Kaitiakitanga Assisted Dying Pathway
Kaitiakitanga (guardianship) on the assisted dying day
Whānau Kaitiakitanga - Family Guardianship before and on the assisted dying day
Hine-te-Pō is the passage of time that just before the assisted dying day and on the day of the assisted dying procedure. Whānau are kaitiaki (guardians) who provide care, protection, advocacy and support just before and on the assisted dying day.
Benefits of having an assisted death
Whānau were able to whakamana their whanaunga (relative) to have an assisted death and uphold their mana motuhake (autonomy and independence) until their last breath.
Whānau were supportive kai manaaki (caregivers) and kaitiaki (guardians) before, and at the assisted death:
They supported their loved person to end their pain and suffering and have a dignified death.
Whānau felt relieved when their loved person was no longer in pain and suffering.
A peaceful and ngāware (gentle) death
Attending the assisted death was a different experience compared with a death from natural causes.
Whānau felt relieved and were grateful their loved person was no longer suffering or in pain.
Whānau felt proud their loved person was able to uphold their mana motuhake (autonomy and independence) until their last breath.
Whānau thought the assisted dying process was gentle and mana enhancing for the dying person and their whānau.
Some whānau helped release the person’s wairua (gave the dying person their blessing, said karakia (tuku te wairua) and prayers to release their spirit), listened to waiata (songs) or sang waiata when they were dying and afterwards.
Support during the assisted death
Whānau were grateful that they were able to support their loved person to achieve their wish to have an assisted death.
Whānau valued the Attending Medical Practitioners and Attending Nurse Practitioners who supported their relative, and the family, on the day of the procedure.
Cultural support at the assisted death
Whānau provided aroha (love, care, empathy) at the end of a loved person’s life; they provided manaaki (care) and companioned the person until they died, 24/7.
Whānau are diverse. They used their tikanga (customs) to support the person having the assisted dying procedure:
The person chose the waiata they wanted to listen to before they died.
Some, but not all whānau, said karakia or had waiata before, during or after the assisted dying procedure.
People chose the special taonga they wanted to wear or hold on the day of the procedure (korowai, kōhatu, pounamu).
Although assisted dying is new it was considered a “good tikanga” by some whānau because it empowered the terminally ill person and they had a dignified death.
Whānau could farewell the person in manner they wanted to before they had the assisted dying procedure.
Having an assisted death meant people could consider new death tikanga (for example, being prepared in an indigenous flax shroud before the assisted dying procedure).
Not all whānau drew on their tikanga (cultural customs) or spiritual rituals or practices when someone was dying from the assisted death:
Some whānau may not normally follow any cultural or spiritual customs.
The newness of assisted dying (that is, a medically sanctioned death), may have overridden or influenced the usual death care practices of whānau.
Planning and organising for the assisted death
Whānau supported the person with a terminal illness to prepare for their assisted death:
Whānau helped arrange hui (meetings) with whānau, kaumātua and funeral directors right up to the dying day.
Whānau supported the person to plan and carry out their death tikanga (cultural customs).
Whānau made sure the environment was prepared and everyone was present who needed to be there.
One person with a terminal illness completed an Advance Care Planning document which was helpful for the whānau.
Whānau were careful about who was told about the dying date and the timing of the assisted death to protect their loved one from any disruptions on the day.
The terminally ill person chose who they wanted present at their assisted death.
Being able to say ‘goodbye’
Knowing in advance the day someone was going to die made it possible for people to say ‘goodbye’ properly. Whānau could plan rituals to say ‘goodbye’:
The ill person enjoyed a last outing with whānau; they enjoyed quality time with whānau (for example, a day out with the mokopuna, fish and chips or a family photoshoot)
The ill person could give last-minute advice to their whanaunga (relatives) before the procedure.
Just before they died, the ill person could communicate with their whānau, share a joke, give koha to people, have a last whisky.
Planning and preparing for tangihanga
Whānau supported the person to organise their tangihanga in preparation for the assisted death.
Knowing the dying date helped whānau organise financial arrangements to fund tangihanga and purchase burial plots.
Whānau had time to organise the marae, kai and to notify whānau.
Knowing the dying date gave terminally ill people the opportunity to plan in advance what they wanted to happen to their tūpāpaku (body) (burial or cremation and the urupā they would lie in).
On the day of the assisted death the terminally ill person and their whānau felt relaxed about what would happen to their body after they died because they had been able to prepare well:
They knew the funeral director because they had met them previously; they had chosen their casket and had made their tangihanga and internment arrangements; they knew where they were going to.
Being prepared gave whānau more time to experience their grief on the day instead of being busy and distracted organising the funeral director and tangihanga.
