Archives: Topics

Dispossession of land, population displacement, prejudice in everyday life and outright discrimination have, over the subsequent generations, resulted in Indigenous Australians being disadvantaged to the extreme and denied the chance to share in the benefits of one of the wealthiest nations in the world. Kapuscinski ¹

The effects of colonisation – disadvantage, dislocation and discrimination – are still having an impact on Australian Indigenous peoples every day. Despite the fact that those who identify as Aboriginal and/or Torres Strait Islander make up a relatively small percentage of the Australian population (3.5%), they are over-represented in many key indicators of disadvantage.²

This disadvantage is often spoken about in the various initiatives aimed at ‘closing the gap’. Moving forward together to build a better future for all Australians means that our shared history and the trauma it has caused, and continues to cause, needs to be openly acknowledged.

This means recognising that:

• The land we live on, and prosper from, was previously inhabited by Indigenous peoples, and their displacement was not founded on mutual agreement
• The social and economic impacts of invasion, dispossession, marginalisation and control of Indigenous peoples have accumulated across generations
• This impact has been amplified by policies and practices that have systematically disadvantaged Indigenous peoples
• In many instances, this has resulted in the transmission of poverty, poor health and other forms of disadvantage from generation to generation
• Indigenous peoples have courageously resisted and sought to overcome adversity generation after generation after generation. Australians Together³

In situations where people do not have an opportunity to heal from trauma, they are likely to unknowingly pass it on to other family members and loved ones, especially children. Children can experience difficulties with attachment, disconnection from their extended families and culture and high levels of stress from family and community members who are dealing with the impacts of trauma.

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Key Video Resource – Intergenerational Trauma (4:02)

This animated video, developed by the Healing Foundation, explains how intergenerational trauma is impacting Aboriginal and/or Torres Strait Islander communities.⁴

Check the thinking points below for some questions to consider with regard to this video.

 

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Trauma-aware, healing-informed approach to care

Australian Indigenous peoples are becoming aware of the trauma that affects their everyday lives and starting their healing journeys. Trauma-aware, healing-informed care is strengths-based approach to healing that is based on knowledge and understanding of, and a responsiveness to the way that trauma affects people’s lives. Effective healing programs are those that are designed in partnership with communities and guided by an understanding of their unique experiences and healing needs. Healing programs can strengthen the connections that people have with culture and community, and supports health and wellbeing.

Barriers

Although Aboriginal peoples and Torres Strait Islander peoples have distinct cultures, their shared experiences of historical and ongoing trauma have created shared barriers to accessing palliative care.

Lack of access to acceptable and appropriate palliative care services for Indigenous peoples is a key concern not just in Australia, but internationally as well. Despite being recognised as a priority group to receive palliative care (given the disproportionately high rates and severity of chronic disease), Indigenous people globally are among those least likely to receive adequate palliative care. In addition to this, the cultural differences around beliefs in relation to dying, death, serious illness, health and healthcare between Indigenous and non-Indigenous people mean that ensuring cultural respect and sensitivity in provision of palliative care is vital.¹

A review of literature focusing on the key features of palliative care service delivery for Indigenous peoples in Australia, New Zealand, Canada and the United States describes the following needs, preferences, and barriers:¹

Needs

Meaningful engagement and collaboration with communities before designing and implementing programs Education and training for the Indigenous community and healthcare staff in palliative care.

Preferences

Living with family and within the community at end of life Having families at the centre of decision-making processes Being able to gather as a family Being able to practise specific cultural ceremonies and rituals at the end of life Having open and honest communication from healthcare staff who respect the individual’s choices and demonstrate compassion and kindness Having access to Indigenous healthcare staff.

Barriers

Distance and affordability of services Lack of culturally appropriate services Difference between Western medical models and Indigenous cultures in understandings and priorities for end-of-life care Disrespectful and racist treatment by healthcare staff Poor communication of end-of-life care issues by healthcare staff Hospital policies that restricted visitors, especially extended family gatherings Misinformation and misunderstandings regarding palliative care.

