Kaitiakitanga Assisted Dying Pathway

Hinauri | Phase 1 Summary

The Waerea Study Findings

Whānau Kaitiakitanga: Family Guardianship after a person with an incurable terminal illness decides they want an assisted death

The Hinauri phase refers to the passage of time following a terminal diagnosis when someone considers assisted dying and before they have the assisted dying procedure. Whānau are kaitiaki (guardians) who provide care, protection, advocacy and support.

Assisted dying awareness in Māori communities

Assisted dying is generally not being openly discussed in Māori communities:

  • Most whānau said assisted dying was not being discussed in their communities and they would like it to be. This is needed to reduce assisted dying discrimination and to and support whānau with assisted dying support within their communities.

Recommendations from whānau for assisted dying services

Whānau want people to talk to about assisted dying within their local communities and within different healthcare settings where they live to support assisted dying enquiries and application process:

  • Wānanga (places of higher learning) or hui (meetings) to discuss assisted dying in a safe environment are needed:

  • Community discussions would help to increase assisted dying awareness and understanding among whānau, iwi and hapū and could help reduce fear, negative judgement and discrimination.

  1. People who had an incurable terminal illness who chose assisted dying were often very private and independent people who liked to be in control.
  2. They drew from their own mana (status/prestige) strengthened by their whakapapa (genealogy) to travel this pathway.
    1. They used their mana motuhake (autonomy/ independence) to choose how they wanted to die.
  3. Their whānau described the person who had chosen to have an assisted death as, “tough, stoic, independent, staunch, proud, strong, resilient and brave.”
    1. Whānau felt proud of their deceased relative who had an assisted death and described them as “trail blazers” and “movers and shakers” who opened the door for others in their whānau to choose assisted dying; a “dignified” end of life option to cease pain and suffering.
  1. The person who had an incurable terminal illness independently decided to use the End of Life Choice Act (2019).
    1. Most people who had an incurable terminal illness voted for the End of Life Choice Act (2019), or they had read about the Act in the paper or seen it on the television.
    2. They often spoke to a health professional about their wish to have an assisted death before they spoke to their whānau.
  2. The person with an incurable terminal illness often shared the information with only one or two trusted whānau members at first. These people walked alongside them and became their assisted dying kaitiaki (guardians).
  3. Whānau were often involved in the assisted dying information gathering process; as advocates they often liaised with health professionals and the assisted dying doctors or the Assisted Dying Service on the ill person’s behalf.
    1. Whānau kaitiaki were in a unique position because they attended the assessments and they understood the process.
    2. Whānau kaitiaki shared this information with other whānau members.
  1. The person with a terminal illness often sought the support and blessing of their whānau to have the assisted death:
    1. They loved their whānau and did not want to burden them.
    2. They wanted the support of their whānau who will be with them when they die and care for them after death; the family will be responsible for burying or cremating them.
  2. Kaitiaki had an important responsibility to support the person with a terminal illness to inform other whānau members about the ill person’s decision to have an assisted death.
  3. Kaitiaki often acted as facilitators at whānau hui (meeting).
    1. Their role was to keep the person with a terminal illness safe and then ensure the entire whānau was safe.
      1. Sometimes this meant preparing the ill person or specific people in the whānau before the hui (meeting).
  1. The kaitiaki’s role was to guide and protect everyone during discussions at hui.
    1. Kaitiaki enabled their whānau to understand assisted dying.
      1. They explained the assisted dying process and terminology.
      2. They explained the reasons why the terminally ill person wanted to have an assisted death.
        1. This enabled whānau to have insight, understanding and empathy about the effects of the ill person’s illness (pain, suffering, and indignity, for example).
        2. Whānau had the opportunity to consider “putting yourself in their shoes.”
      3. The kaitiaki allowed whānau to express their thoughts, emotions and grief and they answered their questions.
  2. Hui and decision making could involve many hui (meetings) and whānau members.
    1. Korerorero (discussions) could take place over many days in different settings with different people and could include assisted dying doctors and health professionals.
  1. Whānau honoured the person who wanted an assisted death by supporting them. Whānau placed the person at the centre of their care They did everything they could to meet their needs.
  2. Whānau prioritised the person’s mana motuhake to have an assisted death.
  3. Whānau understood the level of pain and suffering the person was in and this helped them to accept their decision.
    1. Whānau believed it was the person’s right to choose an assisted death; “the person’s voice is the only voice that should matter.”
  1. It was not always easy for whānau to support their whanaunga (relative’s) decision to have an assisted death.
    1. Many whānau felt uncomfortable about assisted dying; they experienced confusion or were in two minds about it. They wanted to support their relative but had mixed feelings about assisted dying.
      1. They prioritised caring for their relative and set aside their own feelings; they felt there was no support to help them.
  1. The Waerea study findings identified five main reasons Māori adults who had an incurable terminal diagnosis wanted an assisted death:
    1. 1. Fulfilled the person’s wish for a dignified death.
    2. 2. Helped the person maintain or preserve their mana (status, power, prestige).
    3. 3. Reduced the person’s fear of anticipated pain and suffering.
    4. 4. Helped the person take back control.
    5. 5. Helped the person feel less of a burden.
  1. People who had an incurable terminal illness wanted to use their mana motuhake to have a dignified death because they had seen others in their whānau suffer from pain and other symptoms at the end of life and they had observed them having undignified deaths.
  1. People who had an incurable terminal illness sought an assisted death to maintain their mana (status, power, prestige).
  2. Mana was diminished when physical appearance changed; people wanted to die while they were still fully physically recognisable.
  3. Mana was diminished when people lost cognitive function (their mind was not as strong and clear as it used to be); people wanted full mental capacity and to die peacefully.
  1. Knowing they could have an assisted death helped to lift the burden of anticipated suffering from people who had an incurable terminal illness.
    1. They anticipated (feared) their end of life would be full of pain and suffering.
  2. People anticipated their condition would become worse; they anticipated physical immobility and incapacitation (would not have control of their physical functioning)
    1. Anticipated pain and suffering was associated with specific illnesses (different forms of cancer, motor neuron disease, stroke, for example).
  3. People with incurable terminal illnesses believed they did not have to die in pain and suffer any longer because they could have an assisted death before their condition became worse.
  1. When everything else was failing them, choosing to have an assisted death was one thing the person who had an incurable terminal illness could control.
    1. They wanted to have control over the timing of their death to ensure they died with dignity (did not lose their mana)
    2. They wanted to have control over not being able to walk or talk or have their physical appearance change too much.
      1. They wanted to control the amount of suffering and pain they would endure.
      2. They wanted to ensure they would not have an undignified death.
  2. Some whānau also felt they had a sense of control over what was happening because the person had chosen an assisted death and they knew what was going to happen to them at the end of their life.
  1. Some people who had an incurable terminal illness wanted to protect their whānau from the burden of end of life care.
    1. Whānau did not agree with their whanaunga (relative) that they were a burden – they felt that caring for someone at end of life was an honour and a privilege.
  2. People who had an incurable terminal illness wanted to die with agency, mana and dignity:
    1. They wanted to protect the memories their whānau would have of them
    2. They did not want their whānau to think of them as “powerless” or having less mana.
  1. Whānau supported their loved person to do whatever they needed to do to maintain hope at the end of life and to try anything to extend their lives.
    1. Whānau supported the person’s palliative care journey, they helped them to seek and use curative treatments, access and attend clinical treatments and try different forms of healing (rongoā).
    2. Manaakitanga (care) and kaitiakitanga (guardianship) included whānau providing end of life care, often at home, until their assisted death.