Gathering together as a whānau for the assisted death
Whānau and friends could plan to return to Aotearoa New Zealand to be present at the assisted death because they knew when someone was going to die.
Often only a few whānau were present at the assisted death; several whānau had many people attend the death although not everyone may have been physically present for the procedure.
The ill person felt in control on the assisted dying day
The person who was having the assisted death was able to organise in advance how they wanted to spend their final hours:
They chose the people they wanted to be present. They chose the music they wanted to listen to; kai (food) and inu (drinks) they wanted. They often chose what happened on the day (talking with family, singing, listening to music, having a last drink, having a last joint).
Wairuatanga (spirituality) helped whānau cope
Whānau drew comfort from their spiritual beliefs and tikanga (customs) when someone had an assisted death:
Whānau were sensitive to tohu (spiritual signs) when someone died and afterwards; it provided meaning in a time of great sorrow.
Challenges related to the assisted dying day process and procedure
Whānau views about assisted dying
Whānau often had mixed feelings about the assisted death. On the one hand they wanted to support their relative and yet assisted dying was new and unknown. Many people felt very sensitive in the days leading up to the assisted dying day, and on the day of the assisted death itself:
Whānau felt burdened knowing the assisted dying date.
Whānau experienced rising anxiety as the assisted dying day approached and on the day of the assisted death:
They were fearful and did not know what to expect.
Whānau felt uncomfortable because they had not attended an assisted death before; they felt unprepared for it.
Seeing the needle and medication caused distress. Whānau were unprepared to see the size of the needle and the assisted dying medication:
Younger family members experienced distress seeing the size of the needle.
Whanau could experience shock at the suddenness of the assisted death. Whānau did not feel prepared for how quick the death was:
Just before the person died they were often walking around, talking, joking, offering advice, singing, having whisky or sharing a joke.
Whānau reacted to the assisted death like they would a sudden because (it only took a few minutes to die after the last injection):
Whanau often had anxiety or went into shock.
Whānau feared relatives could arrive and disrupt the assisted procedure or try to stop it.
Recommendations from whānau for assisted dying services
To help prepare whānau, they could be shown a syringe or view a photograph of the syringe and medication by an attending medical practitioner during an assisted dying assessment.
Whānau require good preparation and support to help them manage their emotional health before the assisted death and on the assisted dying day. Whānau should ensure that everyone attending the assisted dying day procedure is fully informed of the process and what it involves.
Confusion about assisted dying medication and its administration
Many whānau we interviewed were misinformed or confused about the assisted dying medication options and administration processes.
Most whānau did not know that an assisted death involves the person choosing how they want the lethal medication to be given:
There are four ways that lethal medication can be taken/given to terminate a person’s life; it can either be self-administered (by the terminally ill person) or administered by an assisted dying attending medical practitioner (AMP) or a nurse practitioner (ANP) if an AMP is present).
Only two people whose whānau took part in the Waerea study chose to self-administer the medication; most people wanted the assisted dying medical practitioner to administer it.
Recommendations from whānau for assisted dying services
Whānau need more support to understand the assisted dying medication and administration options available. Māori community assisted dying wānanga and public health campaigns could support this.
The right place or space to die administration
The terminally ill person chose the place and space they died in; at home (lounge, bedroom, outdoors) or in a hospital setting:
Most people chose to die at home and therefore were able to prepare the home in the way they wanted for the assisted death (someone died in a marquee at home).
One person had the procedure in hospital. However, the space that was provided was not ideal (used to store tūpāpaku – bodies).
Recommendations from whānau for assisted dying services [Heading Level 3 – subtitle of heading level 2]
Culturally safe spaces are needed in healthcare facilities (hospitals, hospices, aged residential care homes, funeral homes) to ensure dying spaces are culturally safe and appropriate.
Whānau death education - Changes in tūpāpaku
Whānau who were less experienced being with dying people and viewing a tūpāpaku (body) were unprepared to see their loved person’s body after they died; seeing the quick discolouration in the person’s tūpāpaku (body) after they died caused upset.
Recommendations from whānau for assisted dying services
Assisted dying doctors and health care professionals could help prepare whānau for the death by explaining to them what changes are likely to take place in the tūpāpaku following the assisted death. If dying is a new experience for whānau it can be stressful to experience a death for the first time, regardless of whether it is an assisted death or a death from natural causes.