Barriers in the Australian context:

Considerable discrepancies in health and life expectancy mean that Australian Indigenous peoples experience the death of family and community members far more frequently, and at much younger ages, than non-Indigenous Australians. The significant health inequalities as well as barriers to healthcare access are of particular importance in the context of palliative care.

Some of the barriers that have been identified include:

• Lack of awareness / understanding of palliative care
• Language and communication issues: reluctance to talk about dying and death; poor literacy / health literacy; lack of translated, culturally-appropriate resources
• Poor access to professional interpretation services
• Mismatching cultural, religious and/or health beliefs and preferences between individuals and service providers
• Fear or mistrust of ‘Western’ medicine and/or healthcare providers and services
• A preference for family-based or kinship-determined decision-making
• Challenges accommodating cultural practices in palliative care settings
• Lack of / late referral to, or initiation of, palliative care
• Racism, discrimination (historical and current) and cultural stereotyping
• Financial disadvantage.²

The barriers that have been identified here need to be carefully considered by health professionals and services in the provision of palliative care. Specific aspects relating to care provision are covered in Section 5 of this toolkit.

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Key Video Resource – PCC4U/IPEPA Yarn: Barriers to accessing palliative care (3:36)

This video excerpt provides a perspective on the shared barriers experienced by Australian Indigenous peoples when it comes to accessing palliative care.³

Check the thinking points below for some questions to consider with regard to this video.

 

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Enablers

Overcoming the barriers to palliative care that have been identified is possible through focus on some key enablers. In a similar way to how the barriers were described in Activity 2, enablers can also be described as approaches that target both the consumer, or Australian Indigenous peoples, and service-side, or health professionals and health services:⁴

Consumer-side enablers	Service-side enablers
Awareness-building activities targeted at individuals and communities, focusing on what palliative care is and the available services and supports A focus on building long-term relationships, and being inclusive and respectful of Aboriginal and/or Torres Strait Islander cultural practices Strengthening the capacity and capability of families and communities to care for people at home.	Ensuring culturally-safe and responsive care in all health service interactions Building the capacity of the non-Indigenous health workforce to provide culturally-responsive care Employing Aboriginal and/or Torres Strait Islander health workers and practitioners in palliative care services Building partnerships and networks between specialist palliative care, primary healthcare and communities.

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Key Video Resource – PCC4U/IPEPA Yarn: Deep, genuine listening (2:05)

This video excerpt provides a perspective on the importance of deep, genuine listening in providing culturally-responsive palliative care for Australian Indigenous peoples.³

Check the thinking points below for some questions to consider with regard to this video.

 

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Key Video Resource – Greg Chatfield’s Story: An Indigenous Palliative Care Journey (13:57)

Greg Chatfield “Chatty”, was a proud Aboriginal man with strong connections to Kamilaroi and Ngunnawal Country. He was diagnosed with motor neurone disease, a degenerative neurological condition, with limited life expectancy. He was initially very reluctant to engage with the palliative care service because of his past experience with institutions and mainstream health services, and because of his need to look after his mob as the Elder.⁵

Check the thinking points below for some questions to consider with regard to this video.

A key factor in enabling access for Australian Indigenous peoples to quality palliative care is supporting an understanding of palliative care that reinforces its holistic approach.

By viewing the World Health Organization (WHO) definition of palliative care alongside the National Aboriginal Community Controlled Health Organisation (NACCHO) definition of health, it is easy to see the similarities.

WHO defines palliative care as…	NACCHO states that Aboriginal and Torres Strait Islander health is…
…an approach that improves the quality of life of individuals and their families facing the problems associated with life-limiting illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and the treatment of pain and other problems, physical, psychosocial and spiritual.1 WHO	…not just the physical well-being of an individual but refers to the social, emotional and cultural well-being of the whole Community in which each individual is able to achieve their full potential as a human being thereby bringing about the total wellbeing of their Community. It is a whole of life view and includes the cyclical concept of life-death-life.2 NACCHO

In both these definitions, the concept of health is one that focuses not just on physical, but also psychological, social, cultural, and spiritual.  A palliative approach also includes the person’s right to choose to be an active participant in their care, which supports the right to self-determination.

