Exploring the early experiences of assisted dying in Aotearoa New Zealand: a qualitative study protocol

Abstract

Introduction

Increasing numbers of jurisdictions are legalising assisted dying (AD). Developing research protocols to study the experiences and outcomes of legislation is imperative. AD is a topic that, by nature of its complexity and inherent ethical issues, lends itself to qualitative research. Using the objectives of the statutory framework, this qualitative study aims to provide a robust review of the newly formed AD service in New Zealand and the extent to which it is safe, people-centred, dignity-enhancing, accessible and available equitably to all eligible people.

Methods and analysis

The research uses an appreciative inquiry design to focus on what is working well, what could be improved, what constitutes the ‘ideal’ and how to enable people to achieve that ideal. We are using online semi-structured interviews and face-to-face focus groups to explore the experiences of key stakeholders: eligible/ineligible service users; eligible/ineligible service users with impairments; families of service users; AD providers; non-providers (providers who object to AD and others who are not directly involved in providing AD but are not opposed in principle); health service leaders; and Māori community members. An estimated 110 participants will be interviewed. We will conduct thematic and regulatory analyses of data.

Ethics and dissemination

The ethical aspects of this study have been approved by the Northern A Health and Disability Ethics Committee through the full review pathway (2023 EXP 18493). To disseminate the findings, we will draft resources to support interviewee groups, to be developed with feedback from stakeholder meetings. We will submit evidence-based recommendations to inform the government review of the End of Life Choice Act 2019. Findings will be disseminated in peer-reviewed publications, conferences, webinars, media, stakeholder feedback sessions and accessible research briefings.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• This research is a large-scale qualitative study that incorporates a broad range of people who are involved in New Zealand’s assisted dying (AD) service.

• The diversity of the research team and the advisory groups provide robust review and specialised guidance to develop a sensitively designed protocol.

• A pragmatic sampling method is proving necessary due to low response numbers in AD service user cohorts and the small potential participant population size.

• Some healthcare, patient support and disability advocacy organisations have not circulated recruitment flyers limiting the diversity of the sample to date.

Introduction

Increasing numbers of jurisdictions are passing assisted dying (AD) legislation (also known as euthanasia, physician-assisted suicide, medical assistance in dying and voluntary AD). Jurisdictions such as the Netherlands, Belgium, Canada, Australia, Aotearoa New Zealand (NZ), Spain, Colombia, Austria, Germany, Italy, Portugal, Ecuador, Peru and some jurisdictions within the USA now permit some form of AD. AD is currently under consideration by legislators in other jurisdictions, for example, France, Scotland, Ireland, Isle of Man and Jersey. Given its ethical complexity, sensitively designed research to study AD is paramount.¹

Previous AD protocols helped develop this research.²,⁵ This article aims to describe a protocol to study the End of Life Choice Act 2019 (the Act) which came into force in 2021 in NZ, transforming the landscape of end-of-life care services.⁶ It constitutes one of the most significant changes to NZ health law and practice in decades.⁷ The Act legalises AD for persons assessed by at least two doctors as meeting all statutory eligibility criteria (table 1).

Table 1. The End of Life Choice Act (2019).

Eligibility criteria

Procedural safeguards

Aged 18 years or over; A citizen or permanent resident of NZ; Suffering from a terminal illness that is likely to end their life within 6 months; In an advanced state of irreversible decline in physical capability; Experiencing unbearable suffering unable to be relieved in a tolerable manner; and Competent to make an informed decision about AD.

Health practitioners are prohibited from initiating discussions or raising AD as an option with patients; Two independent eligibility assessments by doctors with the option of a third assessment by a psychiatrist of capacity; Exclusion of advanced age/mental illness/disability as the sole reason for AD; A person must be able to give consent on the day of receiving the medication; An advance directive for AD is not permitted; Enduring power of attorneys cannot consent on a person’s behalf; Health practitioners can conscientiously object, though they must tell the patient of their right to ask the ‘Support and Consultation for End of Life NZ Group’ for a provider; All forms are checked for compliance by the Registrar AD before AD medications given; The process must stop if the person is being pressured; At any point, an eligible person may defer, or rescind their decision to have AD; and The review committee reviews death reports.

