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Communicating well is at the heart of palliative care, and a key part of helping a person and their family deal with the effects of life-limiting illness. Effective communication across diverse groups, requires care that is responsive to the person’s cultural background and individual needs.

If you have not already completed PCC4U Module 2: Communicating with people affected by life-limiting illness, please review the key principles for communication in palliative care before continuing with this content.

Intercultural communication shares information between people of different cultures where language, cultural background, and beliefs and values differ. Intercultural communiction can be challenging due to possible misunderstanding of the words that are used, or various aspects of nonverbal communication. It is important for health professionals to consider ways to support verbal or written communication to enable understanding. [1]

Effective intercultural communication requires consideration of:

• Communication styles and nonverbal communication
• Ways that emotions are expressed
• Use of humour
• Topics that are considered appropriate or not appropriate to talk about
• Silences in conversations
• The amount of information people can cope with in one conversation.

It is always advisable to ask rather than make assumptions about what is or isn’t appropriate. The Patient Dignity Question is helpful to consider when interacting with anyone affected by life-limiting illness, and especially with individuals from diverse backgrounds. It can be used to identify needs and plan care:[2]

“What do I need to know about you as a person to give you the best care possible?”

 

The PEPA/IPEPA Communication Guide: Supporting access to palliative care for everyone is a valuable resource to support culturally-responsive communication. Some key questions that health professionals are encouraged to consider in approaching a conversation about palliative care are covered in this resource, including:[1]

How does the person like to be addressed? What kinds of spiritual practices are important to them? Is showing respect for Elders important to them? Do we think of time in the same way? What do they believe about preventative health and the causes of serious illness? Are there gender preferences that I should be sensitive to? How are their past experiences of the healthcare system influencing their choices now? What behaviours or actions might seem impolite to them? Can I talk openly about serious illness, dying and death? What words should I use? What will I share about myself to make a personal connection and build trust? Is the language I’m using inclusive of people of all sexualities and gender identities? Who would the person like to be present for the conversation? What aspects of nonverbal communication do I need to think more about with this person and their family? Are my clothing and appearance demonstrating respect? Do we need interpreter assistance for this conversation? What can I do to help this person feel safe, listened to and cared for?

 

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Working with interpreters

If English is not the person’s strength in communication, it is helpful to find out if there is another person in the family who can support communication. This can be helpful for day-to-day conversations. However, professional interpreter assistance should always be arranged for the first conversation with a person and their family, and any further discussions focusing on illness progression, prognosis, and decision-making regarding care options.[1]

The Translating and Interpreting Service (TIS National) is an interpreting service provided by the Australian Government, Department of Home Affairs for people with limited English proficiency and for agencies and businesses that need to communicate with their non-English speaking clients. Interpreters provide face-to-face, videoconferencing and over-the-phone interpretation throughout Australia.[3]

Interpreters experienced in healthcare will often have an understanding of clinical terminology. However, they may not have skills in conveying bad news. Information can be altered or poor prognosis not interpreted  in delivering messages. Confidentiality can also be an issue where they are a part of a small community or they know the person and their family.[4-5]

When engaging an interpreter to assist with communication, the following principles should be considered:[4-5]

Principles for working with an interpreter

Inform the interpreter service of the nature of the meeting, gender and/or age preference, especially if sensitive matters will be discussed, and provide brief information on the person’s condition Speak with the interpreter prior to the meeting to gauge their understanding of the terminology and concepts that will be mentioned during the conversation Introduce the interpreter to the person and their family, and explain the role of the interpreter as a non-clinical member of the healthcare team In a face-to-face meeting, interact directly with the person and family – not the interpreter, and use direct speech Speak clearly, use plain language and explain any complex concepts and terminology Speak at a resonable speed, with appropriate pauses and avoid overlapping speech Clarify information with the interpreter regularly throughout the conversation Ask the person and their family about their understanding and thoughts on new information and allowing time for a response Allow time at the end of the meeting for any questions or concerns to be raised Debrief wtih the interpreter afterwards if possible and exchange feedback. Offer support to the interpreter if the nature of the conversation was distressing.

Family and friends, and especially children, should not be used in the place of professional interpreters. Asking a person who has not been professionally trained as a healthcare interpreter can result in inaccuracies in information provided, altered or distorted information being provided and suppression of information possibly related to ‘truth telling’, breaches of confidentiality, and invalid consent processes.[4, 6]

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Resources to support communication

There are numerous resources available to support healthcare intercultural communication. These include:

• CALD Assist App: a free app to assist clinicians to communicate with people with limited English proficiency
• CareSearch – Resources in your language: end-of-life-care communication in different community languages
• Communication Cards: From the Centre for Cultural Diversity in Ageing
• Health Translations: A free library of Australian multilingual health and wellbeing information funded by the Victorian Government
• Advance Care Planning Australia – Other Languages: Access advance care planning information in other languages.