It is very important for everyone to be aware, and for Australian Indigenous peoples to understand that palliative care is not a new way of knowing, being and doing; it is the traditional way and view of all aspects of health and wellbeing (as considered in Section 2) but given a Western, biomedical term. This video from the IPEPA Project, helps to develop an understanding of palliative care from an Aboriginal and Torres Strait Islander perspective.

To view more resources from the IPEPA Animations project, refer to the related links section below.

There may not be words in traditional Australian Indigenous languages for ‘palliative care’, but there are ways of speaking about caring for Elders and those at the end of life that are used to help build understanding in communities and health services about what palliative care is. These are closely linked to the spiritual and cultural belief of life as a continuum – Life-Death-Life.

For example, Wiradjuri people say Winhanganhanhal to those who have lost a loved one. It means ‘remember, think, know’ – if you are remembering and thinking about the person then they are never really lost to you.

In another example, when Darug Elders (in Western Sydney) were asked what to call palliative care. The word they suggested was Ngalawan, which means ‘they live, they remain’.

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A living model for Aboriginal and/or Torres Strait Islander palliative care

Access this PDF resource to view the diagram and description of the ‘living model’:³

A living model for Aboriginal and/or Torres Strait Islander palliative care

Eight key principles of palliative care were identified in the development of this model and affirmed by experts in Aboriginal health as foundation principles to underpin the model:

1. Cultural safety
2. Equity
3. Autonomy
4. The importance of trust
5. Humane, non-judgemental care
6. Seamless care
7. Emphasis on living
8. Cultural respect.⁴

A static model … [should not] be imposed on services or communities but rather a living, flexible model is required to assist with service delivery and health policy. McGrath⁵

An example of this kind of model in practice can be seen in the Winnunga Care and Support Clinic at the Winnunga Aboriginal Community Health Service in ACT. This involves a regular meeting between the clinic healthcare staff and visiting palliative care team. Together they identify deteriorating patients with life-limiting illness who are approaching end of life. Winnunga then continue to care for the patient and family with the support of the specialist palliative care team. If referral to the specialist home-based or inpatient team is needed, Winnunga remain part of the journey and are involved in the care that is provided, including joint home visits, family meetings and goals of care planning. This model has been described as a ‘fluid and evolving model of care, developed by listening to and learning from the community’.⁶

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Illness trajectories

The life expectancy for Australian Indigenous peoples is approximately 10 years lower than non-Indigenous Australians, with the leading causes of death being:

• Coronary heart disease
• Diabetes
• Lung cancers
• Chronic obstructive pulmonary disease (COPD)
• Suicide.

Diabetes and suicide were not in the five leading causes of death for non-Indigenous Australians, which were coronary heart disease, dementia including Alzheimer’s, cerebrovascular disease, lung cancer, and COPD.⁷

This means that, apart from suicide deaths, the majority of Aboriginal and/or Torres Strait Islanders have an end-of-life trajectory that follows a chronic disease pattern. In this pattern, people experience a gradual decline in health with intermittent acute episodes. Such episodes often require hospitalisation, are accompanied by a significant risk of dying, and usually result in a decline in function.

Refer to PCC4U Core Module 1: Activity 7 to review information on illness trajectories.

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PRACTICE POINT

It is important to understand that the impact of multiple hospitalisations and the experience that Aboriginal and/or Torres Strait Islander peoples have interacting with various members of the health workforce can have a significant influence on quality of life during the end-of-life journey. Emphasis on culturally-responsive communication, multidisciplinary teamwork and symptom management are key to providing quality, family-centred palliative care.

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PCC4U Core Module 2: Communicating with people affected by life-limiting illness provides detailed information about how to communicate with patients and their families / carers about their illness, associated symptoms, goals of care and clinical management. Talking about dying and death is a necessary part of care, but this can be difficult. Healthcare professionals use communication frameworks to guide conversations and reduce the stress associated with difficult conversations.