ADassisted dying NZNew Zealand

The Ministry of Health and Te Whatu Ora/Health NZ (the publicly funded healthcare system), which are responsible for regulating and operationalising AD, respectively, state that the ‘service aims to be equitable and ensure people and their family/whānau are at the centre, that there are effective safeguards as set out under the law, and that the service is accessible to those who meet the eligibility criteria’ and aims to be culturally safe for Māori, the Indigenous people of NZ.^{8 9} The NZ health service and AD service are committed to meeting te Tiriti o Waitangi obligations and aspire to achieve equitable health outcomes for Māori.^{9 10} Te Tiriti o Waitangi (known in English as the Treaty of Waitangi) is the founding document of Aotearoa New Zealand, an agreement made in 1840 between representatives of the British Crown and more than 500 Māori chiefs. It resulted in the declaration of British sovereignty over NZ.¹¹ AD is a fully-funded service that is overseen by a secretariat including clinical advisors, a Registrar AD and statutory committees that hold a list of AD providers that patients can be referred to. It is crucial to understand how this new health service is working during the early stages of its implementation. Researching the experiences of various those involved in the AD system will inform healthcare policy practices and shape the provision of AD.

Previous assisted dying research

NZ research to date has focused on public attitudes towards AD, older people’s views, medical students’ views, how the public’s views change with education and facilitated debate, as well as analyses of online conversations about legislative.¹²,¹⁹ Research on health practitioners’ views demonstrates that support levels for AD vary by medical specialty.¹²²⁰,²³ Other studies discuss the role of nurses and psychiatrists in responding to AD requests and nurse practitioners’ skills in assessing eligibility.²⁴,²⁸

The reasons why people request AD are a fundamental aspect of AD research.^{29 30} Quantitative research found 9.5% of older New Zealanders with a prognosis of less than 12 months ‘want to die’.³¹,³³ This desire was influenced by depression, pain and loss of meaning in day-to-day life.³¹,³³ Interview-based research has explored the views of people approaching the end of their lives and wanting the option of AD before the Act was passed.³⁴,³⁶ AD appeals to people at the end of their lives because it offers what they consider to be a ‘good’ death, certainty and control.³⁴,³⁶ There is, however, a paucity of AD research on Māori. Extant research with Māori emphasises the importance of involving whānau (family) in decision-making and using tikanga Māori (cultural practices and customs) in any provision of AD, though there are a diverse range of preferences among Māori.^{37 38} Current research on these factors is needed because the above research was conducted before AD became lawful in NZ.

Across the healthcare system, there was various uptake of the AD e-learning modules both before and after AD was implemented.^{39 40} Three surveys of different health professions found most had a ‘moderate’ to ‘good’ understanding of the Act,^{36 37} where understanding was higher among those who had completed the AD e-learning modules.³⁹ The extent to which health and social care organisations integrated AD into their services has also varied.⁴¹ Within the first year of practice, AD practitioners experienced a steep learning curve in understanding the AD advisory and regulatory platform (portal) as well as interpreting the Act.⁴¹ Critiques of the legislation are emerging and they include practitioners’ interpretation of the Act; the scope of eligibility/ineligibility; and safeguards.^{7 42 43} As such, qualitative research is necessary to illuminate the context and nuances of people’s experiences of this complex legislation.

Aims and objectives

The research aims to provide a robust review of the AD service in NZ to determine the extent to which it is safe, people-centred, mana-enhancing (dignity), accessible and equitable to all eligible people. The specific objectives are:

1. To explore the experiences of various stakeholders involved in AD;

2. To produce a comprehensive, evidence-based submission for the statutory review of the End of Life Choice Act by the Ministry of Health;

3. To co-produce resources in consultation with stakeholders to support the provision of AD;

4. To disseminate the findings and resulting resources widely to stakeholders, that is, participants, government, health services, community organisations and the public in both academic and non-academic publications;

5. To identify key areas of AD that require further research to advance the stated goals of the AD system—that is, safety, accessibility, people-centred, culturally safe, effective and equitable service provision.

Research questions

Our research is guided by the following questions:

1. What are the experiences of people involved in the AD process?

2. How will Māori community members and associated marae (community buildings and grounds), hapū (subtribe/clan) and whānau (family) respond if members wish to access AD services? (Marae are the traditional focal point of Māori communities throughout Aotearoa New Zealand, a complex of buildings and grounds belonging to a particular iwi (tribe), hapū (sub-tribe) or whānau (family). Their relevance in relation to AD includes (but is not confined to) the housing of urupā/cemeteries on marae grounds, and whether AD affects eligibility for burial there, in accordance with marae protocol).

