Table 3 Research Priorities – Survey Rating Scores & Additional Qualitative Input from participants

Overarching context of the health system

Research was necessary in relation to the contextual factors, namely the stretched health system, the inequities that already exist, and the relationship between hospice/palliative care and AD.

2. The relation with and impact of assisted dying on palliative care (M = 83.4, SD = 21.8)

4. Views of people from disability communities towards assisted dying (M = 80.7, SD = 23.1)

7. Māori engagement with assisted dying (M = 79.6, SD = 23.5)

10. Impact on structurally disadvantaged groups (M = 78.3, SD = 24.2)

• What effect has AD had on attitudes towards death and dying and openness towards discussing dying over time for both health professionals and the public?

• Is bias affecting equitable access to AD for various groups?

• Whether people requesting AD had access to high-quality palliative care, was it routinely being offered to those not accessing it, the effectiveness of palliative care to relieve their suffering and how often accessing palliative care relieved the desire for AD?

“Understanding why people choose the path or [sic] assisted dying is imperative. Separating End of Life Care services from Assisted Dying and understanding what both have to offer is imperative. An example of this, is that some people who choose assisted dying are afraid of suffering but have no true understanding of how the palliative care process reduces suffering at the end of life.”

Experiences at the bedside

Understanding the experiences of patients and families receiving AD services and HCPs, either providing AD or caring for people receiving AD (i.e. non-providers)

3. Experiences of people and whānau/family choosing and practitioners providing assisted dying (M = 82.8, SD = 20.7)

8. Experiences of people and providers when assisted dying applications are declined (M = 79.2, SD = 22.4)

15. Experiences of non-provider (e.g., admin, cleaning) staff where assisted dying is being provided (M = 62.4, SD = 26.8)

• What communication skills are required to respond to AD requests for all HCPs?

• How to manage the AD process sensitively, especially when a person was found ineligible and how best to support patients and to hand back over care to their usual clinicians.

• What the legal prohibition on raising AD means for clinical practice as well as patients being informed about their end-of-life options?

• What effect is confidentiality (and ‘secrecy’) having on staff across all sectors?

• What are the views of doctors’ post-legalisation, in particular oncologists who have not been surveyed (since most AD patients have cancer)?

• What is the role of doctors’ religion in their responses to AD?

• Is AD having any impact on staff burnout?

• How to provide culturally competent care?

“Investigating the beliefs, attitudes, perspectives and behaviours of health professionals within health services (primary, tertiary health care and specialist health care) towards treating patients/whānau who has an AD in place (poor responses by health professionals can minimise and disrespect the decision making and treatment of the AD person/whānau). Do strong negative attitudes affect the perceptions of health professionals and compromise the treatment the AD person and whānau receive?”

Medico-legal issues

Stakeholders discussed the importance of researching how the legal criteria for eligibility are/should be applied.

1. Effectiveness of the safeguards in the Act to protect people (M = 84.5, SD = 23.7

5. Barriers to individuals exercising their legal right to request assisted dying (M = 80.1, SD = 21.3)

11. Health practitioners’ (including assisted dying providers) interpretation of the eligibility criteria outlined in the End of Life Choice Act (M = 77.6, SD = 25.1

• How are AD providers interpreting the End of Life Choice Act eligibility criteria?

• Who is qualified and what training is necessary/sufficient/adequate for assessing capacity?

• What clinical advice and clinical tools do clinicians use to assess eligibility/prognosis?

• What processes are/should be in place where a patient’s primary team disagree with the AMP/IMP assessment?

• How is/should “unbearable suffering” be determined/defined?

• Tension between respect for the confidentiality and privacy of the patient with the desirability of ensuring the extended/primary care team are aware of the patients end of life plans (this may be less of an issue if/when AD becomes more normalised).

• What processes should be in place for disagreeing with eligibility assessments e.g. raising concerns, making complaints.

• To what extent should prognostication be ‘narrow’ or ‘holistic’ – what approaches to “likely to die” should be adopted?

• What should the law be and how do we decide?

“Capacity assessment is a difficult area requiring expert assessment, and I don’t think we know what the capabilities of those providing assisted dying are in this area, so research into how and when practitioners are assessing capacity would be important”

“Aspects where law is deficient:

a) inability to use Act due to lack of process for advance directives e.g. dementia, and patients who lose their ability to think at the last minute due to their advancing disease

b) the place of nurse practitioners in the process - nurses are integral to the process and more power and representation should be given to the nurse practitioners who are involved”

‘A different kind of dying’

This theme yielded an array of research questions focused on the impact of AD being a different type of death.

