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A Good Death

A Good Death

 

We all knew, as our mother got older that she wanted the “plug” pulled when the time came. In her view of the world, if she couldn’t have a drink or a smoke under her own steam, as her saying went, it was time to go. Hers was a position of utter belief in the worth of independence and autonomy. Anything other than an independent life was not worth living. At the age of 78, robbed of her precious independence by lung cancer and dementia, she smoked her last cigarette in the smokers’ yard at the Bethesda Rest Home & Hospital and left us a couple of days later, in 2015. As I cleaned out years of yellowed correspondence from her house a few days after her death, there were dozens of newsletters from the End of Life Choice Society. I felt sad for my Mum at the frustration of her beloved choice. I don’t think she ever knew how utterly dependent she became, in the end. But then again, as I have written elsewhere, her tiny life at the end still had beauty in it.

There is much to admire in my mother’s stance on end-of-life choice, one shared with at least some of her friends. They wanted, and still want, the power and the right to determine their lives’ ends. The scenario to haunt their dreams and to avoid at all costs, is one of being tethered to machines, with life’s pleasures stolen away, and intolerable pain, all signalling the worst thing of all: utter dependence. The dependent life, on this view, is no life at all. There is a great value placed on the idea of freedom of choice. Its antithesis, the absence of choice, is something to be feared and avoided. On this thinking a chosen death is a noble and compassionate death. An unchosen lingering death is ignoble and cruel.

Of course, there is much more to that debate.

There are all kinds of factors that play into the debate on assisted dying in New Zealand at present, lately manifested in response to David Seymour’s private member’s Bill still awaiting its second reading as at the time of writing. Often, the entry into the debate is by way of stories. The story of Lecretia Seales, and her fight in the courts to enable her doctor to assist her to die was compelling. There is no shortage of compelling stories that provoke our pity and fear for those caught up in those narratives, like Peter and Patricia Shaw, an Australian couple who killed themselves in October 2015, or the terminally ill 9 and 11 year old Belgian children who have been the youngest to be euthanised in that country in 2018. But a law on euthanasia needs more than the most compelling narrative.

I sometimes get asked what the “Māori perspective” is on assisted dying. I can’t pretend any expertise on this or to speak for Māori communities. There are many perspectives, although only rarely expressed in the public domain. However, some of those whakaaro have been reported by the Justice select committee on the End of Life Choice Bill. So I’ll let the Committee report back:

Although not all submitters who identified as Māori oppose the bill or consider it inconsistent with Māori tikanga (values), others have several concerns. Submitters described a Māori worldview where people are part of their whānau, hapū, and iwi, where care, respect, and reverence are shown for the elderly and terminally ill, and life and wairua (spirituality) are valued. Some believe that assisted dying would breach the tapu (sacredness) of the person and have spiritual consequences for those involved. Some submitters consider that the bill would breach the Treaty of Waitangi. In particular, they cited the Treaty’s underlying principle of tiaki (protection) of Māori values and, under Article 2, the concept of the taonga (treasure) of life. Other submitters consider that the bill would contravene holistic models of Māori health, such as Te Whare Tapa Whā, which sets out four equally balanced foundations of Māori health: physical, spiritual, family, and mental.

It is possible to imagine an assisted death taking place in the context of a warm and loving whānau environment. The range of viewpoints suggest that Māori are not of one collective mind in regards to how tikanga Māori may or may not fit with the idea of assisted dying. However, there are pragmatic concerns of more urgency. Many of the submitters on the Bill were just as concerned that racial inequities already existing in the New Zealand health system will be magnified with the introduction of assisted dying:

Some submitters believe that assisted dying would further contribute to discrimination and prejudice that already exists in the health system. They consider that Māori and Pasifika are less likely to be able to pay for health care, and that they receive lower standards of care and have less access to palliative care. Therefore, they believe these groups will be disproportionately more likely to request assisted dying than other groups. Submitters also believe that these groups are less likely to be treated by health practitioners of their own culture or those who understand their world view. They regard it as important that health practitioners understand the correct procedures for tāngata māuiui (sick people), their transition to death, and the treatment of tūpāpaku (the deceased).

The position described above is supported by  research by the Kia Ngāwari study (2010–2012) funded by the Health Research Council of New Zealand, a study of 27 whānau Māori that reveals how important collective processes often are for whānau Māori at end-of-life and how Māori are less likely to be able access sufficient palliative care. Rangatiratanga is vitally important for dying Māori too, but being able to exercise rangatiratanga fully means that whānau must be resourced properly:

…the economic and material ramifications of colonialism impact on Māori hugely at the end of life, directly influencing the ability of whānau to identify and access much needed resources and palliative care support. Generally, only whānau who had a family member with a tertiary qualification or employment within a health or related field were well placed to identify and access much needed statutory support, palliative care and resources. Knowledge of the health system, or previous use of specialist palliative care services, increased the likelihood of some whānau accessing palliative care support and resources. When combined, these things strengthened whānau to provide the best care, frequently under difficult circumstances.

