Kaitiakitanga Assisted Dying Pathway
Hina-te-Ao | Phase 3 Summary
Kaitiakitanga (guardianship) after death
Whānau Kaitiakitanga: Family Guardianship after the assisted death, during tangihanga and bereavement
The Hina-te-Pō phase refers to the passage of time following a person’s death Whānau are kaitiaki (guardians) who provide care, protection, advocacy and support after someone has died and this continues through the tangihanga, bereavement and healing journey.
Including whānau in assisted dying planning and tangihanga
Whānau who openly discussed assisted dying at the start of the terminally ill person’s end of life journey were more likely to agree with the person’s tangihanga arrangements following their assisted death. Assisted dying added another layer of complexity after the person died:
Whānau who were not present in Hina-Uri, Phase 1 and Hina-te-Pō, Phase 2 of the Kaitiakitanga Assisted Dying Pathway could not only become distressed during the assisted dying procedure (because they were unprepared), they could also try to override tangihanga wishes and other plans made by the deceased person causing distress not only to themselves, but their whānau.
Recommendations from whānau for assisted dying services
Whānau who wish to be present at the assisted death and tangihanga should become involved in the Kaitiaki Assisted Dying Pathway early in the journey; this will enable them to take part in end of life discussions that include the person’s end of life wishes and tangihanga arrangements.
Tangihanga after assisted death
Because funeral directors had often been approached before the assisted death by the ill person, they were aware of the date and time the person would die, and they were on call to transfer the tūpāpaku (body) to their service or to the place the tūpāpaku would lie in state.
Not everyone who died had a formal tangihanga after the assisted death. Some hapū do not allow people to lie in state at the marae, or to be buried in the urupā (cemetery); tangihanga can be treated differently if the deceased took their own life:
Some ill people did not want their assisted death to be looked upon negatively as a suicide by others including people at their marae (gathering place). Many whānau feared judgement or discrimination:
Some kaumatua who had spiritual leadership within their community believed assisted dying was not tikanga.
Talking about assisted dying at tangihanga
Assisted dying was mentioned at several tangihanga (funerals) if only briefly.
Two whānau used the opportunity to tell others about assisted dying; one family advised their whānau about the assisted dying criteria. Whānau said people responded positively and accepted the information.
Tangihanga and privacy about the assisted death
Most whānau who were interviewed in the Waerea study said assisted dying was generally not mentioned at the deceased person’s tangihanga by the kai korero (speakers) nor was it communicated openly among whānau pani (bereaved families) or spoken about to other whānau at the tangihanga:
One kaumātua said to mention how the person died was inconsistent with their normal tangihanga approach.
Other whānau commented that the assisted death was considered a ‘private’ matter and so people were not told.
After the tangihanga many whānau and kaitiaki chose very carefully who they told about the assisted death, particularly those outside the whānau:
Information about the assisted death was only shared with others if the people who enquired about it were going through a similar experience or were very sincere.
Whānau said the information was private and they would only share the information if it seemed “appropriate.”
Whānau wanted to protect the deceased person’s privacy to preserve their mana after death.
Bereaved whānau were mindful they did not want to “influence” others about assisted dying and so were careful who they told.
Whānau kaitiaki continued to protect the privacy and mana of some kaumātua who valued their privacy.
Issue with Death Certificate recording ‘assisted dying’
Death Certificates record how people die, including by assisted death. Death certificates have to be shown to some organisations following the person’s death. Whānau considered recording ‘assisted dying’ instead of the palliative condition the person was diagnosed with, a breach of the person’s privacy; they believed it could reduce the person’s mana after their death if people knew:
Some whānau were distressed when they had to produce a Death Certificate that recorded ‘assisted dying’ as the cause of death.
One person used a black pen to blank out the cause of death before the document was shown to anyone.
Recommendations from whānau for assisted dying services
To avoid distress, whānau should be made aware that Death Certificates identifies the cause of a person’s death. They have the option of blacking out the information on the death certificate before showing others.
Loss, grief and healing
Whānau pani (bereaved families) took care of the person’s tūpāpaku (body), and they were involved in the tangihanga; they also participated or carried out rituals to bury or cremate the body:
Whānau experienced mixed emotions. They often felt proud of their loved one for fulfilling their mana motuhake, yet they also experienced deep grief and confusion at this time (guilt, regrets)
Many people felt the need to keep silent about the assisted death.
Most peoples’ grieving processes were complicated, prolonged, long lasting, silent and often hidden.
Taking care of the deceased person’s mana continued after the person died. Kaitiaki tried to protect them from any form of discrimination related to the assisted death:
Protecting the person’s mana by keeping the assisted death private took its toll on whānau.
Grieving peoples’ mauri (energy life force) was negatively impacted. Whānau expressed feeling sad, depressed, anxious and at times distressed.
Some whānau were excluded from knowing about the assisted death and being involved and they were impacted by this:
Whānau who were excluded could feel very hurt and upset when they discovered a relative had had an assisted death and they had not been included:
Whānau were excluded because they were thought to be judgemental or discriminatory or would be disruptive during the assisted dying procedure.
Whānau were excluded if the ill person or their kaitiaki thought they needed protecting (mental health problems or social problems, for example).
Most whānau were not offered bereavement support, nor did they seek support from mainstream health services. Only one bereaved whānau member had counselling support.
Some whānau had little to no trust in healthcare services to provide support as assisted dying is a new way of dying in New Zealand.
What helped whānau bereavement following an assisted death:
Whānau said it helped soften their grief when the person who had the assisted death had pre-arranged their after death care and tangihanga:
Because the ill person knew when they were going to die it gave them time to plan for their death and arrange what they wanted to happen following death, including organising details of their tangihanga.
One person completed an Advance Care Plan which the whānau found helpful.
Whānau felt consoled because they felt proud their loved person had an assisted death; they had used their own mana or agency to realise their wish.
Whānau felt comforted because they valued the person being a trailblazer and a role-model; they were grateful the person had a peaceful and dignified death.
Being together as whānau at the assisted death and being with the tūpāpaku afterwards was healing for families. Fulfilling their cultural and familial responsibilities also helped healing.
Whānau drew on their wairuatanga (spirituality) to strengthen them after the loved person died. Their tikanga (customs) provided structure during this pōuri (sad) and challenging time.
One person did not pursue counselling as she said health professionals had no experience in assisted dying.
Only one person benefitted from receiving counselling support following her mother’s death.
Whānau want support to help them process their bereavement.
Recommendations from whānau for assisted dying services
Support is needed to prepare whānau who are traveling each phase on the Kaitiakitanga Assisted Dying Pathway. New healing approaches are needed to support bereaved whānau before, during and following an assisted death. Whānau should have access to a wide range of healing modalities and approaches to support them with their loss and grief. This could include assisted dying support groups, rongoā healing, grief counselling and spiritual healing, for example. Assisted dying bereavement education and training is needed to support health clinicians, Māori kai rongoā (natural healers) and tohunga (experts) and spiritual leaders to care for whānau pani.