Person and family-centred care

Person and family-centred care is respectful of, and responsive to, the preferences, needs and values of people and their families and communities.[1]

Care that places the whole person and their family at the centre is important. This means people are listened to, informed, respected and their wishes are honoured throughout the healthcare journey. The relationship between the person, their family and the healthcare team can be greatly strengthened by encouraging two-way communication so that everyone knows what is important, and can be working together to make decisions about care. For example, special considerations for visitors might be needed to allow space for larger family groups and access to the sick person whenever needed. There may also be considerations around family members providing care.

Best practice is to ask the person and family about needs and preferences, rather than make assumptions.

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Shared decision-making

When talking with a person and their family about healthcare, and particularly the end-of-life journey, it is important to remember that people from culturally-diverse backgrounds may have a collective or communal approach to decision-making, rather than individualistic view. There can be an Elder, family spokesperson and/or other leader who takes responsibility for decision-making about the person’s healthcare. Some people from culturally-diverse backgrounds are active participants in their ongoing care decisions.[2]

It is important to ask about this to help clarify their preferences (eg, “Who would you like to be involved in conversations about your healthcare?”).

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Trauma-aware, healing-informed care

In all of the groups that are included in the underserved populations and those living with vulnerability (Activity 1), there is an increased likelihood of having experienced trauma. This can be the result of discrimination, marginalisation, or directly related to experiences of abuse. Approaches to care that are helpful include: [4]

• Trauma-aware care: a framework for service delivery that is based on knowledge and understanding of how trauma affects people’s lives, their service needs and service usage
• Healing-informed approaches: focus on safety, choice, collaboration, trust and empowerment. These approaches can be used in interactions with all people but are of particular benefit to those affected by trauma.

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Disclosure of challenging information

Preferences for information giving, relating to diagnosis and prognosis, can be influenced by cultural background and family experiences. For example, withholding information can occur where the family hold beliefs that giving a person bad news can be emotionally harmful and could hasten death. Other reasons that families choose not to disclose information about serious illnes, dying and death are that it is considered to be disrespectful, it could cause the person to lose hope, or that it could hasten death.[5]

Strategies to support communication in this situation include:[5-6]

• Involving the person with a life-limiting illness in a decision about how much they would like to know
• Providing information to families about the stages and progression of the life-limiting illness
• Providing education to care teams about reluctance to disclose information and the impact this can have on the person with a life-limiting illness.

A review of the barriers to accessing palliative care that are experienced by some groups has also identified a number of enablers of quality palliative care:[1]

• Increasing community comfort with discussing death and dying
• Promoting community awareness and understanding of palliative care
• Facilitating timely initiation of palliative care
• Fostering a greater understanding of the needs of underserved populations
• Improving communication and information provision
• Enhancing provision of person and family-centred care
• Better supporting advance care planning.

As previously described, providing person and family-centred care is an important way to support access to palliative care for people from culturally-diverse backgrounds. Strategies to support this include:[2-3]

• Enhancing the capacity of health services to deliver palliative care that is flexible, individualised and delivered in the person and family’s setting of choice
• Ensuring that the care facility or setting is appropriate for all populations, including physical access, accommodation options, artwork, signage etc
• Respecting the role of families and communities in decision-making and provision of care
• Ensuring that organisational policies, structures, systems and cultures are inclusive and support person and family-centred care
• Ensuring that staff are formally trained in being culturally-responsive to the needs of all communities.

In addition to this, providing trauma-aware, healing-informed approaches to care further supports access to palliative care. This includes consideration of: [4]

• Ensuring that the physical and psychological safety of the person and their family is addressed
• The person and their family have choice and control
• Making decisions in collaboration with the person and their family and sharing power
• Establishing consistent boundaries and being clear about what is expected with regard to tasks
• Focusing on the person and their family’s strengths and empowering them to build on the skills they have to manage care and make decisions.

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.