Conversations with Australian Indigenous peoples about the care they want as they age or become sick can be especially difficult. Talking about dying, death and palliative care can be taboo in many communities. The role of Aboriginal and/or Torres Strait Islander health professionals in helping people manage their fear and support the development of trusting relationships is very important. It is essential to develop ways of working together to support effective communication.¹

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PRACTICE POINT

Many healthcare professionals find it difficult to have conversations with people about cultural needs and preferences and are concerned about making mistakes. This can lead to avoidance of these conversations and avoidance of engaging in learning to develop skills.

Engaging with Australian Indigenous peoples in a way that is respectful and acknowledges the health professional’s willingness to learn is very important.

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Key points for communication

Communication with Australian Indigenous peoples regarding serious illness, dying and/or death requires consideration of the following key points:

Appropriate terminology

Direct statements about dying and death can be inappropriate in many communities and Islands throughout the Torres Strait. This is related to the belief that talking about or showing images of dying / death can bring bad luck or bring death closer. These terms may also be triggering for those who are still grieving the loss of other loved ones or dealing with the impact of intergenerational trauma. In these instances, using the words sick person, bad / sad news, finishing up, passed on / away, Sorry Business are more appropriate.1

Who to talk to

When talking with a person and their family about healthcare, and particularly the end-of-life journey, it is important to remember that Aboriginal and/or Torres Strait Islander families are often collective or communal, rather than individualistic. There may be a family spokesperson or decision-maker who is not the sick person. Alternatively, the sick person may choose to become an active participant in their ongoing care decisions. Asking the question, “Who would you like us to talk to about your health matters?” can help to clarify this. It is also important to find out who the family would prefer is notified in the event of the person’s death (eg, Elder, Marigeth, family spokesperson)1

Eye contact

Some people will avoid eye contact when communicating, others will not. Avoiding eye contact can be a polite act between people of the same cultural group, when speaking with a person who is respected, of the opposite gender, or where there is a difference in ages. It can also mean that a person is feeling uncomfortable or afraid. Interactions should be guided by the person and the family spokesperson; if they avoid eye contact, then it is respectful for you to do the same.

Silences

Some people are comfortable with periods of silence during discussions. If this occurs, there is no need to talk through or rushing these silences, as they allow time for processing information and thinking about the implications when responding to questions. Sitting, listening and being patient is a sign of respect and will help build trust.

Personal space and body language

Interactions will flow more freely for many people when more personal space is allowed and the person speaking with them is sitting alongside them, rather than directly opposite, and from the same level rather than standing over.1

Download a printable version of this information here.

Clinical yarning

Clinical yarning is a person-centred approach that brings together Australian Indigenous cultural communication preferences with the important aspects of healthcare conversations. It is a way of communicating that is culturally-secure, and encourages active listening, helping to build a trusting relationship.

The clinical yarning framework talks about three types of yarning:²

• The social yarn: showing an interest in the person (not just their health or care needs), developing relationship, finding common ground or connection, having a two-way exchange – sharing of life experiences
• The diagnostic yarn: hearing the person’s health story, using open-ended questions, allowing silences, interpreting their story through a clinical lens
• The management yarn: providing direct, ‘straight-up’ health information, that uses stories and metaphors as tools to help the person and family understand a health issue so that a collaborative management approach can be adopted.

Examples of what to do or say:

Social yarning

The way you approach the social yarn will depend on how well you know the person and their family already Ask the person and their family about how they are, and what has been happening lately Acknowledge that this has been a hard time Remind them that you are there to provide support.

Diagnostic yarning

Find out what their concerns are by asking open-ended questions (eg, What worries you most about…? or What is your biggest concern at the moment? Listen well and check to make sure you have understood correctly (eg, If I’ve heard you right, it sounds like you’re worried about…).

Management yarning

Find out how much the person and family want to know before providing information (eg, Some people like to know everything that is happening or is likely to happen, others don’t want to know too many details. What would you prefer?) Give information in small chunks, at the person’s pace Be honest, clear and to the point Use stories or metaphors to link what the person already knows with information about the illness and management Use pictures or sketches to help explain or reinforce verbal information Check that they have understood the information by going over key points Give culturally-appropriate resources (eg, printed information, audiovisual resources) to support understanding Remind them that you are there to give support (eg, I will do everything I can to help you in whatever happens in the future).