3. Experiences of people and whānau/family choosing and practitioners providing assisted dying (M = 82.8, SD = 20.7)

6. Tikanga Māori (custom) and kawa (protocols) and assisted dying (M = 79.7, SD = 24.2)

14. Stigmatisation of those involved in the provision of and use of assisted dying services (M = 70.1, SD = 28.1)

15. Experiences of non-provider (e.g., admin, cleaning) staff where assisted dying is being provided (M = 62.4, SD = 26.8)

• How does an AD differ from an “ordinary” or non-assisted death? How is it similar?

• What is the impact of secrecy on staff/carers?

• What role does stigma play in ‘othering’ AD?

• What counts as a good death?

• What impact does AD have on the bereavement experience?

• How do providers rationalise and navigate being an AD provider? How do providers manage their role i.e. navigate

personal and family dynamics?

• What are the experiences of providers of this different kind of dying, how are they perceived by others and is there any impact on service provision?

• How have perspectives about AD shifted now that it is legal?

• How does grief differ and how is it similar for AD?

• How to provide bereavement support for a patient’s family?

"The effect of assisted dying on those left behind, who had no prior knowledge that assisted dying was being sought or had been actioned. How does assisted dying affect the bereavement process, with/without prior knowledge that assisted dying had been activated.”

On the day

Research under this theme pertained to expectations of providers, how patients were curating their deaths and the administration of drugs.

3. Experiences of people and whānau/family choosing and practitioners providing assisted dying (M = 82.8, SD = 20.7)

6. Tikanga Māori (custom) and kawa (protocols) and assisted dying (M = 79.7, SD = 24.2)

• Does the patient and family expect the AMP to act as a “celebrant” or as a “technician” or is it not important?

• Is it important that the original AMP returns for the assisted death itself, having established a ‘relationship’, or is it more important that the event occurs when and where requested by the patient and family irrespective of the operator?

• Should the AMP feel able to negotiate with the patient and family as to the timing etc or should that be considered sacrosanct?

• What new death rituals are emerging? e.g. death plans

• What was the quality of death?

• Were there any administration issues?

• Etiquette – how to speak to patient/family?

“The experiences of the family are obviously very important and perhaps research directed at giving AMPs specific guidance on how to carry out their duties on the day of death: eg drawing up the medication remote from the patient, whether a long extension line on the IV should be used so that the AMP can be away from the patient allowing family to be able to be the focus of attention, whether family want to be alone with the patient immediately after administration or whether they would prefer the “security” of the AMP’s presence for those few minutes until the patient is declared deceased, how to "do the paperwork" in a small crowded apartment surrounded by strong emotional family where one no longer really belongs. Practical suggestions that could improve the consistency of service”

Overall effectiveness of the AD system

Topics about how the AD was being implemented across the health sector and the variety of implementation models in particular in Aged Residential Care, the role of conscientious and institutional objection, workforce and training issues, and the Ministry of Health reporting data.

1. Effectiveness of the safeguards in the Act to protect people (M = 84.5, SD = 23.7)

5. Barriers to individuals exercising their legal right to request assisted dying (M = 80.1, SD = 21.3)

9. Evaluation of health practitioner and assisted dying provider training (M = 78.8, SD = 21.4)

12. Analysing Ministry of Health data on assisted dying engagement and characteristics of people using assisted dying services (M = 73.1, SD = 25.3)

13. Timeliness of service provision (M = 72.9, SD = 27.2)

• What are the access issues for Aged Residential Care (ARC) residents? Are facilities allowing deaths to occur on site, does this breach people’s rights, do living arrangements (independent villa, hospital level etc) affect this or not? How many people are having to transfer elsewhere to die and what is the effect on people and families? How to keep residents and staff safe when they don’t want to care for an AD patient? What are experiences of providers going on objecting facility? Should institutions be able to object, particularly if they receive government funding?

• What role do personal beliefs about AD play a role in how an organisation implements AD?

• What would help practitioners who are uncertain about participating decide to become a provider? What is the minimum number of providers/patients – i.e. a reasonable caseload, especially as demand increases?

• Whether access is equitable across groups, the timeliness of access, what type of palliative care AD patients were accessing, whether it was meeting their needs,

• Why did people seek AD?

• How does NZ data compare to overseas jurisdictions?

“How staff who work in organisations with a conscientious objection reconcile if they have a personal opinion that supports assisted dying?”