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
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.
Key points for communication
Communication with Australian Indigenous peoples regarding serious illness, dying and/or death requires consideration of the following key points:
|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|
|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|
|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.|
|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.|
|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|
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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:
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
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.
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.
- Review the video, ‘Tom’s Story’ and consider the expert commentary:
- Reflect on your thoughts about the interaction and the comments made
- How have you felt when you have cared for a person whose cultural background was different to your own?
- Using the clinical yarning framework, rewrite one of the conversations between Tom and Sarah or Nancy to reflect the principles of the framework.
- What changes can you make in your approach to Aboriginal and/or Torres Strait Islander patients and families to improve communication?
- When you feel more confident in your communication skills, arrange to have some simulation or role play conversations with others who are also learning these skills. If possible, ask an Aboriginal and/or Torres Strait Islander health professional (or other healthcare worker who identifies as Aboriginal and/or Torres Strait Islander) to observe your conversations and provide their feedback.
- Ask to spend time with an Aboriginal and/or Torres Strait Islander health professional as they work with their clients and observe their communication. Discuss what you learn with another student or colleague.
- PEPA Project Team, Cultural Considerations: Providing end-of-life care for Aboriginal peoples and Torres Strait Islander peoples. 2020, Program of Experience in the Palliative Approach.
- Lin, I., C. Green, and D. Bessarab, ‘Yarn with me’: applying clinical yarning to improve clinician-patient communication in Aboriginal health care. Australian Journal of Primary Health, 2016. 22(5): p. 277-382.
- Aboriginal and Torres Strait Islander Cultural Capability Team: Queensland Health, Sad News Sorry Business: Guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying. 2015.
- Gwandalan National Palliative Care Project. eLearning Modules. 2021; Available from: https://gwandalanpalliativecare.com.au/elearning-modules/.
- Clinical Yarning Project. Clinical Yarning Education Modules. 2020; Available from: https://www.clinicalyarning.org.au/.
- Agency for Clinical Innovation. Yarning to make health decisions together. 2021; Available from: https://aci.health.nsw.gov.au/shared-decision-making.
- Healing Foundations, Working with the Stolen Generations: understanding trauma. 2019.