3. What is the ‘ideal’ safe, accessible and equitable AD service from service users’ and providers’ perspectives?

4. How could the Act and related policies be improved or revised to optimally regulate access, safety and equity of the AD service?

Methods and analysis

Research team

We are a disciplinary and culturally diverse team with a range of views on AD. We are researchers and researcher-clinicians working in the fields of law, ethics, psychiatry, hospice and palliative care, nursing, public health, primary care, Indigenous studies, social sciences and psychology scholarship. We are guided by academic, Māori, disability and clinical advisors. The team maintains a register of interests and developed guiding principles.

Study design

This study was designed with stakeholders including some members of the public.⁴⁰ It builds on stakeholder agenda-setting research.⁴⁰ This qualitative study uses semi-structured interviews and focus groups to elicit the experiences of 110 participants who have been involved with the AD service in some capacity or who are considering community responses to AD.

Study framework

This research is informed by an innovative participatory methodology using an appreciative inquiry design.^{44 45} The iterative ‘discovery, dream, design, and destiny’ (4D) research cycle encourages positive learning, builds on ideas for change from those involved, and focuses on the interactions between individuals, groups and systems.⁴⁶,⁴⁸ Appreciative inquiries examine what is working well; what could be improved; what constitutes the ‘ideal’; and how to empower, learn and adjust the system for those involved to sustain what is working well and work towards the ideal. This is an important framework for our study given the risk of stigmatisation for those who support, provide and/or make use of AD services.⁴⁹

Sample selection

Our key stakeholder groups and target numbers of participants are: individuals deemed eligible for AD (n=15); individuals deemed ineligible (n=10); eligible/ineligible service users with impairments or their families (n=15); bereaved families (includes families of those who died before AD was provided) (n=20); AD providers (n=15); health professionals caring for someone receiving AD (both providers who object to AD and others who are not directly involved in providing AD but are not opposed in principle) (n=10); leaders from relevant health services (n=10) (eg, hospices, aged residential care). We are holding focus groups in years 1–3 with representatives from Māori communities (n=15) to identify Indigenous community perspectives related to AD. These stakeholder groups have been selected to ensure that a range of different perspectives and experiences are included and based on their ability to provide data to answer the research questions. While we are trying to recruit a varied sample through different strategies, described below, we have taken a pragmatic approach to the sample due to the limited number of potential participants in most groups. We are purposively sampling people with diverse impairments to ensure their needs are being considered adequately. We are using information power to guide recruitment, based on the principle that ‘the more information the sample holds, relevant for the actual study, the lower number of participants is needed’, rather than saturation or enumerable instances of a phenomenon.⁵⁰

Study dates

The 3-year project began in July 2023. Data collection began in November 2023 and is ongoing.

Recruitment

In November 2023 a media release was circulated through the Victoria University of Wellington communications team and resulted in news articles in regional and national news outlets. Recruitment via organisations involves close consideration of how the study is framed and relationship building. We are continuing to approach relevant healthcare organisations, community groups and professional bodies to circulate the advertisement to their networks and via social media (including but not limited to Voluntary Assisted Dying Australia and NZ practitioners network, Nurse Practitioners NZ, Hospice NZ, Diversity NZ, Palliative Care Nurses NZ, End-of-Life Choice Society, patients and carer support groups, for example, Ovarian Cancer NZ Support Group, Carer NZ, Alzheimer’s NZ, Disabled people supporting End-of-Life Choice Facebook group). The AD service is circulating our recruitment flyers with their AD providers’ newsletter and to selected service users. We are supplementing recruitment with snowballing from participants and purposive sampling when necessary. Māori team members are recruiting community participants through Māori networks, drawing on established connections.

Semi-structured interviews

The interviewers have extensive experience interviewing people about AD and the team includes people with counselling, disability law, kaupapa Māori research (Māori philosophy-driven research) and nursing backgrounds. Two researchers are conducting each interview. Informed by appreciative inquiry, interviews are participant-led in terms of discussing the salient issues of their experiences with AD. The lead interviewer enquires about what is working well, what would facilitate what they see as the ‘ideal’ experience, less-than-ideal experiences and their views on safety, access and equity. The second interviewer asks supplementary questions as relevant. Interview guides are available as online supplemental material. All interviews, except the focus groups, are conducted online or by phone to enable national coverage unless their impairment (eg, hearing) requires an in-person interview. All participants receive a supermarket voucher as a koha (gift; contribution) to recognise their expertise, experiences and time.