Stolen Generations

It is important for specific consideration to be given to providing care for Aboriginal and/or Torres Strait Islander peoples who were victims of the Stolen Generations. Two-thirds of these survivors now live with a disability or chronic health problem, and many are now entering aged care. Supportive interaction with survivors and their families requires recognition of the trauma they have experienced. Fact sheet resources are available from the Healing Foundation to support health professionals with communication.⁷

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Learning resources

There are many resources to support the development of culturally-responsive communication in the context of providing palliative care to Australian Indigenous peoples.

An outline of the various learning resources and the key content they cover is provided in the ‘Related Links’ section below.

Booklets and Guides:

Cultural considerations – providing end-of-life care for Aboriginal peoples and Torres Strait Islander peoples (IPEPA)1 Sad News, Sorry Business: guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying (Qld Health)3 Shared decision-making model6

eLearning Modules:

Introduction to Aboriginal and Torres Strait Islander Palliative Care and Cultural Practice4 Safe Communication eLearning Module4 Clinical Yarning Modules5

Key Video Resource: Tom’s Story (Part 1) with expert commentary (8:12)

In this PCC4U Case Scenario video, ‘Tom’ is a 55-year-old Aboriginal man with advanced lung cancer and multiple metastases. He has collapsed at home and taken to hospital by ambulance. He is admitted to the ward, extremely breathless. His disease is now end-stage. Tom’s wife Cec and their son Jimmy are with him in the ward and Sarah, the nurse, is caring for them. She is worried about Tom’s pain and breathlessness, and asks Nancy, the Aboriginal Liaison Officer for some advice on caring for Tom and his family.

This video has actors playing the various roles in the case scenario with expert commentary regarding the interactions added.

Check the thinking points below for some questions to consider with regard to this video.

An advance care plan allows a person and their family to make decisions about future medical treatment and other care while they are still competent and able to communicate their wishes. Advance care plans are helpful for everyone – patient, family, community and the healthcare team. When someone has a clear plan for how they want to be cared for, the end-of-life experience is better.

The benefits of advance care planning are:

• The person continues to have a say in their healthcare even if they’re too sick to speak for themselves
• The person will have peace of mind, knowing that they are more likely to receive the medical treatment and other care that they want, and not receive the treatment that they don’t want
• Family and friends are relieved of the burden of having to make decisions without knowing what the person would have wanted
• Talking about these things can help to strengthen the relationships that people have with their family and friends.¹

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Key Video Resource – Finishing Up: Advance Care Plans on Groote Eylandt (16:12)

This video resource tells the story of how the Anindilyakwa people of Groote Eylandt in the Northern Territory have embraced advance care planning, supported by local healthcare professionals who have worked with them in a culturally safe and responsive way.

Check the thinking points below for some questions to consider with regard to this video.

PCC4U Core Module 3: Assessing and managing symptoms provides detailed information about assessment to determine a person and their family’s physical, emotional, social, cultural and spiritual needs. Management of symptoms in palliative care is focused on providing comfort and supporting the best possible quality of life.

Common symptoms that people can experience include:

• Pain
• Breathlessness
• Fatigue
• Nutrition and hydration problems
• Delirium and confusion.

Medication

For many Aboriginal and/or Torres Strait Islander people, the end-of-life journey is an important spiritual time; their focus may be on passing on cultural knowledge to family and community members. There is often a desire to stay alert in order to spend time with people, especially as many people – family, friends and community members – are visiting to pay their respects.

For this reason, there can be a reluctance to take strong analgesics, such as morphine (which is often used to manage pain and breathlessness) due to the possible side-effects of becoming tired, drowsy or confused. Concerns about becoming addicted to pain medications can also be common.

