Post Implementation Review - Assisted Dying Service

Background

Assisted dying involves a person who is experiencing unbearable suffering from a terminal illness taking or being given medication to end their life. New Zealanders aged 18 or over who have a terminal illness that is likely to end their life within six months may be able to access assisted dying. There are strict eligibility criteria to have an assisted death and not everyone with a terminal illness will be eligible.

The framework for the service, its eligibility criteria and safeguards are set out in the law, called the End of Life Choice Act 2019 (the Act).

The Act was passed by the government in 2019 and ratified via public referendum at the 2020 General Election. Since the Act came into force on 7 November 2021, Manatū Hauora – the Ministry of Health (the Ministry) has been responsible for administering the Act and implementing a system that allows for the provision of assisted dying for eligible people.

Overview – Purpose of the review

The Ministry commissioned an independent review of the first year (7 November 2021 – 6 November 2022) of the assisted dying service from research company Malatest International. The purpose of the review was to provide feedback to inform ongoing development of the assisted dying service.

Key objectives of the review were to indicate whether the service has been implemented in a way that:

• reflects the Ministry’s obligations under Te Tiriti o Waitangi
• upholds the intention of the Act.

The legislative framework and experiences of applicants and whānau were out of scope for this review. A mandated full legislative review will be completed three years post-implementation in 2024.

Method – How the review was conducted

The review was conducted over three months as a regulatory assurance activity, exploring the following themes:

• workforce development
• relationships and communication
• system and processes
• service delivery
• governance and leadership
• quality assurance.

The approach included analysis of qualitative and quantitative information. This involved a review of key documents and resources, as well as engagement and interviews with a wide range of service delivery stakeholders. Interviews were held with practitioners, Te Apārangi (Māori partnership alliance), members of the Secretariat, Support and Consultation for End of Life Group in New Zealand (SCENZ) and End of Life Review Committee to provide a well-informed review.

A practitioner survey was used to gain insight into practitioners’ experience during the first year of service. Practitioners were also given the option to meet independently with the reviewers.

Summary of outcomes

Te Tiriti o Waitangi

The review found the assisted dying service has been well developed to provide protection for Māori seeking an assisted death. Māori were identified as involved in service development, with positive feedback from members of Te Apārangi noting they had a feeling of inclusion.

The review identified that funding for practitioner travel provides options for Māori with practitioners having demonstrated flexibility in providing assisted dying services in a variety of communities outside of their residing region. Additionally ethnicity data is collected as part of monitoring Māori access to assisted dying to ensure equitable service access. This data is published in routine quarterly reporting.

Through reviewing key documents and resources, the review found that the Ministry implemented assisted dying services with an equity perspective. 
The Pae Ora (Healthy Futures) Act 2022 has set out the vision for achieving equity. There is a need to build further on the foundation and ensure the Ministry continues to meet its Te Tiriti obligations. Developing a diverse practitioner workforce and building practitioner confidence to support whānau Māori were identified as tangible ways to build on the existing foundation.

Service provision

Findings from the review of key documents and resources, and engagement with stakeholders identified that the Ministry has established a process for assisted dying that is robust and trusted, upholding the intention of the Act. 
It was identified that processes have been developed over time and in response to identified opportunities, for example the medication kit has been expanded to include items that practitioners have asked for.  

The review found opportunities for improvement including:

• enhancements to the technology system that will enable improved data capture
• increased support for the workforce
• the separation of regulatory and operational functions to strengthen oversight and align with the recent health sector reform.

Non-workforce interviews identified the desire to further develop public and health sector awareness and understanding of the Act. This also highlights the opportunity to improve information for whānau and children.

The review determined that the Secretariat team feels well supported to draw on each other’s expertise, and the team are well supported within the Regulation and Monitoring directorate at the Ministry of Health.

Practitioner workforce

170 Practitioners who had completed Assisted Dying Training were invited by Malatest International to answer an online survey about their experiences. The survey was completed by 41%. Results from this survey showed: 

• Most practitioners (87%) said they were very or quite confident in delivering assisted dying services overall. However, they felt less confident about providing services to Māori and Pacific people.
• Most practitioners (79%) thought the Assisted Dying Service model and the process was very good or adequate, with only 21% feeling it needed improvement.
• Practitioners were positive about the training they received and felt well-prepared (75%).
• Practitioners requested more peer and cultural support and more practical training and peer learning. They also made suggested improvements to the case management system.

Practitioners also made suggestions for legislative improvements, which were out of scope for the current review, but have been recorded to inform the full legislative review in 2024.

Future considerations

This review was conducted during the health sector reform. On 6 March 2023 the operational service components of assisted dying were transferred to Te Whatu Ora - Health New Zealand. Workforce and key stakeholders were kept informed throughout the transfer process.

The Ministry is responding to the suggested opportunity for improvement of the regulatory technology/case management system, with improvements scheduled for release later in 2023. These improvements have been made in consultation with practitioners and other system users.

In response to the review opportunities for improvement Te Whatu Ora has scheduled updates to the public information as part of their work programme in 2024. Practitioner support has also been increased with regular peer network sessions for practitioners scheduled throughout 2023.

Regulation of the assisted dying service remains with Manatū Hauora - Ministry of Health. Manatū Hauora will continue to work collaboratively with Te Whatu Ora, Te Aka Whai Ora - Māori Health Authority and Whaikaha - Ministry of Disabled People to action opportunities outlined in the review.