Data analysis

We will analyse each interview using thematic analysis, across the stakeholder groups and across the whole data set.⁵¹ We will use NVivo, a software for managing qualitative data. Analysis of the Māori focus groups will be led by Māori team members and advisors in keeping with data sovereignty and mana motuhake (self-determination) for Māori.⁵² Researchers will be sent two transcripts to code using an initial coding framework developed by the two team members who conducted the majority of the interviews as well as noting additional themes. These will be discussed at in-person 2-day meeting and incorporated into the coding framework. We will also conduct a regulatory analysis to identify issues and areas for improvement in the provision and oversight of AD services.⁷ The regulatory method identifies the stated policy goals through a synthesis of public statements/documents (including the Act) and then benchmarks against those policy goals and empirical data.^{7 53}

To bring the thematic and regulatory analyses together, we will consider:

• What is working well with the AD service and how do users think it could function even better?

• How can AD service providers be supported to improve the service they provide?

• How well is the AD service facilitating access to AD for eligible patients while safeguarding the vulnerable?

• How could the Act be amended to balance the needs of different groups?

Trustworthiness and rigour of the data analyses will be enhanced by sharing analysis across the team. All team members will engage in ongoing, critical conversations about the data. Our team has a variety of views on AD and has deep expertise in reflexive research techniques, and throughout the project, we will continue to examine our own judgements, practices and belief systems.⁵¹ Stakeholder engagement will also help enhance the trustworthiness and richness of the analysis.⁴⁵

Patient and public involvement

We will produce key resources for different stakeholder groups in consultation with them. The content for these resources will be based on what participants said would be most helpful to them during the AD process to achieve the ‘ideal’. After drafting the resource content, we will hold meetings with stakeholders to seek their feedback to further refine the resources. We will seek feedback on the most appropriate format (eg, written, short film) and ask where they would like to see such information made available. We will invite all participants to the relevant in-person meetings to take place at several locations across NZ and online meetings. Once finalised, we will work with a designer and video producers to create evidence-based, best practice resources.

Ethics and dissemination

Ethics and informed consent

This study is designed to adhere to the Declaration of Helsinki. The ethical aspects of this study have been approved by the Northern A Health and Disability Ethics Committee through the full review pathway (2023 EXP 18493). The participant information sheet was translated into NZ Sign Language video, E-text for screen reader and Easy Read to facilitate broader participation. After they receive the participant information sheet, all participants give informed electronic consent before they schedule an interview. Participant questions are answered, and verbal consent is sought again before commencing the interview.

Safety protocol

Research participants are invited to bring a support person. The length of the interviews, appropriateness and effect of questions on participants are considered throughout the interview. Participants are encouraged to pause or postpone the interviews if they are feeling distressed or tired. To close the interview, the interviewers remind participants of the list of support services on the participant information sheet should they need them. The lead interviewer contacts participants via their preferred method the following day for a welfare check. The Māori focus groups are led by Māori team members who will follow the participants’ tikanga (cultural practices and customs) (eg, prayer, singing). If serious distress is caused, free counselling will be offered as necessary. Interviewers debrief together after interviews and professional support is available if needed.

Some people we are interviewing may be at risk of coercion or pressure to request AD. If we are concerned about the risk of harm to a participant or to others, we will take steps to explore the situation. In the first instance, we will raise it with the participant. If we have reasonable grounds, we will discuss them with the principal investigator and report our concerns to the AD Registrar at the Ministry of Health, as per the End of Life Choice Act requires AD providers to. The benefit of reporting to the Registrar first is that once a red flag is raised about coercion, then it means that any further engagement by that person with the AD service would be subject to that red flag—the Registrar would be on notice about the concern even if it came from a researcher. If they are in immediate danger, then we will consider going directly to the police.

