Planning ahead means preparing for end-of-life by making important health decisions before losing the ability to make those decisions in the future [16412]. There are a number of important things that Aboriginal and Torres Strait Islander people may want to consider when planning ahead for end-of-life including legal, financial and health-related decisions [44594]. By planning ahead, a person can communicate their wishes to family, their doctor or health worker before they lose the capacity to make their own decisions [16412][44594][32866]. Planning ahead can also support family members to feel more confident and comfortable to make informed decisions for their loved one, and potentially reduce disagreements between family members [33065][26925]. One of the first steps to planning ahead is advanced care yarning, which means talking to a doctor, an Aboriginal Health Worker or family about future medical treatment and attitudes, beliefs and values surrounding death [44594]. Advance care yarning can help identify a person’s preferences for when they approach end-of-life, such as returning to Country [43533].

Aboriginal and Torres Strait Islander people can plan ahead through the preparation of four key documents:

• a will
• a power of attorney form
• an enduring guardianship form
• and an advance care plan [16412].

By creating a will, a person can determine what will happen to their personal belongings (property, land and money) when they die [25691]. A will may include details of traditional knowledge and contain information for funeral arrangements, such as how and where a person would like to be buried [44594][25691]. A power of attorney is a signed document which permits an allocated person to make financial decisions for someone who is unable to [16412][25691]. An enduring guardian is someone who can make decisions for a person who has lost the capacity to do so themselves, such as where they live and the healthcare and other services they receive [16412]. An advance care plan outlines the beliefs, values and medical wishes of a person’s future health care [35799]. An advance care plan differs from an advance care directive; although both terms are commonly used when discussing advance care planning, an advance care directive is a legally binding document that includes the treatment preferences for the end-of-life care of someone aged over 18 years [35548]. It is also important to remember that legislation can differ between states and territories [47082][41830].

Sensitive communication between health care professionals and patients is an essential component of planning ahead [26925]. Discussing end-of-life care can be difficult and it is important to understand that decisions may be resolved over time [35799].

Following the passing of an Aboriginal and/or Torres Strait Islander person, there are a number of cultural practices and spiritual needs that should be considered and respected [44594]. For example, it may not be culturally appropriate for non-Indigenous staff members to contact the next of kin when someone has passed [21898][29818]. Other examples of cultural practices and protocols may include:

• not using the deceased person’s name
• avoiding eye contact
• the performance of a smoking ceremony.

It is important to note that such practices are not homogenous across all Aboriginal and Torres Strait Islander groups, and communication with the patient and their family is encouraged to understand their specific cultural needs and individual choices [21898].

Where possible, Aboriginal Health Workers and Aboriginal Hospital Liaison Officers should be introduced to the family of a person approaching end-of-life to help build trust, provide cultural support and offer advice [44594][29818][43533]. Non-Indigenous staff may also seek guidance from Aboriginal Health Workers and Aboriginal Hospital Liaison Officers [21898], and when they are not available, they should talk with the family so there is a shared understanding of what will happen after a patient has passed away [40671]. Staff should also be mindful that Aboriginal Health Workers and Aboriginal Hospital Liaison Officers may have a personal relationship with the patient and family.

Grief is the normal reaction to a loss, but each individual will have their own experience, which is likely to affect them emotionally, mentally and physically, as well as impacting their behaviour and potentially their spiritual beliefs [29818][43533]. Emotional and spiritual support from health professionals or Aboriginal and/or Torres Strait Islander Health Workers should be available for people experiencing grief [40671]. This could be general grief and bereavement support, or it may be more targeted if the person is at risk of, or experiencing, prolonged grief.

The grief experienced by Aboriginal and Torres Strait Islander people can sometimes be multi-layered, and at times mean that people are grieving for more than one person at any one time [43533]. It can also be compounded by other losses such as the historical removal of children [43673].

People who provide care for those living with a life-limiting illness should also be aware of the impacts it can have on their own resilience and strength, especially when supporting themselves, their families, their colleagues and the people they care for [43533].

It is important to understand the cultural and spiritual considerations of Aboriginal and Torres Strait Islander people and their families when providing person-centred palliative care [29818][43533]. A set of specific principles assist in the delivery of culturally appropriate palliative care for Aboriginal and Torres Strait Islander people, including:

• equity of access (i.e. equal opportunity for accessing care)
• empowerment and autonomy (i.e. individual choices and shared decision making)
• trust (i.e. trusting relationships can be developed by acknowledging and demonstrating a person’s spiritual and cultural beliefs)
• cultural respect [15970][35441].

There are many Aboriginal and Torres Strait Islander language groups in Australia and healthcare providers should recognise that cultural and spiritual practices and individual choices may vary across these groups [29818][21898][44594]. Such practices to consider when providing palliative care to Aboriginal and Torres Strait Islander people include, but are not limited to:

• kinship – recognising that Aboriginal and Torres Strait Islander kinship systems extend beyond immediate family members
• communication – being mindful of verbal and non-verbal communication styles and that plain language explanations are often preferable to medical jargon
• Country – recognising that some Aboriginal and Torres Strait Islander people approaching end-of-life may wish to pass away on Country
• Sorry Business – understanding that this is a period after the loss of a person where many Aboriginal and Torres Strait Islander people follow traditional practices and/or ceremonies [29818][35441][42770][40671].

Directly referring to ‘death’ and ‘dying’ may make some Aboriginal or Torres Strait Islander people uncomfortable and the use of alternative terms such as ‘finishing up’, ‘passed on’ and ‘not going to get better’ may be more culturally appropriate [29818]. It is important to ask a sick person who they would like their health matters to be discussed with, as it is often the responsibility of the family, not the individual. The family may express specific preferences, such as the use of traditional medicine [44449], additional space to accommodate more than one person to stay overnight and request multiple visitors at once. Supporting people to observe their traditions at the end of someone’s life can assist the person with a life-limiting illness, as well as help their family and community with their grief and bereavement [43533].