End of Life Choice to be reviewed 

NZ’s End of Life Choice Act became Law in November 2021 in response to decades of debate, research and mounting public pressure, including a Referendum. The legislation and its implementation faces its first formal review this November.

The law allows New Zealanders, suffering unbearably and irremediably as they are dying, to choose an Assisted Death to end their suffering. 

The numbers are small, the suffering is not. Good hospice/palliative care (H/PC) is enough for most of us, but some 6-8% of patients still experience very severe suffering as they die (data from Palliative Care Australia). In NZ over 75% 0f those who have accessed an Assisted death were also receiving H/PC.

To put this in context, in 2022 and 2023 combined there have been 76,458 deaths in total and fewer than 700 of these have been Assisted Deaths, less than 1%; currently about 20% of applications are declined, at least initially.

Our Act is extremely strict with multiple access criteria. It is demonstrably very safe; it is also demonstrably inequitable, currently excluding some of the suffering dying who need it most. 

With the first formal review of the Law due in November this year, this is an important moment to reflect, and push for improvements.

The End of Life Choice Society of New Zealand (EOLCSNZ) are suggesting some relatively minor but important updates to make it fairer, more fit for purpose, more aligned with our Human Rights Laws and with similar legislation overseas, without affecting the safeguards.

One of the most obviously unfair criteria is the requirement that you must have a prognosis of six months or less to live, to qualify for an Assisted Death. 

In many ways this is a nonsense. Accurate prognosis, in this group with complex medical issues, is often really difficult and inaccurate. In practice, this rule favours those dying of cancer and mostly excludes those with chronic degenerative neurological diseases – Huntington’s Disease, MS, Motor Neurone Disease etc, and those dying of chronic severe lung and heart disease who are sometimes condemned to suffer horribly for much longer than six months. This is reflected in the current statistics.

Disease/Condition	Cause of death in population	Cause of assisted death
Cardio-vascular disease	31%	5%
Cancer	30%	68%

Many other jurisdictions now recognise this and have changed or are changing their laws removing the time limit, so that unbearable, irremediable suffering is the requirement. The other criteria remain.

Another unhelpful and possibly unethical rule is what is now known as the “gag” clause. 

It is illegal for doctors discussing end of life choices with dying patients to include an Assisted Death as one of the options. They can only discuss this if the patient actually asks about it. In this situation, as in many complex scenarios, doctors take care to discuss all options available to the patient, so this gag is under ethical scrutiny. 

What it means in practice, is that some patients who might well choose an Assisted Death because of their increasing suffering, but who don’t know about this choice or are too anxious to raise it, cannot access the law. 

Doctors who are opposed to Assisted Deaths for religious or other conscience related reasons, should still raise the possibility, even if they refer the patient to a colleague to discuss it.

Another sad situation which sometimes causes great heartache, occurs when a suffering, dying patient has been accepted for an Assisted Death, but has lost mental competence by the time the process is completed, because of disease progression, drug related side effects, or both. 

If, on the date chosen, they are unable to confirm that they still want what they have been struggling to get, they are no longer eligible and are then declined. Some patients realise this might happen and stop their symptom control medications, in order to be able to make that final consent, which of course increases their suffering.  EOLCSNZ suggest that they could sign a Waiver of Final Consent in advance in case it is needed. 

Many of us are familiar with the concept of an Advance Directive, or an Advance Care Plan and have completed and lodged our own. These documents, which are valuable for the dying patient and those who love them and care for them, clarify what we would choose if we could speak for ourselves. EOLCSNZ would like to see these attached to all patient notes, clearly visible and easily accessible. 

Dementia patients are not yet well catered for under the current Law and may suffer for years, tragic for them and for those who love them. EOLCSNZ suggest that dementia patients, while they are still of sound mind, should be able to complete a special Advance Request, describing the point at which they would like to end their lives to avoid the suffering of advanced dementia.

In NZ our health services are under significant strain; we are currently training Nurse Practitioners (NPs) to help manage this. NPs are able to undertake many interventions previously restricted to doctors, including the excellent training to become an Assisted Death provider, but are not yet allowed to actually provide the service.  EOLCSNZ feel this is a role where these trained NPs could be invaluable.

NZ has a relatively small population spread over a wide area. Those of us who live remotely have to travel significant distances to access medical care and this becomes an issue when we are frail, suffering and dying. EOLCSNZ would like to ease this burden of travel for patients and Assisted Death providers by allowing some initial interviews to be via zoom.

While we feel our Law could be safely improved, it is important to acknowledge that in its current form it works well, but only for some of us who need it. 

The feedback from people who have managed to access an Assisted Death and from their whanau, is consistently very positive. Particularly moving comments relate to the profound and overwhelming sense of relief, and gratitude of knowing that the suffering can be ended peacefully when they choose. 

This is palliation in itself and often enables families to make the best of the time left. This feedback from families is mirrored by that from providers of the service, who talk about the special privilege it is to be able to help in these intense situations, and how peaceful such deaths are.