Most people who were terminal and used the End of Life Choice Act (2019) had voted for assisted dying or they knew it existed:

  • Most people spoke to a health professional before telling their whānau.

  • Some health professionals provided helpful information however, others just referred the person to the Assisted Dying Service (provided a business card with a contact number for the Assisted Dying Service).

Whānau advocated for the terminally ill person by searching for assisted dying information on the Ministry of Health’s Assisted Dying Service website:

  • They conducted internet searches and used their whānau networks to find the right person to speak to about assisted dying; They also independently spoke to health professionals.

  • Not everyone knew who to talk to or how to find assisted dying information:

  • Most whānau did not realise there was an Assisted Dying Service. Whānau often did not understand the assisted dying process. For example, receiving an information pack from the assisted dying service does not mean someone has been accepted for assisted dying.

  • In the early phase of the Act’s implementation not all health professionals knew the referral process causing crucial delays.

  • Some whānau mistakenly thought it was only their GP who could refer people to the Assisted Dying Service.

Recommendations from whānau for assisted dying services

  • More public health education is needed for whānau to have direct, seamless access to information about assisted dying and how to access the Assisted Dying Service.

  • More training and education are needed for health professionals and allied staff to be able to confidently discuss assisted dying with whānau, provide accurate information and direct them to the Assisted Dying Service.

