlusconi expressed ‘deep pain and regret’ that he had failed to save Eluana’s life. An emergency decree to prevent Eluana’s death had been made, but the courts overruled it because it was not fully debated by Parliament. Cardinal Angelo Bagnasco, head of the Italian Episcopal Conference, said refusing food and water to Englaro was murder.

Because she was in a church hospital, both the Pope and Berlusconi’s centre-right government, believing they represented the feelings of most Italians, were able to intervene with the family’s wishes and the doctor’s decision. They said it was ‘a crime against humanity’ and pulled all bureaucratic strings through health inspectors investigating irregularities, saying the clinic was not qualified to help Eluana to die because it was not a hospice for the terminally ill but primarily a rest home for the aged.

However, a private clinic offered to help by stopping the artificial nutrition regime she was on. Her ‘path to death’ would be quick, and she would be given sedatives to calm muscular twitches. Her neurologist began reducing the water and nutrients that were being provided through feeding tubes. That was a decade of struggle for a dignified end according to her wishes.

Should we let authorities have the last say on this matter? Not so, says novelist Sir Terry Pratchett⁷ who was also concerned that when you die, according to British law, it is not within your control, that is, nature decides when your misery will end.¹ He was among other Britons who were suggesting that euthanasia would be appropriate for those who have been diagnosed as having up to one year to live.

Catherine Gee wrote⁸, ‘In his film (BBC Two), Pratchett sensitively tackled the extremely complicated issue of euthanasia. He declared from the outset that, in his opinion, the timing of his death should be his choice, not the government’s.’

Apparently, most of the terminally ill people he met when he travelled to Dignitas Clinic in Switzerland were utterly determined to be in charge of their own end, and their families were supportive of that. Andrew Colgan, a forty-six-year-old multiple sclerosis sufferer who had already attempted to take his own life twice, described his condition as ‘like walking down an alleyway that’s getting narrower’. The seventy-one-year-old millionaire Peter Smedley—a sufferer of motor neurone disease—took the lethal dose in front of BBC TV cameras for Pratchett’s film. Because it costs around £10,000 for many terminally ill British people, the warm, safe, relatively pain-free death offered by Dignitas is not an option.

He also met a former taxi driver who had motor neurone disease and, after considering Dignitas, had chosen to live out his days in a hospice. But Pratchett knows he wants to make that choice himself. ‘I know the time will come when words will fail me,’ he said. ‘Then, I don’t want to go on living.’

‘Pratchett admitted that his own wife, who did not want to appear in the film, wants to take care of him until the very end. She does not want him to take his own life.’

Should we let Nature take its course? A wildlife film follows the mega herd of wildebeest to point out the wonder of the balance of life on the veldts saying that evolution works to long-time effect but not to a short-term good for each creature. Twenty per cent of the wildebeest calves die from predation, disease, separation, etc. Wildebeest’s survival on a large scale seems to be a wonder, but for individuals it is still survival at the cost of great risks and suffering. The same applies to people. The wider view of survival is different from the personal view.

Neither can we take the marriage between Father Time and Mother Nature seriously. Along comes King Nick himself and melts Flora’s heart and leaves the old guy without a scythe. We best remember that the principle of self-determining has a soul-mate which is loving-kindness.

How then can we make good decisions in this matter? ‘Good intentions path the way to hell.’ And ideals are ‘given to frustrate those who think they are attainable’. Idealists have an aggressive optimism, a kind of doctrine of infallibility; so that ‘pro-lifers’ can feel accountable to nobody as they bomb an abortion clinic in the same way as the suicide bombers threaten Western cultures. In the other camp are the Church doctrines that cause stumbling blocks to humble souls who want to act kindly but are compelled to follow a ‘belief’ that they feel is wrong and makes them feel guilty. In the middle is a third group, those thoughtful people who find the liberal intellectuals

confusing and difficult to follow. John Wesley’s view of sanctification (perfection) is helpful here. Perfection is not an ideal state that exists out there but a state of consciousness (of bliss) available to all because it comes from the integrity that is within each individual.

Karl Popper’s view is also helpful; we must be both critical and creative. He (Karl Popper) advocates that sociology should be systematically aware of what he calls ‘the logic of the situation’.⁹ Of Sir John C Eccles it was said, ‘The New Zealand interlude was also notable because there Eccles met the philosopher Karl Popper from whom he learnt the relationship of the scientist to hypotheses; how to be daring in