Choosing who will attend the assisted dying day
Whānau said assisted dying is a new and different way to die. The person with a terminal illness and their whānau kaitiaki considered tamariki, mokopuna and other people who could potentially struggle with being present during the procedure. They wanted to ensure the procedure went smoothly, without any disruptions. They chose carefully who would attend the assisted death:
It was important that everyone had a choice about whether they wanted to attend the assisted death:
Some whānau members (people who felt they would not cope, adult children, mokopuna) declined being present at the assisted death; their choice was supported by the person having the assisted death and their whānau.
When whānau turned up unexpectedly on the day of the assisted death they were unprepared for the assisted dying procedure and did not cope with what was happening. They could become distressed and disruptive.
Recommendations from whānau for assisted dying services
Whānau discussions about the assisted death should include everyone who is attending the assisted death. If whanau turn up unexpectedly, they should be informed of the assisted dying process and procedure and made aware of the things that may potentially upset whanau (the death may appear quite sudden compared to a natural death (where a person may languish for weeks, days and hours), the needle and medication (if this is being used) is larger than you might expect and there are three forms of medication given at different times are some things newcomers should be informed about.
Informing whānau just prior to the assisted dying day
Whānau said assisted dying was new and different and they wanted to protect the person having the assisted death, the whānau who were attending and the assisted dying doctors and nurses. Some people wanted to avoid involving specific family members in case it caused disruptions, particularly if certain people were known to be judgemental or have mental health issues or social problems:
The ‘timing’ regarding when to tell people about the assisted death felt challenging.
Extended whānau were often told the dying date up to a week before the actual day.
Some ill people invited trusted healthcare professionals to attend their assisted death.
Recommendations from whānau for assisted dying services
Whānau may need support to discuss and make decisions around who they want included or excluded at the assisted dying procedure. They may need support to help manage any mamae (emotional pain) and fall-out from people who are not included.
Lack of whānau communication about the assisted death
Whānau experienced distress when they were unable to discuss the assisted dying process with a responsible health professional:
Distress could cause disruptions to the assisted dying process and procedure creating an unsafe environment and situation for the terminally ill person and their whānau.
Recommendations from whānau for assisted dying services
Whānau should be included from the start of the Kaitiakitanga Assisted Dying Pathway to ensure they have an opportunity to enact their kaitiakitanga and oversee the right processes and the assisted dying procedure.
Caring for everyone during the assisted dying procedure
Assisted dying is new and unknown and it presented an additional layer of complexity for whānau to navigate, especially leading up to the dying day:
Whānau manaaki (people who were caring) and kaitiaki (often the same person/ people within the whānau) often became fatigued prior to the assisted death.
Whānau felt concerned how certain family members would cope during the assisted dying procedure:
They were afraid someone could become upset and interrupt the assisted dying procedure.
Whānau were concerned for the welfare of the attending medical practitioner and the nurse practitioner on the assisted dying day:
Whānau worried that someone in the whānau might be disruptive or interfere with the assisted dying procedure and harm the assisted dying doctor or nurse practitioner.
Whānau needed more information about assisted dying procedure
Most whānau who attended the assisted death felt they were not informed enough about the assisted dying procedure and what would happen.
Searching for information on the internet was often unhelpful however some information about assisted dying (what happens to the person when they die) was incorrect and caused distress:
Incorrect information caused several mokopuna to become more distressed.
Usually only whānau kaitiaki (person or people who walked closely alongside the person having the assisted death) knew about the specific details of the assisted death because they had been preset at the assisted dying assessments:
Some kaitiaki felt as though they did not have enough awareness of what the actual dying procedure would be like.
Recommendations from whānau for assisted dying services
Whānau need more information and support to understand the assisted dying process and procedure. More Māori community education and public health campaigns could help to increase awareness of the clinical pathway.
Grief following the assisted death
When the ill person had discussed or made their end of life wishes known to their whānau or, they planned and organised what they wanted to happen on their dying day and afterwards, whānau said it helped their grief process.
Many whānau spoke about the spiritual healing, beauty, peace, and love that was present during the assisted death. This helped whānau to move through this transitional phase on the assisted dying pathway.
Whānau experienced fear, anxiety, confusion and grief leading up to the assisted dying day; this became heightened during the assisted dying procedure and after the person had died.
Whānau often felt conflicted about supporting their whanau to have an assisted death. They felt proud of them for being a trail blazer and upholding their mana motuhake and they felt grateful the person was no longer suffering and in pain. However, they also could feel guilty and feel regretful about their involvement. They often felt complicit (involved in something that was morally wrong) or conflicted (confused) about their involvement.
Recommendations from whānau for assisted dying services
Whanau should have access to support groups and counselling support to help them process their confusion, conflicted emotions and grief as soon as possible. Support groups would help whanau process their thoughts, emotions, beliefs early in the process and this could help to reduce the burden of grief they feel following an assisted death.