  • Most people who planned on having an assisted death asked their whānau to keep their decision private:

    • Whānau willingly prioritised protecting their family member by not sharing news of the assisted death too widely.

  • Whānau appreciated assisted dying Attending Medical Practitioners and Attending Nurse Practitioners) informing them they could be exposed to discrimination from people who do not support the EoLC Act (2019).

  • Whānau often felt conflicted about assisted dying when someone wanted to use the End of Life Choice Act (regardless of whether they voted or did not vote for the Act). Whānau felt ambivalent about assisted dying (confused or in two minds about it):

    • The desire of whānau was to uphold the mana motuhake (autonomy/independence) of the person who wanted an assisted death.

    • Whānau put aside their own confusion or discomfort to prioritise the terminally ill person’s wish.

  • Most whānau had good support from their GPs, palliative care teams (provided by hospices and hospitals) however, they often did not tell their health providers they were going to have an assisted death.

  • Some people reduced the amount of palliative care support they were entitled to because they feared health professionals would judge them.

Recommendations from whānau for assisted dying services

  • Whānau could benefit from completing the Te Oro Ngakau Nui tool (Moeke-Maxwell, et. al, 2026), located on this website to explore their inner views, feelings, thoughts, beliefs and desires about assisted dying. They could do this individually or as a whānau to see how comfortable everyone feels about assisted dying.

  • Whānau can discuss the needs of each person and how to look after everyone travelling on the Kaitiakitanga Assisted Dying Pathway; for example, some people may feel comfortable supporting the assisted dying assessment process, but they may not feel comfortable attending the assisted dying procedure.

Whānau told us that assisted dying was “new, strange, weird, different and surreal;” it was challenging to discuss assisted dying with whānau. Whānau reported how they informed other family members about assisted dying:

  • People thought carefully about who they would tell; often it was only immediate whānau who were told.

  • Special consideration was given when telling whanaunga (relatives) who had mental health problems and people the terminally ill person thought could be judgemental (or try and talk them out of having an assisted death) as well as tamariki (children) and rangatahi (youth).

  • Whānau used kanohi-ki-te-kanohi hui (face-to-face meetings) and online hui to discuss assisted dying; there could be many hui held at different times with different whānau members. Hui could include health professionals, assisted dying attending medical practitioners and funeral directors.

Recommendations from whānau for assisted dying services

  • Assisted dying is a new and different way of dying. The person who wants an assisted death and their kaitiaki whānau (family guardians) will need to think carefully whether they openly share the news of the assisted death or tell only specific people in their whānau, hapū and iwi:

    • Who will we tell?

    • When will we tell them?

    • How will we tell them?

    • Why will we tell these people?

    • Where will we tell them?

    • Who will tell them?

    • What exactly will we tell them?

  • Holding whānau hui to discuss assisted dying early on can be helpful. Having transparency (everyone knowing about the assisted dying process and procedure) can help whānau plan and prepare for what lies ahead.

  • During hui whānau can ask health professionals and assisted dying attending medical practitioners questions they have about assisted dying. No question is a silly question.

  • Knowing when they were going to die gave people who wanted to use the End of Life Choice Act (2019) a sense of relief; knowing the dying date helped them and their whānau plan and prepare for assisted dying and tangihanga (funeral customs).

  • Knowing the date someone was going to die placed a huge emotional burden on grief stricken whānau (i.e. they were already grieving knowing the person was going to die from a terminal illness and they learn the person will die even sooner from an assisted death).

  • Some whānau felt responsible that they were assisting the person to die before their life ended naturally; many felt guilty about this.

  • Many whānau commented “Māori have always ‘assisted’ people to die” (gave permission to turn off life support, for example).

  • Very few people who had a terminal illness and their whānau were offered counselling or psychosocial support during Hinauri – Phase 1, on the Kaitiakitanga Pathway:

      • Only one person with a terminal illness benefited from counselling support at this phase.

Recommendations from whānau for assisted dying services

  • After being accepted for an assisted death the person and their whānau can use the time before the procedure to plan and prepare for the dying day (gathering together to say ‘goodbye’, for example); this is a time whānau can reflect on what tikanga they will need and who they will call on for support if needed.

  • Whānau can contact kaumātua (elders), marae (ancestral gathering place), urupā (cemetery caretakers) and funeral directors to plan the tangihanga in advance.