One of the greatest questions about the prospect of assisted dying being enacted in New Zealand law arises because the proposed legislation establishes a process that presumes an individual can make a true choice to die. Many of the submitters opposed to Seymour’s Bill cite the problem of the vulnerable person being pressured or coerced to die by others. Dr John Kleinsman identified 5 types of vulnerability as an expert witness to the High Court in Lecretia Seales’ case.

communication vulnerability, represented by persons who are impaired in their ability to communicate because of distressing symptoms;

institutional vulnerability, which refers to persons who exist under the authority of others;

differential vulnerability, which includes persons who are subject to the informal authority or independent interests of others;

medical vulnerability, which refers to those with distressing medical conditions; and:

social vulnerability, which includes persons who are considered to belong to an undervalued social group.

While Lecretia Seales absolutely denied that she was in any way vulnerable as described in any of these categories, whānau Māori with dying members are likely to fulfil some or all of these vulnerability categories. As pointed out by Dr Hūhana Hickey Māori are also more likely to be experiencing disability, and thus more likely to be considered vulnerable in that context as well. As noted by the Disability Commissioner, the priority should be that disabled people should be enabled to exercise the choice to live:

Before the country legislated choice in death, it needed to work towards ensuring, to the greatest extent possible, all people had the same freedom of choice in life.

In any event, what would be the nature of the choice to die for any person in any of these categories?

Often to be found at the very heart of our general Western legal system is the notion of the freely choosing individual, the individual rights-bearer. The person who, when faced with a choice of courses of action, is capable of choosing one of those courses of action. Such individuals must have free will in order to exercise a real choice; an idea that is powerful and optimistic. Thousands of years of philosophical and religious thought have also upheld this idea, particularly in the West, that humans can, for example, choose obedience to a deity or a principle, or a moral.  Why not assisted dying?

At the heart of much opposition to the End of Life Choice Bill is a denial that all choice exercised under such legislation will truly be free. Those who oppose the legislation on a vulnerability basis will identify that there is no level of security that the Bill can offer that will reassure them that the choice to die in every single case will be freely made. Those who cannot truly and freely choose should be protected by the state, not exposed to greater risk of death. An open letter signed by more than 170 lawyers put it this way:

We believe that the mark of our civilised society is measured by the manner in which we treat and protect our weakest and most vulnerable members. While the Bill purports to be targeted to a “small but significant group of competent adults who are not vulnerable and who wish to die without unbearable suffering and pain”, we consider that it will in fact place many vulnerable members of our community (whether terminally or chronically ill, disabled or mentally ill) at greater risk of premature death by homicide or suicide as a result of neglect, coercion and other forms of abuse, as well as misdiagnosis or prognostic error and uncertainty.

I would count myself in that camp. Well, I should do. I signed the open letter. At present, all that stands between a vulnerable  person making a decision to die and the enactment of such a decision in the Bill, are a set of criteria. A qualifying person must be one who, on the current form of the Bill:

(4) […]

(c) suffers from—

(i) a terminal illness that is likely to end the person’s life within 6 months; or

(ii) a grievous and irremediable medical condition; and

(d) is in an advanced state of irreversible decline in capability; and

(e) experiences unbearable suffering that cannot be relieved in a manner that the person considers tolerable; and(f) has the ability to understand—

(i) the nature of assisted dying; and

(ii) the consequences for them of assisted dying.

At present, to ensure coercion does not exist, the certifying medical practitioner must:

8 […]

(h) do their best to ensure that the person expresses their wish free from pressure from any other person by—

(i) conferring with other health practitioners who are in regular contact with the      person; and

(ii) conferring with members of the person’s family approved by the person; [..]

David Seymour, responding to submitters’ concerns, has proposed significant changes, including deleting the option under s4(c)(ii). In that case, only those facing a terminal condition would be eligible for assisted dying. He has also proposed strengthening the protection against coercion so that a certifying medical practitioner must be “satisfied” that no coercion exists.

I suspect though that even with these changes, little will change between the entrenched positions of this debate. Few on this side of the maunga are ever likely to accept that any caution or protection that may be inserted in the legislation can ever bring about true protection of the vulnerable, whoever we conceive the vulnerable to be. For many, I suspect the opposition lies more deeply than that and depends on a particular vision of humanity. We tend, I think, to divide into those two great camps; those for whom the idea of the autonomous individual is supreme, and those for whom human interconnectedness is the greater vision. The dividing line between these positions can be porous, it’s true, but the camps exist, and don’t neatly align with political concepts of left and right.

An additional and often unspoken factor in the public discourse is that many like me who have a religious faith have an understanding that we are dependent on what we conceive of as the Divine, as well as on each other, for our existence. This understanding of dependent existence will always make an assisted dying regime difficult (but not impossible) to accept. For others, such a position can be utterly offensive and even a denigration of autonomous individual personhood.