If a participant raises the subject of suicide or becomes significantly distressed, the interviewer will decide whether they ask the P4 suicidality screening tool at that moment or at the conclusion of the interview as seems appropriate.⁵⁴ Any use of the P4 suicidality screening tool with participants will be recorded. The interviewer will then contact the psychiatrist on the research team to discuss the case and determine how to proceed.

Confidentiality

Confidentiality is also a potential issue as AD is still polarising. All attempts will be made to remove any identifying details, such as names and places, after transcription. Interviews are transcribed by the automated function in Microsoft Teams, stored on a password-protected university system and corrected by a researcher. Transcripts will be coded with a participant identification number and pseudonym.

Dissemination activities

The regulatory review and the empirical qualitative data will be synthesised into recommendations for the government-mandated 3-year review of the Act in November 2024. Our analysis will identify operational issues and determine whether any amendments to the Act are necessary or desirable. We will publish in journals, opting for open access where possible. We will disseminate the research at national and international conferences, as well as on public impact websites (eg, The Conversation). To ensure rapid dissemination of our work to inform research, education and policy initiatives, we will provide regular project updates and key findings on the AD Research Network website (https://www.wgtn.ac.nz/assisted-dying). We will offer to give local presentations (eg, at health practitioners’ conferences, grand rounds, Health Quality & Safety Commission, Health and Disability Commissioner) and approach relevant organisations to share our resources with their members. We will host a webinar series to share the findings with stakeholder groups, opportunities for supporting AD service improvements, and the co-developed resources. Webinars will be posted on the project website. We will also host a hybrid conference that will focus on service delivery. The conference will present evidence-based research about AD in NZ and build research links across the country.

Discussion

This research project will be the first large-scale study of the experiences of the AD service in NZ. The findings will provide essential information about AD to the NZ public, policymakers, and health service leaders. Transparent reporting of the AD service’s operation and the experiences of those directly involved with AD will foster trust in the health system, which is known to influence health outcomes.⁵⁵ This is especially important in NZ given the obligations to the Māori under te Tiriti o Waitangi to protect tino rangatiratanga (self-determination).^{9 10} The Māori community member focus groups will produce valuable information to inform the AD pathway for some Māori. Given the substantial evidence of conscious and unconscious bias within the healthcare system and its impact on structurally disadvantaged groups, researching equity of access to AD is imperative. Equitable access includes ensuring the service accounts for the accessibility needs of people with various impairments, balancing the rights of people to be informed of the service while safeguarding those who do not wish to, a free and culturally safe service and considering the role of health and digital literacy. How these factors should be translated into AD law is a unique focus of this research.

International literature identifies various communication, supportive and informational needs in the assessment of eligibility and the lead up to, and after, an assisted death occurs for those involved.⁴⁹⁵⁶,⁶⁴ Collectively, the resources that will be developed in this research will go some way toward meeting these needs. The resources, particularly the review, are significant opportunities to improve the Act, regarding safety, access and equity for all New Zealanders and may be relevant to other jurisdictions.

Challenges

The main challenge we are encountering is recruiting people who are using the AD service because they are very ill, have limited time and energy and are a small population to draw from. These are long-standing issues with other international AD interview studies; using family members as proxies for patients has been necessary.⁶⁴,⁶⁶ We have been fortunate to have the AD service circulate our flyer to selected service users. However, recruiting for an ethically complex area has been met with some gatekeeping by other health and disability organisations, where organisations have considered circulating the flyer inappropriate or irrelevant, to their members. This is limiting the diversity of our sample beyond those who receive the invite but do not wish to participate. Recruiting AD providers is slower than expected; possibly because there have been recent local studies,^{40 41} and they may feel they have already participated in similar research. While we are prepared for possible challenges to ensure the well-being of participants, safety protocols have not been needed so far. The toll of the interviewing is being managed by sharing the lead interviewer role between the interviewing team, debriefing and spacing of interviews.

In conclusion, our goal is to design robust and sensitive research that looks after participants’ well-being and harnesses their stories to support others in similar circumstances. We hope this protocol will assist others in doing the same. Further work is needed to understand the barriers that Māori individuals face in participating in AD research projects; their participation is critical to ensuring the ethical conduct and cultural appropriateness of such studies and ensuing service improvements. This project will examine the equity of access to AD for all people who call NZ home to strengthen the evidence base for decision-making about the Act.^{1 67} The planned knowledge translation activities will ensure our research has maximum impact across the health system and the associated regulation.