Decision will have farreaching implications for society
It is called the End of Life Choice Act — but whose choice are we talking about, Dr Phil White wonders.
WE should all be aware by now that we are voting in a binding referendum to decide whether the End of Life Choice Act 2019 as it stands should come into force in 12 months’ time.
This is not like the United Kingdom referendum on Brexit which was binding but then left the Government to sort out how it would happen.
The Act has been agreed upon by Parliament and given Royal assent. So do we know enough about what we are being asked to vote on?
I am writing as a general practitioner who, over the last 36 years, has been privileged to share the journey of many people and their loved ones through the terminal stages of an illness, often with the help of the local hospice.
Most of these journeys, although traumatic at times, have, in retrospect, been wonderfully rewarding experiences for all concerned and the families have been able to look back and feel that they have been involved in caring for their loved ones to the last breath.
Sometimes vital conversations take place between family members in the final moments.
On occasions the dying person has slipped away peacefully once someone has turned up at the bedside, or when they are assured that those being left will be looked after, or when they have said what they wanted to and are at peace.
The process of this terminal phase is never predictable in terms of timing but care and support can be provided at all stages.
I appreciate that this is not everyone’s experience of the loss of a loved one and it is the instances where symptoms have not been able to be eased satisfactorily, or where decisions have to be made about continuing treatment or not, when the affected person is not in a position to make that decision, that may stick in our mind.
The family notices in this paper commenting on deaths at home or in hospital or in the hospice “peacefully surrounded by their loving family” suggest that many cherish the opportunity to care and share in the dying process.
I have concerns about the Act itself.
Nowhere does it acknowledge the Crown’s responsibility to give effect to the principles of Te
Tiriti o Waitangi and as far as I am aware there has been no consultation with Maori, Pacific Island or other important ethnic and cultural groups.
The eligibility criteria laid out for assisted dying are mostly not easy to measure — I can easily check if someone is 18 years and over and a New Zealand citizen or permanent resident but it is very difficult to predict that an illness will cause death within one week let alone as far away as six months.
In fact, diagnosis is an imprecise science and some patients with supposedly terminal conditions end up being discharged from the hospice programme after 12 months or so because their illness has turned out not to be terminal.
How are doctors, potentially on their first meeting with an individual, expected to measure the state of their physical capability, their level of suffering, their competence to make a lifethreatening decision, let alone whether the person is under any pressure or coercion to make that decision?
There is no requirement to assess the individual’s mental health — it will not come as a surprise to know that individuals with a terminal illness go through periods of anxiety and depression and may express the wish to die early.
There is no prescribed coolingoff period — the Ministry of Health thinks the process from signing the forms to the assisted dying might take as little as four days.
I also have concerns that, as I read it, there is no requirement for the second certifying doctor to be licensed to work in New Zealand and potentially he or she could fulfil the requirements while based overseas.
I am not aware of any medical assessment or treatment that can be undertaken in New Zealand without the doctor being licensed with the New Zealand Medical Council, far less one that concerns such weighty matters of life and death.
To put icing on the cake, when death has occurred despite assisted dying being legal, there are criminal penalties for talking about it — it is not permitted to mention it on death or cremation certificates and for insurance purposes it is to be taken that assisted dying has not happened.
Overseas experience suggests that eligibility criteria are quickly loosened or interpreted liberally.
For instance, in the Netherlands, with possibly the longest history of assisted dying, it is now legal for babies up to the age of 1 who have intractable suffering with no prospect of improvement to be assisted to die, as can 12 to 15yearolds with parental consent.
Cases are reported of assisted dying for patients with psychiatric conditions as the sole reason and for patients with dementia.
In Canada, where legislation is relatively recent, it is legal for anyone over 18 years of age with grievous and irremediable conditions.
Legal challenges and reviews are being tabled arguing that setting age limits and predicted times of death are against human rights now that assisted dying is legal for some.
Jurisdictions which have legalised assisted dying generally do not have good palliative care services.
New Zealand’s hospice care is consistently ranked in the top three in the world alongside the UK and Australia. Do we want to devalue these services and potentially affect the funding and the continuing development of the care they provide?
There are no international examples of any jurisdiction reversing or tightening up eligibility criteria.
The socalled “slippery slope” has proved to be a reality across the world.
How about the issue of
“choice” embodied in the name of the Act itself. Whose choice is it?
The person who does have a terminal illness likely to die within a short period and despite good efforts is experiencing severe symptoms that are difficult to control (fortunately with good palliative care such cases are in the minority)?
The person who has been diagnosed with a terminal illness, likely to die within six months and is not suffering particularly at the moment but is worried about the indignity of the dying process and would like to know that the comfort of assisted dying is an option?
The person who has just been diagnosed with a terminal illness but is not expected to die within a year or two with suitable treatment?
The older person who feels that their life is worthless and that they are a burden on their family and society?
The residents of agedcare facilities and their families?
The family who are struggling to care for and support family members who are frail or living with disabilities?
The family who receive notification out of the blue that their loved one has died and are not even informed that it was by assisted dying, let alone that their relative was contemplating this action?
People living with disabilities who are worried about the implications on their level of care and support or the pressures that may be put upon them to request assisted dying?
People contemplating suicide who may feel justified in taking action because a family member has received assistance to die (physicianassisted suicide)?
Is it our society’s choice that we should expose the vulnerable in our communities to the pressure of assisted dying rather than look at ways to increase the care, comfort, support and value that we grant them?
Where does “compassion’’ (originating from the Latin for suffering with or alongside) fit in? How will it affect an individual’s relationship with the doctors and nurses who are looking after them in whatever role?
I would encourage everyone to think long and hard and inform themselves about the
Act (it is surprisingly a quick read) in order that they can wisely cast their vote about something that has such farreaching implications for our society.