Information to help Aboriginal and/or Torres Strait Islander people understand morphine, and how and when it is used, is important to provide. For example: Understanding morphine – Cancer Council Qld¹

It is important for healthcare professionals to be aware of possible nonverbal signs of distress and pain as this might not always be communicated verbally by Aboriginal and Torres Strait Islander peoples. There can be a reluctance to ask for help, fearing that they would be “too much trouble” for staff. They may also be worried about sharing personal information with staff. IPEPA Cultural Considerations²

Asking direct, open-ended questions, and giving the person time to answer can be helpful, such as:

• It looks to me like you’re in pain. Tell me about the pain?
• You seem worried. What’s worrying you?
• Is there anything you’re worried about at the moment?

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Key Video Resource: Tom’s Story (Part 2) with expert commentary (6:09)

In this PCC4U Case Scenario video, the story of Tom and his family continues. Sarah and Nancy go to see Tom together. They talk about using morphine to help manage Tom’s symptoms. Tom and his family talk about what is important to them.

Check the thinking points below for some questions to consider with regard to this video.

 

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The multidisciplinary team

Many different members of the healthcare team are involved in providing palliative care for Australian Indigenous peoples. These include palliative care specialists, general practitioners and other medical specialists, nurses, care workers, and allied health professionals, such as physiotherapists, occupational therapists, social workers, psychologists, pharmacists, paramedics and speech pathologists.

Traditional healers (also called Ngangkari or Maparn) may also be involved in the care of some Aboriginal and/or Torres Strait Islander people. More information about traditional healing is included in Activity 16.

Traditional language interpreters, working with the family spokesperson, may also be involved in providing care, particularly with supporting advance care planning conversations.

Local support networks that the person and family are already connected with in their community, such as an Aboriginal Medical Service or Community Controlled Health Service, will also be involved in providing palliative care. Maintaining open communication with all the various members of the healthcare team is an important part of ensuring continuity of care for people, especially across transitions of care – between home / community care, hospital and/or residential care facility.

Aboriginal and/or Torres Strait Islander health professionals

If available, the services and support Aboriginal and/or Torres Strait Islander health workers and practitioners should be offered in providing palliative care. They play a vital role in helping people navigate the healthcare system, providing cultural brokerage and supporting family liaison. These professions are integral to the delivery of culturally-safe and responsive care. They can play an important role in helping to ensure cultural considerations are incorporated into care, particularly at end of life.

A significant barrier to accessing palliative care for Australian Indigenous peoples is the Western ‘medicalisation’ of dying and death. Many people would prefer to avoid healthcare institutions, particularly hospitals, during the end-stages of life due to the lack of consideration given to cultural practices, customs and Lore regarding the end-of-life journey by non-Indigenous healthcare professionals.

Only a few decades ago, many Aboriginal and/or Torres Strait Islander people considered the end-of-life journey to be sacred business and would not speak of dying or death outside of their communities. The mismatch between Australian Indigenous peoples’ beliefs and the Western / medical understanding means that there is a reluctance to trust non-Indigenous healthcare staff with what is considered a sacred or spiritual time.¹

The building of trust through consistent, long-term relationships between healthcare services and communities, that are inclusive and respectful of Australian Indigenous peoples’ cultural practices is an essential requirement for providing quality palliative care.²

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Key Video Resource – PCC4U/IPEPA Yarn: Cultures, beliefs and the end-of-life journey (5:34)

This video excerpt (also part of Activity 4) provides a perspective on the diversity of cultures and beliefs around the end-of-life journey for Australian Indigenous peoples.³

Check the thinking points below for some questions to consider with regard to this video.

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Learning resources

Learning about cultural considerations is important for all health professionals. There are many resources available that can support learning in this area.

An outline of the various learning resources and the key content they cover is provided in the ‘Related Links’ section below.

Booklets and Guides:

Cultural considerations – providing end-of-life care for Aboriginal peoples and Torres Strait Islander peoples (IPEPA)4 Sad News, Sorry Business: guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying (Qld Health)5

eLearning Modules:

Gwandalan Palliative Care eLearning Modules:6 Introduction to Aboriginal and Torres Strait Islander Palliative Care and Cultural Practice Supporting Choices at End of Life Strengthening Partnerships

Traditional healing

Traditional healers, also called Ngangkari (Central Australia) or Maparn (Kimberley region) may also be involved in the care of some Aboriginal and/or Torres Strait Islander people, particularly at the end-of-life. The skills of traditional healers come from a lifetime of being immersed in cultural ways of being, with knowledge being handed down from one generation to the next. Their role and influence cannot be easily translated into the Western medical understanding of health and wellbeing. Traditional healers use techniques such as observing, listening and touch / massage. They may also use bush medicines and ointments made from local plants.⁷ Further information about the role of traditional healers is available in the video, Where traditional and modern medicine meet.