Cultural influences

Some people have strongly held beliefs about the causes of illness and ways to stay healthy. These beliefs can appear to conflict with a Western biomedical understanding of the illness. People can also be using traditional or alternative medicine to promote health or treat illness. Demonstrating respect for diversity of beliefs and cultural practices can help to build trust and establish rapport.[1]

Concepts of health and illness can impact on a person and their family’s perception of symptoms, especially pain. For example, some people believe that pain can be a punishment for past wrongdoings. Others believe that a person’s response to pain impacts on their experience in the afterlife. Severity of pain and other symptoms can be under-reported. For many families, the end-of-life journey is an important spiritual and cultural time. There is often a desire to stay alert in order to spend time with people and pass on important cultural knowledge. For this reason, there can be a reluctance to take strong analgesics, such as morphine due to the possible side-effects of becoming tired, drowsy or confused. Concerns about becoming addicted to pain medications can also be common.[2-5]

In some families, management of symptoms can involve the use of certain foods, natural products, medicinal herbs and traditional healers. Effective communication and explanation of available management options is important to support informed decision-making. Information regarding medication and management options need to be in a format and language that the person and their family can clearly understand and is culturally-appropriate.[3-5]

Relations between genders can differ between groups. For example in some families, it is not appropriate for men and women to make physical contact or discuss certain health matters. Respectfully asking about this will help the person and their family feel more comfortable with the care provided.[1, 5-6]

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Culturally-responsive communication

Maintaining open conversations is a helpful way to support quality care. Asking direct, open-ended questions can be helpful, such as:[1]

• It looks to me like you’re in pain. Can you tell me about how you are feeling at the moment?
• You seem worried. What’s worrying you?
• I’m interested to find out what you know about your illness and what you do to stay healthy?
• What kinds of things help you when you are in pain?
• What do you know about the pain medicine that you have been prescribed?
• Some patients worry that if they take the pain medications, they will become addicted. Do you have this worry?
• Some people prefer to be cared for a by a member of the same gender. What is important to you?

PCC4U Core Module 2: Section 5 provides an overview of spiritual needs and ways to support qualtiy care. Providing culturally-responsive care to people from diverse backgrounds requires consideration of the person and their family’s cultural, spiritual and/or religious beliefs.[1] Talking about spiritual issues and the search for meaning is an important part of holistic care.[2]

For example, in cultures where eating traditional food and gathering to eat with family, friends and community are important, people may express sadness at a person’s loss of appetite or reluctance to eat or drink. Family members may want the perosn to have artificial nutrition if they are no longer eating or drinking. [3] Sensitively discussing changes in the body through the last days of life can help families to understand the reasons for this.[4]

Conversations with the person and their family about their preferences for spiritual care, especially during the end-stages of life, are important. It is also important to consider loss, grief and bereavement and the many different ways that grief is expressed. Factors such as age, gender, social, emotional, spiritual and cultural background impact on an individual’s response to loss and expression of grief.[5]

When supporting families dealing with loss and grief, it is important to continue to have an approach that focuses on open and respectful communication, including:[6]

• Listening respectfully while people talk through and make sense of what has happened
• Giving people space to talk about and express a wide range of emotions, without judgement
• Offering support that fits with individual needs – some people will appreciate more help and more frequent opportunities to talk, while others can find it intrusive.

End-of-life care planning

End-of-life care planning and decision-making should include and respect the wishes of the individual, the family and the community. [1] However conversations about advance care planning and  documenting advance care directives can be challenging for people from cultural groups where dying and death are not openly spoken about. Decisions about life-sustaining measures or withholding treatment can be difficult for families to make.[2] Parents and families of children with a life-limiting illness can find it particularly difficult to speak truthfully and openly to children about their illness. [3]

Multilingual resources on advance care planning are available on the Advance Care Planning Australia website.

End-of-life care

In some cultural groups death is considered to be a natural part of the life cycle, while others see it as unnatural and a sign of weakness. These beliefs influence the way people would like to say goodbye to their families at end of life.  Some will insist that many family and other members of the community are given the opportunity to say goodbye, where others want discretion so as not to draw attention to them or the illness.[3]

Preferences in the place where end-of-life care and death occurs also varies between individuals and families. For some people, the place is not important as long as family can remain with the person. For others, it is important to be at home to return to a certain place to die.[2] Healthcare teams work together to support the values and wishes of the person and their family as much as possible.

Cultural practices surrounding death and bereavement

Strong community involvement may be pivotal to a person’s culture. A person’s care can involve and be carried out by family, relatives and people in the surrounding community. Members of the community may also mourn together. [4] Prior to and at the time of death, families may want to carry out cultural or religious ceremonies or rituals. These ceremonies and rituals can include family members bathing and dressing the person after death. [5]

It is important to consider cultural protocols and practices that are important to the person and family after death, and to ask about these in a sensitive way. For example, in some cultures it is important that no one outside of the family or community touches the person after they have died. Completing a verification of death though will require a member of the healthcare team to touch the person’s body. Explaining what is required and ensuring that this is understood is an important part of maintaining a trusting relationship.

Some families may express their grief openly and loudly. Providing space for this, without disrupting other people being cared for, is important. [6] Acceptance by health professionals and care staff of cultural differences and practices is important and is supported by, communicating directly with people and their family, and recognising and respecting beliefs surrounding customs, rituals and preferences. [7]