Waerea Study The Findings

Whānau experiences and perspectives of using the Assisted Dying Service & engaging with assisted dying medical practitioners

Assisted dying is not being openly discussed in Māori communities
  1. Most whānau said assisted dying (AD) was not being discussed in their communities.
  2. Whānau welcomed wānanga (place of higher learning) or hui (meetings) to discuss AD in a safe environment:
    1. This would increase AD awareness and understanding among iwi, hapū and whānau and would help to reduce fear, negative judgement and discrimination about AD.
  1. Whānau often felt conflicted about AD when someone in their family wanted to use the Act (even though they voted for it):
    1. Whānau put aside their own feelings to prioritise the terminally ill person’s wish to have an AD.
    2. The desire of whānau was to uphold the mana motuhake of the person with a terminal illness who wanted an AD.
  1. Whānau told us that AD was “new, strange, weird, different and surreal;” it was challenging to discuss AD with whānau:
    1. People thought carefully about who they would tell; often it was only immediate whānau who were told.
    2. Special consideration was given when telling whanaunga (relatives) who had mental health problems, children of any individual the terminally ill person thought would be judgemental or try to talk them out of having an AD.
    3. Whānau used kanohi-ki-te-kanohi hui (face-to-face meetings) and online hui to discuss AD; there could be many hui held at different times with different whānau members. Hui could include health professionals, AD medical practitioners and funeral directors.
  1. Most people who wanted an AD asked their whānau to keep it private:
    1. Whānau willingly prioritised protecting their family member by not sharing news of the AD too widely.
  2. AD attending medical practitioners informed whānau they may be exposed to discrimination from people who do not support the EoLC Act. Whānau appreciated this.
  1. Choosing AD gave people who wanted to use the Act a sense of relief:
    1. Knowing the dying date helped them and their whānau plan and prepare for AD and tangihanga.
  2. Knowing the date someone was going to die placed a huge emotional burden on grief stricken whānau (they were already grieving anticipating the person’s death from a terminal condition).
  3. Some whānau felt responsible that they were assisting the person to die before the life ended naturally; many felt guilty.
  1. Most people who used the End of Life Choice Act (2019) voted for AD or they knew it existed.
    1. Most people spoke to a health professional before telling their whānau
    2. Some health professionals provided helpful information however, others did not provide any information verbally; some referred the person to the Assisted Dying Service (provided a card with a contact number for the Assisted Dying Service).
  2. Whānau advocated for the terminal person by searching for AD information on the Ministry of Health’s Assisted Dying Service website:
    1. They conducted internet searches, accessed whānau networks to find someone who had information about AD; They also advocated by speaking to health professionals:
    2. Not everyone knew who to talk to or how to find information:
      1. Most whānau did not realise there was an Assisted Dying Service. People often did not understand the AD process. For example, receiving an information pack from the assisted dying service does not mean someone has been accepted for AD.
      2. In the early phase of the Act’s implementation not all health professionals knew the referral process causing crucial delays.
      3. Some whānau mistakenly thought it was only their GP who could refer people to the Assisted Dying Service.
  1. Some whānau saw unfairness in the EoLC Act because it is only the AD dying medical practitioner, independent medical practitioner who determines the level of unbearable suffering the person has and not the person who is experiencing unbearable suffering. If there is a third assessment by the psychiatrist they will determine the person’s competency.
  2. Whānau identified a lack of support from health professionals to support them understand the criteria, safeguards, process and procedure to make decisions about assisted dying.
  3. Many whānau were unaware that the safeguard against coercion in the Act means that health professionals cannot raise the subject or provide information about AD, unless the person or whānau enquires about it first:
    1. The safeguard against coercion also means AD assessments focuse on the person wanting an assisted death (their decision); whānau could feel excluded during the AD assessment process
    2. Whānau were surprised they could not be the person’s ‘voice’ if the ill person could not consent on the day of the AD procedure
    3. 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.
  1. Choosing the dying date was straightforward for most however, some people had trouble choosing a date because it clashed with significant events, anniversaries or birthdays.
  2. The person who had a terminal illness and their whānau found it helpful to know the AD date because they could plan and prepare for the day of the AD procedure and tangihanga (meeting with funeral directors to pre-arrange after-death care and tangihanga arrangements):
    1. Knowing the AD date gave whānau an opportunity to return home; they had time to decide whether they wanted to attend the AD procedure.
    2. Knowing the date someone was going to die could feel like a burden to whānau (a secret they knew).
    3. 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 AD; only one hospice supportively provides a space for AD.
    4. When the ill person changed their mind about the AD date (pushed it back) they felt supported by the attending medical practitioner.
  1. Not every person seeking an AD was aware of the strict EoLC Act’s criteria:
    1. Being declined because they did not meet the criteria caused disappointment and distress for applicants and their whānau.