Returning to Country

Returning to Country may be complicated if a person is on intensive therapy, such as dialysis or receiving specialist palliative care. The desire to return to Country may be more important to the person than the treatment of their disease. Working in partnership with primary healthcare services, the family and community is important at this time to investigate possibilities.⁵ For many Australian Indigenous peoples, the need to return to Country or Island at the end of life is of great importance. Remember that the person’s Country can be in a city, a rural town or a remote area. Spiritual and cultural beliefs around life as a continuum – Life-Death-Life (as discussed in Section 2) are common; at the time of death, the spirit leaves the body and returns to the Ancestors’ Country.

Even if a physical return is not possible, being connected to Country at the time of death is very important for many people. Experienced health professionals who care for Aboriginal and/or Torres Strait Islander people during their end-of-life journeys, report a range of ways that they ‘bring Country to people’ if a physical return to Country is not possible. These include:

• Use of technology to brings the sights and sounds of Country to the care facility (eg, campfire, running water, ocean / waves, images of the land, waters, sky/stars etc.)
• Having family bring in soil, rocks or leaves from the person’s Country and keeping it in a jar beside their bed
• Using videoconferencing to allow people to see and speak with family who are on Country.¹

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PRACTICE POINT

It is important to note that many Aboriginal and Torres Strait Islander people do not live on traditional Country. This does not diminish their cultural and spiritual connection to Country. It is helpful to ask if a return to Country is something that is an important part of the person and family’s end-of-life journey.⁷

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Key Video Resource – ‘Passing On’: ECU Scenario (4:54)

This scenario, inspired by the real stories and experiences of Indigenous people, shows the experience of an Aboriginal family whose father is dying in hospital. The interactions they have with the nurse provide important points for reflection.⁸

Check the thinking points below for some questions to consider with regard to this video.

A sense of acceptance, love and support is integral to the end-of-life journey for sick people. IPEPA Cultural Considerations¹

Before passing

Healthcare professionals and services need to be mindful of a number of practices / rituals in relation to this, including:

• The gathering of family and community is a practice that shows the respect that is associated with the person’s value to the community. Many people will come from long distances to help and support the person and their family during the end-of-life journey
• In many communities, it is not acceptable for a person to die alone. The family may request that someone be allowed to stay with the person at all times, including during clinical / personal care and overnight. It is important for health services to consider ways to accommodate larger family groups and to support the need for someone to be with the person at all times. Providing larger rooms for family to gather, providing rooms with outdoor access, and offering flexibility in visiting regulations, while still respecting the needs of other people and their families are all important strategies.
• In the days before passing, the person may receive spiritual visitors, perhaps Ancestors or other family members who have already passed. These visits usually bring peace to the person and the family who are with them, and should not be confused with delirium
• Torres Strait Islander people may mimic or simulate their totem (animal or bird) during the last days.¹

After passing

Reaction to loss is highly individual and experienced differently by every person. After a family or community member has passed on, some family and community members may:

• Continue to talk to the person throughout their journey
• Call the spirit home by singing or dancing
• Wail or cry loudly (women)
• Become quiet and not want to talk
• Get angry and blame someone for the loss
• Want to stay near the person’s body
• Commence preparations for the body and spirit’s transition
• Use comfort measures like prayers.