  • Assisted dying is a new and different way of dying and whānau want people to support them who understand what they are going through. Training and education are needed to support health professionals (loss and grief counsellors, spiritual leaders, rongoā practitioners, for example) to support grieving whānau who have had an assisted death experience.

Understanding the End of Life Act’s (2019) policy restrictions, safeguards and barriers:

  • Whānau identified a lack of support from health professionals to assist in their understanding of the assisted dying criteria, safeguards, clinical process and procedure. This was needed to make an informed decision about assisted dying.

  • Many whānau were unaware that the EoLC Act’s safeguard against coercion means that health professionals cannot raise the subject or provide information about assisted dying unless the person or whānau enquires about it first:

  • The safeguard against coercion also means assisted dying assessments focused on the person wanting an assisted death (their decision); whānau could feel excluded during the assisted dying assessment process.

  • Whānau were surprised they could not be the person’s proxy or ‘voice’ if the ill person could not consent on the day of the scheduled assisted dying procedure.

  • Some whānau felt the assessment period was too long (in the early stages it could take 4-6 weeks). This timeframe has since been reduced.

  • Some whānau saw unfairness in the EoLC Act because it is the assisted dying attending medical practitioner and independent medical practitioner who determine the level of suffering someone has at end of life and not the person experiencing unbearable suffering:

    • If a third assessment is required by a psychiatrist, they will determine the person’s psychological competency.

Recommendations from whānau for assisted dying services

  • More training and education are needed to support health professionals and allied staff to be equipped to effectively discuss assisted dying with whānau and to clarify the assisted dying criteria and safeguards in the EoLC Act.

  • More health professionals and spiritual leaders (Chaplains, tohunga, kai rongoā) are needed to confidently support whānau discussions about assisted dying. They are not required to promote assisted dying but rather, provide whānau with accurate information so people can make their own decisions.

Not every person seeking an assisted death was aware of the strict assisted dying criteria:

  • If the person applying for an assisted death was expected to live for more than six months (i.e. meaning they were not likely to die within the next six months) they were declined an assisted death. This caused huge mamae (emotional pain), disappointment and distress for applicants and their whānau.

Recommendations from whānau for assisted dying services

  • To avoid disappointment (not meeting the strict criteria for an assisted death) whānau need to understand the assisted dying criteria to begin with.

  • Whānau require support from health professionals to understand what the implications of each of the criteria and safeguards mean:

    • For example, someone who has dementia will not meet the assisted dying criteria; someone who has a terminal illness but is likely to live longer than six months will not meet the criteria. If someone is old and frail but they do not have a terminal diagnosis they will not meet the criteria.

    • To avoid people being disappointed and distressed when they are declined an assisted death (they are likely to live longer than six months, for example), whānau need to have a thorough understanding of the EoLC Act’s criteria and safeguards before applying for an assisted death.

  • Choosing the dying date was straightforward for most people however, some people experienced difficulty choosing a dying date because it clashed with remarkable events, such as anniversaries or birthdays.

  • When someone had chosen their assisted dying procedure date and changed their mind about the date (pushed it back) because they felt well, they were supported by the assisted dying attending medical practitioner (AD doctor) to find a new date.

  • The person who had a terminal illness and their whānau found it helpful to know the assisted dying date because they could plan and prepare for the day of the assisted dying procedure and tangihanga (meeting with funeral directors to pre-arrange after-death care and tangihanga arrangements):

    • Knowing the assisted dying date gave whānau an opportunity to return home from overseas for the tangihanga; they had time to decide whether they wanted to attend the procedure and take time off work if required.

    • Knowing the date someone was going to die could feel like a burden to whānau (a secret they knew).

    • Choosing where to have the AD was difficult for some people (especially if they did not want to die at home); many places (hospitals, hospices, residential care facilities) do not allow assisted dying to take place there; currently, only one New Zealand hospice supportively provides a space for assisted dying.

Recommendations from whānau for assisted dying services

  • Whānau should take their time to choose the right date and place for the assisted death (avoid clashes with momentous events such as birthdays).

  • The date can be extended if someone feels well enough.

  • New Zealand needs more culturally safe places that can use for an assisted death.

Some people who delayed applying for an assisted death assessment (because they felt well), rapidly declined in their health and died before they had completed the assisted dying assessment process or they died just before the assisted dying procedure:

  • Delaying the assisted dying application process could mean someone could become too unwell to verbally consent (that is to say, ‘yes’) or physically assent (nod of head, for example) to the assisted death on the day of the procedure (lapsed into unconsciousness, for example).