My mother and I resided in those two different camps and respected each other’s position. Perhaps the more salient point is that my brothers and I, because of excellent palliative care, were able to come together, in love, to accompany our mother to the veil, but not beyond, at the close of her day. Equitable and free access to excellent palliative care and a good death, as far as it is possible, should be upheld by law and policy for each one of us. The truly terrible thing is that it is not. assisted dying legislation represents an absence of hope that it ever will be.

[Please note, this column was first published on E-Tangata]

Photo Credit: Gina Smith.

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In the Waiting Place.

Are there any such things as ghosts of those who still cling to life, I wonder? I feel my mother here in her house, the house where I grew up. I hear her, beyond the range of my real hearing, moving about the house, softly. Carrying her hot water bottle up to bed. Moving softly outside to feed the birds, the creak upstairs must be her on her way to the loo, probably clutching the ever-present transistor radio. I hear the oven door closing. I can smell her too, or at least, the tobacco smoke, that ever-present blue haze, accompanied by the hacking cough. I can sense her sitting at the dining room table ruminating over the crosswords, adding items to the shopping list, keeping up with the diary. Cackling quietly to herself over some absurdity in the paper. I hear the shuffle of the spindly wooden chair as she stands on tiptoe to peer over the top of the fence onto Papanui Road for the latest local outrage to get her juices flowing. She always watches The Road. The missing recycling bins; the occasional vandalised letterboxes; and the sniffy reproachfulness of Her Next Door, who (apparently) everybody round here loathes. The Road is a living stream of cars, people, dogs, bikes, news, and the rumbling buses belching their payload of gritty exhaust fumes, mimicking little earthquakes that nobody needs. And then there is her little green oasis nestled between the house and the fence. The place where the birds come to feed and talk. The broken birdbath, the dishes with honey water and the containers with breadscraps. I can hear her “took-took”ing to the birds. Not those bloody starlings though. No truck with those bloody bullies. Wax-eyes, sparrows, fantails…and before the earthquakes, the hedgehogs. We wonder where he little hedgehog family went to, four years ago. She misses them.

I am sitting here at 2am in the morning and I am waiting for the bang of the poker on the floor upstairs to let me know it’s time to Turn That Bloody TV Off. I’m waiting for the turn of the handle of the door into the hallway and for her to drift into the room on her way to put the kettle on. She’s going to be pretty mad. Never the tidiest of people, I have let the lounge in which I am camping turn into, well, a freedom camper’s paradise. Minus the poo, at least.

So I can hear all these things and see them all too, if I close my eyes and block out the Emmerdale marathon on TV. But she isn’t here, and she never will be again. At least, I don’t think so. Not until she lies here and we gather for her.

My mother is sleeping fitfully, no doubt, a few streets over, at the Home Hospital. Her mind and body wander now, and she is waiting for the close of this chapter. I’ll go back tomorrow to sit with her. I’ll marvel anew at the kind of ethereal beauty that has come upon her recently as she slips just a little further away from us. She slips in and out of this world and then she’ll blindside me with her wit and knowingness. And then she’s off again into a world we can’t really enter. Her knees are enormous. That’s what happens when the flesh disappears from every other part of her body. Joints become bulbous.

Smoking, the one thing that gave her The Passenger, as she calls her tumour, the one thing that put her in hospital last month and into 24 hour end-of-life care this month, is also the thing that gives her days rhythm, her movements purpose. The crosswords and diary sit unfilled, except by us, her children, as we try to fill in the gaps, perhaps to hold out to the world that there is still continuity with that old life. Twice a day comes the pilgrimage, the slow wander with the walker, or lately, the wheelchair, to the scruffy green patch, with the tables and plastic chairs, where she lights her cigarette, breathes deeply, and sighs in contentment. The smoke floats around her like a deadly nimbus; but the irony still pinches. That one thing that puts her here, is the one thing that gives her any remnant of her owned life now. She picked up her first cigarette at the age of 15 in Eastbourne, about the time she left school and her parents divorced, around 1951. She thinks she pinched one of her dad’s. Well, they all smoked. And now, she revels in the camaraderie of the shunned. She smokes out here with the staff and with a couple of the residents. She’ll smoke alone if you let her, and the cigarette perches weakly between her fingers with the ash always threatening to drop onto her lap. The smoke wreathes me too, and I breathe it in.

The other day one of the new nurses joined us; a lovely young lady in her twenties. As my brother said later, she knows, surely, that my mother may be her future. If so, she gives no sign, just her kind smile.

So much kindness at that place. When she had a terrible pain break through the slow-release morphine fug yesterday, our mother wept, and her eyes were wide with fear. I pressed the call-button willing my own tears to stay inside, and within seconds the nurses were there, bustling, stroking, soothing, administering, watching. “Don’t scare me like that!’ said one, not because the situation was beyond her ken, but because she just didn’t want my mum to be in that terrible pain. Neither do we.

Well. Perhaps time to try and sleep again, before the tears burst out again and the sounds of my mother’s not-yet ghost once again inhabit these quiet hours.

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