After death, a smoking ceremony may be conducted which involves smoking of the deceased person’s belongings and home to assist with the spirit’s journey to the Ancestors. This is a sacred ritual and may not be discussed openly with healthcare staff. However, it is important that this, and any other cultural practices, are supported, allowing time and space for the family / community. In some Aboriginal communities, it is important after a person’s passing for Elders to identify the causes of death. These are usually of a spiritual nature and will not be discussed openly.²

If a person dies and they are not on their own Country or Island, there is a belief that their spirit can be hindered from returning to Country and becomes ‘stuck’ in the place of death. A smoking ceremony can be performed by the Traditional Custodians of the Country where the person died. It is a ritual that helps a person’s spirit to be released for the journey back to their own Country.¹

 

Communication after passing

In both Aboriginal and Torres Strait Islander communities, the deceased person’s name is not mentioned nor are images / videos of them shown, based on the belief that to do so will call the person’s spirit back and prevent safe passage to the spirit world of the Ancestors. For some families, this is not a concern – as with all cultural considerations, it is important to ask the family what they would prefer. Clarifying this before the person passes is helpful.1 Contacting the next of kin following the death may not be correct practice when caring for either Aboriginal and/or Torres Strait Islander people. Seeking cultural guidance from the Aboriginal and/or Torres Strait Islander health professional involved with the family / community. It is culturally inappropriate for a non-Indigenous health professional to contact and inform the next of kin of a person’s passing. This breach of cultural protocol may cause significant distress for Aboriginal and Torres Strait Islander families connected to the person who has passed. In the Western Island group of the Torres Strait, cultural protocol will require certain in-law relatives to assume a role known as the ‘Marigeth’ (Spirit Hand). This role supports the grieving family by caring for the needs, informing family (immediate and extended) of the person’s passing, acting as family spokesperson (communication in and out) and coordinating funeral arrangements. Sad News, Sorry Business2 It is also important to be mindful of any Aboriginal and/or Torres Strait Islander staff who may be related to the deceased. They should be allowed to be notified of the person’s passing by the appropriate cultural protocols, and supported to attend funerals and other cultural rituals as members of the family / community.2

Sorry Business

Sorry Business is the term that many Australian Indigenous peoples use to refer to grief and bereavement. It can also refer to a period of cultural practices and protocols associated with death. Sorry Business acknowledges that the grief experienced from a loss affects the whole person, including their mind, spirit and body, as well as the relationships they have with other people.³

In some areas, both in urban and rural / remote, the whole community will experience grief and mourning after someone has died, and some businesses may close for a period of time out of respect for the loss. Cultural duties for the extended family following a death include supporting the immediate family as well as looking after those who have come to mourn and pay their respects.²

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Key Video Resource – Final Footprints: Palliative Care Australia (11:38)

This video provides some guidance on ways to approach interactions with Aboriginal and/or Torres Strait Islander people about dying and death. It supports learning about the cultures and traditions of Australian Indigenous peoples, particularly with regard to the end-of-life journey, and how healthcare professionals can contribute to supporting these.⁴

Check the thinking points below for some questions to consider with regard to this video.

Palliative care is a way of caring for people with life-limiting illness that focuses on quality of life with a holistic, and person and family-centred approach. To review the key principles of palliative care and relevant national standards, refer to Module 1, Activity 13.

People affected by life-limiting illness often have complex needs that can be better met through the collaborative approach of a multidisciplinary team (MDT), than by individual health professionals working in isolation.[1]

Providing a multidisciplinary approach strengthens the provision of palliative care.[2]

The benefits of a multidisciplinary approach to care include:

• Increased satisfaction with care for the person and their family – a person’s goals of care are more likely to be achieved with a multidisciplinary approach to care
• Greater likelihood of care being provided in accordance with national standards and clinical practice guidelines
• Improved access to information and practical support for the person and their family
• Increased opportunities for health professionals involved in providing palliative care to support each other in managing the emotional aspects of this work.[2]

It is important that the care is coordinated, usually by a senior member of the MDT, to ensure that decision-making is timely, and that the various members of the team are aware of their roles and responsibilities in providing care.[3]

Not all people affected by life-limiting illness will need the support of a specialist palliative care team. They can be managed in the community by general practitioners and a primary health team, or in hospitals by other speciality teams (eg, cardiology, respiratory etc.). These non-specialist teams though are still multidisciplinary in nature. When palliative care needs are complex, the specialist palliative care team can be involved in care, either directly or in providing consultation and liaison services to the MDT.[4]