Some assisted dying medical practitioners used terminology and jargon which made the AD process difficult to understand.

  1. It was challenging for hearing impaired people to understand assisted dying medical practitioners talking about the AD process and the options available.
  2. Whānau could feel whakamā (embarrassed) when they did not understand what was being said and it made it difficult for them to ask questions.
  1. The person who had a terminal illness and their whānau generally had a good rapport with the AD attending medical practitioner and attending nurse practitioner.
  2. Most whānau felt the assisted dying assessments went smoothly.
  3. Most AD attending medical practitioners provided clear and easy to understand information about the AD criteria and safeguards:
  4. Whānau felt the practitioners upheld the safety of the person and their whānau; they respected the person’s mana (status, prestige), mana motuhake (autonomy, independence) and tikanga.
  5. Many whānau felt concern for the oranga (well-being) of assisted dying attending medical practitioners. Whānau had concerns for the clinicians’ safety on the day of the procedure.
    1. Would they be safe if a family member became upset during the AD procedure?
    2. Could they cope emotionally with their role?
    3. Would the practitioner be at risk of other people discriminating against them following the procedure?
  1. People who delayed applying for an AD assessment because they felt well could sometimes decline very quickly:
    1. A delay could mean people could die before they had completed the AD assessment process or before the AD procedure
    2. A delay could mean they may be unable to consent or assent on the day of the procedure (lapses into unconsciousness, for example)
  1. People have the choice to administer the lethal medication themselves or to have the AD Medical Practitioner do it for them. Most people chose to have the attending medical practitioner administer the medication:
    1. This involved a high level of trust in the assisted dying service and the AD attending medical practitioner or nurse practitioner.
  1. Whānau had support from their GPs, palliative care teams (provided by hospices, hospitals) and AD attending medical practitioners and attending nurse practitioners.
  2. Some people did not tell their health providers they were going to have an AD.<
  3. Some people reduced the amount of palliative care support they were entitled to; they feared health professionals’ judgment of them for having an AD.
  4. Very few people and whānau were offered counselling or psychosocial support before or following the AD. Only one whānau benefited from being offered counselling support.
  1. People who wanted an AD and their whānau often experienced judgmental comments, pushback and unsupportive remarks from health professionals when they enquired about AD or mentioned they wanted an AD
    1. Some people/whānau were given little to no support or information about AD after they told a health professional, they wanted an AD. Some experienced overt discrimination.
    2. Health practitioners told some people they could not discuss AD with them; some people were handed a card with the AD service number.
  2. Judgmental attitudes and behaviours caused barriers for people and whānau who wanted information and access to the assisted dying service.
  3. Negative responses affected people’s trust in health professionals.

Whānau want access to assisted dying information:

Whānau want transparency about AD and people to talk to about AD within their local communities and within different health care settings. This would support their AD inquiries and applications.

Advice for health professionals

Health organisations and health professionals would benefit from AD dying education and training to enable them to appropriately and supportively care for terminally ill people and whānau who seek AD information and support.

Advice for assisted dying attending medical practitioners and attending nurse practitioners

AD attending assisted dying practitioners and nurse practitioners should use plain language to speak to whānau to enable them to understand the assisted dying process and procedure.
  1. Avoid using jargon and medical terminology. Encourage whānau to ask questions.
  2. It can be distressing for the person and their whānau if the assisted dying practitioner arrives late for an assessment or procedure:
    1. Become familiar with the location of the person’s address and avoid being late and ensure you get there in plenty of time.
  3. AD attending medical practitioners and nurse practitioners should carefully consider if they feel comfortable with the AD role:
    1. Whānau can be disappointed when the doctor decides they can longer continue in the AD role.