Doctors say the current wording of the act is leaving many Kiwis out. Photo / 123rf
Doctors say the current wording of the act is leaving many Kiwis out. Photo / 123rf
A group of doctors who perform assisted dying in New Zealand have written an open letter calling on the government to change the current wording of the End of Life Choice Act which, they say, excludes Kiwis due to an arbitrary deadline.
The medical experts say the current law is failing the Kiwis it is meant to be serving and point out inequities in the access to the service.
According to the signatories of the letter, the issues are caused by the wording of the End of the Life Choice Act 2019. “In order to get the legislation through parliament, politicians were allowed to damage and weaken the text, removing the originally proposed “grievous and irremediable medical condition” clause thereby leaving only a ‘terminal illness likely to end the person’s life within six months’,” the letter authors state.
A third of the ineligible patients who were declined assisted dying in the law’s first year were declined because they didn’t meet the criteria of having a terminal illness likely to end their lives within six months.
The doctors who signed and endorsed the letter call on the Government to broaden the law to remove the requirement that a patient has only six months to live in order to qualify for assisted dying.
The same criticism was previously raised by the law’s architect, Act Party leader David Seymour who maintains that the law needs to change.
Seymour, who introduced the law to parliament in 2017, says what the doctors are calling for in the letter is “consistent” with what he originally expected the law to deliver.
Act Party leader David Seymour. Photo / Marty Melville
“The six-month limit was put in place purely as a political compromise because there were some people unwilling to vote for it in the original form,” Seymour told the Herald.
“I never resiled from the original position, which is the right one,” he added.
Seymour also agreed that there are a range of illnesses that, despite not causing death in the short-term, “condemn people to long periods of suffering” and should be included in the law. He gives the examples of motor neurone disease and Huntington’s disease.
In their letter, the doctors also call on the Government to change the act to allow dementia and Parkinson’s sufferers, among others, the right to access assisted dying in New Zealand.
The End-of-Life Choice Society NZ says the current wording of the law means too many people are being left out.
They state that “a growing number of assisted dying practitioners, patients and families who would like to see the option of assisted dying extended more equitably to grievously and irremediably suffering patients”.
The first-year report on assisted dying in Aotearoa New Zealand has been released by the Ministry of Health. It shows that 257 people accessed assisted dying between November 2021 and November 2022. There were 661 applicants, with 74 applications still open at the closing date. A total of 129 were found ineligible and 140 died during the process of application. Cancer accounted for 68% of underlying causes and 77% were receiving palliative care at the time of making their application.
No medical practitioner reading the report can fail to notice the enormous discrepancy between cancer as the leading cause of assisted deaths (68%) versus cancer as a cause of death in the general population (around 25%). On the other hand, cardiovascular disease which we have known for years to be the commonest cause of death in New Zealand features as the cause of only 5% of assisted deaths.
The distortion of reality is caused simply by the wording of the End of Life Choice Act 2019. In order to get the legislation through parliament, politicians were allowed to damage and weaken the text, removing the originally proposed “grievous and irremediable medical condition” clause thereby leaving only a “terminal illness likely to end the person’s life within 6 months”.
This immediately created access difficulties for patients with a host of diseases. Among others these include neuro-degenerative disease such as Parkinson’s, Huntington’s, multiple sclerosis, advanced congenital disease, post infectious conditions such as post-polio syndrome, severe cardiovascular disease and advanced, irreversible lung disease.
If the objective of legalising assisted dying as an end-of-life option was to relieve unbearable suffering that cannot otherwise be relieved, it has utterly failed these patients.
So what needs to happen? Here are some thoughts based on the observation of well-regulated assisted dying medical practice in overseas jurisdictions. They include the Netherlands, Belgium, Canada, Queensland and Tasmania.
Firstly, we need to remove the gag on doctors’ initiating discussion about assisted dying as one in a range of options for care with their end-of-life patients.
Rationale: The current requirement for the patient to raise the topic forces inequity into the assisted dying service. Only well-informed patients know this, and only self-assertive patients feel comfortable to do so.
Denying patients equal access to medical advice is indefensible.
Secondly, an eligibility clause that covers the “grievous and irremediable medical condition” category explained needs to be re-instated. The additional qualifiers of being “in an advanced state of irreversible decline in physical capability” and of “experiencing unbearable suffering that cannot be relieved in any manner tolerable to the patient” can remain as part of the essential safeguards.
Rationale: “Unbearable suffering that cannot be relieved” should be the overriding reason for access to assisted dying. Limiting access to those with a 6-month prognosis inevitably leads to exclusion for some patients who are experiencing unbearable and unrelenting suffering, but who don’t meet this arbitrary cut-off.
Thirdly, we have observed the tragic repercussions of requiring a patient to remain mentally competent until the last minute. To address this, Canada has introduced a “Waiver of Final Consent” for patients deemed by their attending medical practitioner to be at risk of losing competency after being found eligible at both assessments, but before administration of the medication. We should do the same.
Rationale: Some patients choose to forego pain-relief medication as it may compromise their cognitive abilities on the appointed date. It is unacceptable to require this already acutely suffering group to suffer more in order to qualify for assisted dying.
Finally, we need to tackle the fraught issue of assisted dying for dementia patients by way of an advance directive. This is possible with a documented pathway that commences at the patient’s request while they still have medical decision-making capacity. An advance directive form would clearly spell out the conditions under which the patient wishes assisted dying. Regular reviews would be required during the period of competency to ensure the enduring nature of the patient’s wishes.
Rationale: Many patients are concerned about a diagnosis of dementia, especially if they have personally witnessed its ravages on a loved one. Although it is possible for those living with dementia to experience a good quality of life in care, it should be the patient who decides whether a life of dependency and a loss of mental competence is acceptable to them or not.
We confirm our unequivocal support for palliative care and for increased government funding to it. But we cannot overlook the fact that 77% of applicants for assisted dying were already receiving palliative care at the time of applying and yet were assessed by two consecutive and independent medical practitioners as “experiencing unbearable suffering that cannot be relieved in any manner tolerable to the patient”. There is much suffering at the end of life that palliative care cannot relieve or remove. This may be because:
Palliative care occupies itself mainly with the relief of physical suffering, but loss of capability and loss of autonomy can induce suffering that cannot always be palliated.
Some medical conditions are beyond even the best options for physical pain relief. Fungating cancer lesions, bowel obstructions, nerve pain, unrelenting shortness of breath and many other conditions can lead to a “bad death”, despite the best medical attempts at palliation.
Some patients will be unable to tolerate the significant side-effects caused by medications, including loss of mental clarity and cognitive function which increase their symptom burden.
As the End of Life Choice Act currently stands, it is good for the fraction of patients who can jump though all the hurdles to access it. But too many who need it are left out. The authors of this article speak for a growing number of assisted dying practitioners, patients and families who would like to see the option of assisted dying extended more equitably to grievously and irremediably suffering patients.
A review of the legislation will commence in November 2024. This is the public’s chance to see law modified to help those deserving but ineligible patients – to grant them the option of turning their end-of-life suffering into a “good death”. The law can, and must, do better.