Recommendations from whānau for assisted dying services

  • It is better for people to have their assisted dying assessment as early as possible as the assisted dying procedure date can be deferred (pushed back) if the person feels well enough.

People have the choice to administer lethal medication to end their lives themselves, or they can choose to have the assisted dying attending medical practitioner or nurse practitioner do it for them (a nurse can do it if a doctor is present). Most people chose to have the attending medical practitioner (or nurse practitioner) administer the medication:

  • This involves a high level of trust in the assisted dying service and the assisted dying attending medical practitioner or nurse practitioner.

Recommendations from whānau for assisted dying services

  • During their assisted dying assessment, the ill person or their whānau could ask their assisted dying attending medical practitioner what the assisted dying needle and medication look like; this may help them decide what form of medication and administration method they would like.

  • Seeing the medication and the form it will be administered (needle with medication, for example) or a photograph of it, could help to reduce any surprises on the day of the procedure. It could help to prepare the person and their whānau beforehand.

  • The person who had a terminal illness and their whānau generally had a good rapport with the assisted dying attending medical practitioner and attending nurse practitioner.

  • Most whānau felt the assisted dying assessments went smoothly once they were in touch with the Assisted Dying Service:

    • At the start of the EoLC Act’s implementation some ill people experienced referral delays because GPs and other health professionals did not understand the referral process.

  • Whānau felt the attending medical practitioners and nurse practitioners upheld the safety of the person and their whānau; they respected the person’s mana (status, power, prestige), mana motuhake (autonomy, independence) and tikanga (customs).

  • Most assisted dying attending medical practitioners provided clear (easy to understand) information about assisted dying criteria and safeguards, but some doctors used too much jargon and medical terminology.

  • The ill person and their whānau were put under pressure if the assisted dying doctor or nurse arrived late to an assisted dying assessment or the procedure.

  • Many whānau felt concern for the hauora (well-being) of the assisted dying doctors and nurses. Whānau had concerns for the clinicians’ safety on the day of the procedure:

    • Several whānau had concerns that someone in their whānau could become upset during the assisted dying procedure (become abusive towards the assisted dying doctor or nurse, for example).

    • Whānau were concerned whether the assisted dying doctors and nurses could cope emotionally with their role.

    • Whānau were concerned that the assisted dying doctors or nurses could be at risk of discrimination from people who knew about their role.

    • Whānau felt disappointed when an assisted dying doctor or nurse decided they could no longer continue in their AD role.

Recommendations from whānau for assisted dying services

  • Whānau suggested the assisted dying attending medical practitioner should have a support person or colleague with them during the procedure and also access to mental health and well-being support after the procedure.

  • Assisted dying doctors and nurses should become familiar with the location where the person is having an assessment or procedure to avoid being late.

  • Assisted dying attending doctors and nurses should carefully consider if they feel comfortable with the assisted dying role and are committed to the clinical process from start to finish as it can be disappointing for whānau when a rapport has been made and someone withdraws.

  • Some assisted dying attending medical practitioners used terminology and jargon which made the assisted dying process difficult for whānau to understand.

  • People who had hearing difficulties faced challenges understanding the assisted dying process and available options during the assisted dying assessment with the assisted dying doctor or nurse.

  • Whānau could feel whakamā (embarrassed or ashamed) when they did not understand what was being said and it made it difficult for them to ask follow-up questions.

Recommendations from whānau for assisted dying services

Assisted dying attending medical practitioners, independent medical practitioners and nurse practitioners should use plain language to speak to whānau to help them understand the assisted dying process and procedure:

  • Avoid using jargon and medical terminology.

  • Encourage whānau to ask questions.

  • People who wanted an assisted death and their whānau often experienced judgmental comments, pushback and unsupportive remarks from health professionals when they enquired about assisted dying or they mentioned they wanted an assisted death:

    • Some ill people and whānau were given little to no support or information about assisted dying after they expressed interested in assisted dying or they told a health professional they wanted to use the EoLC Act. Some experienced discrimination due to conscientious objection.

    • Some health practitioners told whānau they could not discuss assisted dying with them when they enquired about it; some were handed a card with the assisted dying service number.

  • Judgmental attitudes and behaviours from health professionals caused barriers for whānau who wanted information about assisted dying services and access to the assisted dying service and high quality palliative care.

  • Negative responses affected people’s trust in health professionals.

  • Some people reduced their palliative care because they feared judgmental comments from health professionals.