"Finding out what the kaumātua and whānau manaaki want at this stage is key. "

Health professionals have a responsibility to deliver ‘bad news’ in a sensitive and kind way; for example, this might involve telling a kaumātua and their whānau about a life-threatening illness or a change in the older person’s health condition. Some kaumātua and whānau manaaki want to know more, some less; some may only be able to take a little information on board while others might be able to absorb a bit more. Finding out what the kaumātua and whānau manaaki want at this stage is key.  Would they like to make a time to talk with you and their health care team? You can help whānau manaaki by communicating how any new ‘changes’ in the older person’s health condition will affect them. Kaumātua and their whānau manaaki will need to process new information in their own time. They will need an opportunity to discuss how these changes will affect the kaumātua right now, and in the future.

"Try to work this out with the kaumātua particularly if their whānau are caring for them at the end of their life. "

At the time the older person is diagnosed, or where nothing more can be offered and death is imminent, some kaumātua and whānau will want to know how long the older person will have to live, although others will not. Is the illness or disease still at an early stage (perhaps the kaumātua has years of life left to live) or is at an advanced stage with fewer years to live? Has the health condition worsened since diagnosis and are the changes noticeable to the kaumātua and their whānau? If the health condition has become unstable have these changes reduced the older person’s life to weeks or has the kaumātua merely a few precious days or hours to live?

Not all kaumātua or whānau manaaki will want the details of what could possibly happen at the end stage, or when the person is dying. However, if there are physical changes expected at time of death (associated with a specific illness, for example), and if these changes are likely to cause distress for whānau then they will need an opportunity to hear about this. Being prepared for what is to come can help to reduce unnecessary stress or suffering. Being prepared for the worst is better than being unprepared.

If whānau manaaki want to know the timing of the older person’s death (or what form the death will take), but their kaumātua does not want them to know, this has to be handled sensitively. This can be complex because the wishes of the kaumātua need to be respected and their right to confidentiality is protected under the Privacy Act. Sometimes a caregiver may need to know what is ahead because they may need to arrange time off work, or they may wish to leave employment to provide primary care or to support an ageing parent who is caring for a spouse. Try to work this out with the kaumātua particularly if their whānau are caring for them at the end of their life.

It may be a good time to introduce the kaumātua and their whānau to the Advanced Care Planning (ACP) resources that are offered for Māori and non-Māori. An ACP resource will help kaumātua to have those difficult conversations with their whānau. It provides a tool for them to discuss their end of life wishes with them and also their health care team. The kaumātua can discuss what matters to them, what treatment and care choices they want, what they want to happen when they are dying, and what they want to happen after they die. This is an opportunity for them to explore any questions they may have or things they might need to know. The ACP document can help kaumātua and their whānau make important decisions at end of life and prepare for what is ahead.

Recommendations

For health and palliative care professionals, we recommend:

  • Taking care when explaining what the older person’s diagnosis means, how the health care team want to manage the illness, and how this will change as the illness progresses. It is also important to fully explain any concerns around the illness progression and anticipated death (e.g. what possibly could happen and what whānau manaaki need to be aware of moving forwards).
  • Providing space, and taking part in karakia (prayers, incantations, and chants), and waiata (singing) during meetings with whānau can be viewed as being very supportive, but only if the whānau wants this. Encourage the kaumātua and whānau to ask any questions they want to in this meeting; this can include questions about the diagnosis, prognosis, or the type and level of cultural care they wish to include in their end of life care planning. For example, a kaumātua make like to have a primary care giver continue to do their personal cares while they are in a hospital, hospice or residential care home, or they may wish to have someone with them at all times as they approach the time their wairua transitions at time of death.
  • Checking in regularly with kaumātua and their whānau and encouraging them to revisit their care preferences and make new decisions, particularly when changes occur.
  • That you identify and speak to the right people within the whānau as this is important. However, be mindful that sometimes a family spokesperson might change during the course of an illness and as new people may arrive or others leave. Keep checking in about these types of changes with the kaumātua (if they are able to respond) or a known family member (“Is [name/s still the right person for us to talk to about XYZ?”).
  • Encouraging kaumātua and whānau manaaki to consider who they want new health information to be shared with. Should it be the person the kaumātua has the closest relationship with or perhaps the person or people who are likely to provide the older person with the most support at the end of their life? These things can take time to decide. Allow time and space for the kaumātua and family to discuss these issues and arrive at a decision.
  • Enlisting the help of a dedicated Advanced Care Plan health professional who is experienced in working with Māori whānau end of life planning preferences.

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