At the coming election, voters will be asked to answer the referendum question “Do you support the End of Life Choice Act 20191 coming into force?”
If a majority vote Yes then this Act will come into force without further amendment.
The focus of discussion has almost exclusively been around the ethical question of whether, in the circumstances described in the Act, it is ethical to proceed with medically assisted aid in dying.
There has been little discussion about whether, if we accept this is ethical, introducing a regimen to enable this is a sufficient current health priority to justify the funding required to operationalise the Act.
In the event that the referendum supports the enactment of this Act there would need to be a significant allocation of resources to establish and maintain a system to deliver the requirements of the Act.
This represents an opportunity cost, as these resources cannot be spent on other aspects of the health system, for example, enhancing palliative care services.
A significant bureaucracy would need to be established.
The Director-General of Health would have to appoint a registrar, an end of life review committee, and the Support and Consultation for End of Life in New Zealand (SCENZ) group.
The SCENZ group has many tasks listed in section 25 particularly including developing and maintaining registers of all the practitioners who are prepared to provide services under the Act and providing and promulgating standards of care.
Changing the status quo now will require a focus on this issue and take attention away from the much more serious issues of responding to the Covid-19 pandemic and to the Simpson review of the health system.
To develop the registers, every doctor, nurse practitioner, pharmacist and psychiatrist in the country would need to be consulted over whether to make themselves available under the Act or whether they will invoke their right to conscientious objection.
All health institutions (public hospitals, private hospitals, hospices, general practices, pharmacies, and others) would need to develop policies addressing how they would respond to requests for medical assistance in dying.
Given the strength of feeling around this issue, developing these policies may be difficult, and hence resource-intensive, as those working in the institutions may not agree as to what should happen.
As well as these costs of setting up systems to implement the Act, there would also be ongoing costs of assessing and managing people requesting assisted death.
Given that there will only be a small number of people seeking assisted dying it is likely that if the “attending medical/nurse practitioner” (likely the patient’s usual GP/nurse or hospital specialist) considers the request, they will need to spend time becoming familiar with the Act, accessing all the forms required by the Act, and ensuring that they have the appropriate knowledge and skill to administer the lethal dose of medication.
As the regular doctor, they will already have information relating to all the matters to be considered: prognosis, the irreversibility of the condition, and having knowledge of their social circumstances to be able to judge whether they are free from pressure.
If instead the “attending medical practitioner” chooses to refer to a “replacement medical practitioner” then that practitioner will need to spend significant time coming to grips with these issues.
Whoever is responsible needs to ensure understanding of alternatives to end of life care, the process of assisted dying, and encourage the patient to discuss their wish with family and friends.
If there is any doubt, they will need to refer to either another practitioner or a psychiatrist.
On administering the medication, the practitioner must be available until the patient dies; within the same room or close by.
The experience in Oregon, which has had similar legislation in force for 22 years, has found that the time from ingestion to death is a median of 51mins (range 1min-47 hours).
Finally, there are considerable reporting requirements. Overall, the time commitment required from the “attending medical practitioner” or “replacement medical practitioner” will be substantial.
Nowhere in the Act is there any mention of funding for the practitioners involved in enabling assistance in dying.
There are two extreme options with the likely end service somewhere between these two extremes.
The first option would be a fully public-provided service with higher opportunity cost to the state, but no patient fee.
It is unlikely that a fully publicly-funded option will be available. We already know that it is very unlikely that these services will be provided from hospices.
The ethical debate is unlikely to reach consensus.
However, this referendum is also about allocating scarce health care resources on providing an assisted dying service (assuming it has an element of state funding), which will disproportionately be used by the affluent and educated.
Given the pressure on psychiatric services, it would seem unlikely that a District Health Board (DHB)-employed psychiatrist will be available to provide services under this Act.
There is no requirement in the Act that DHBs provide these services and unless they are provided explicit funding, it would seem likely that they will decline to provide them.
The second option would be a for-profit service as, for example, happened for the provision of abortions.
In years past when abortion services were not available in all DHBs, women could go (and still do go) to the Auckland Medical Aid Centre. Were this option to be developed, the opportunity cost to the state would be less; limited to setting up and maintaining the bureaucracy required for accountability, but the cost to the patient would likely be substantial.
Combined with the difficulty that terminally ill people may have with travelling, this option would likely severely limit access to the service.
If the Act is enacted it is likely the service would be somewhere between these two extremes, but likely closer to the for-profit end. Continue reading
- Dr Ben Gray is a senior lecturer at the Department of Primary Health Care and General Practice at the University of Otago.
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