Communication approaches

Key messages

Evidence summary

Communication approaches are recognised as an integral component for improving quality of life for palliative care patients, their families and carers. [1] Health professionals are usually responsible for leading communication about palliative and end-of-life care in clinical settings. [2] However, challenges may often arise due a number of complex topics needing to be covered, including:

• Talking about death and dying
• Talking about prognosis
• Breaking bad news
• Discussing goals of care
• Supporting and involving family carers
• Eliciting values
• Providing emotional support
• Preparing for the future
• Initiating advance care planning
• Engaging shared decision making. [2]

All health professionals, including generalist palliative care providers, need to be equipped to effectively deliver accurate prognostic information, and assess that patients and family carers have comprehended the information received. [3-6] The skilful use of open-ended questions in palliative care conversations, which should extend beyond treatment wishes and limitations, is important for gathering a comprehensive insight into the patient’s values, wishes and needs. [7] An example of this may include, ‘is there anything else you would like to mention? [6] However, breaking bad news truthfully is a difficult task and requires forethought, skill and time. Health professionals report a sense of helplessness when they have less experience in palliative care, or little support from colleagues within an incompatible system and work culture. [8] Personal maladaptive coping strategies may include professional distancing and the use of euphemisms when discussing death and dying with patients and families. [8]

Promoting personal reflection and sharing of the experiences encountered in end-of-life care, especially modelled from senior colleagues, may contribute to an improvements in doctors’ competence and reduce , feelings of failure and avoidance in practice. [9] To facilitate stronger communication between patients and families, health professionals working in hospital settings should be trained to integrate essential practices into their routine hospital rounds, such as listening to the patient’s and family caregiver’s concerns about the patient’s medical condition, clarifying their end-of-life care values, and developing an end-of-life care plan and goals. [10]

Patients’, families’ and carers’ attitudes and beliefs can influence how they talk about death and dying, and emotional processes like mutual protective buffering (which inhibits self-disclosure) or the avoidance of strong emotions can hinder open discussions between family members. [11] Helping families to share their end-of-life related concerns may enhance the feeling of being supported, reduce the sense of loneliness and isolation, and affirm family bonds. [11] Accordingly, patients, families and carers appreciate health professionals paying attention to who they are as a person, and the process they are going through. [12] Most people express a desire to be informed honestly and openly about the prognosis, which can bring a sense of security. [12] However, patients, families and carers may also preference a sensitive process of uptake and coping with information, because these disclosures can sometimes induce fear, stress and existential disruption. [12] For effective communication, families and carers prefer empathy, clear and understandable language, leaving room for positive coping strategies, committed health professionals taking responsibility, and recognition of their role as the carer. [12]

Clear, evidence-based communication frameworks can enhance communication between the health professional, patient and family carers in palliative care practice, particularly around sensitive and complex issues. [1,13,14] Family conference interventions may increase the length of end-of-life conversations in some situations, and a structured serious illness conversation guide might lead to earlier discussions between patients, family carers and health professionals. [15] Core elements of serious illness conversations include (1) having clear intentions and framing; (2) establishing expectations and directions; (3) exploring the current situation and possible trajectory; (4) uncovering matters of importance; (5) elucidating preferences and priorities; (6) and supporting preparation and recommendations. [1,16] These components can be adapted and altered depending on the intended purpose of the conversation. New interventions tested for their potential to improve prognostic understanding are also emerging, which hold the potential to improve informed decision making. [17]

Equity and access

Culture impacts how people communicate around prognoses and death, and frank conversations are prohibited in some contexts. Some people do not want to talk about death and dying because it is taboo and disrespectful, families may seek to protect loved ones and not take away hope of recovery, or wish to seek supports before telling patients. [5] Social interaction hierarchies must also be considered, including spoken and unspoken forms of communication such as ‘metaphors or storytelling’, emotional cues and identification of respected individuals to consult within the family. [5]

Skilled medical interpreters are essential to providing culturally sensitive palliative care and addressing healthcare disparities for patients from culturally and linguistically diverse backgrounds. [18] They play many roles when interpreting palliative care discussions, including interpreting language and meaning, acting as a cultural broker, and advocating for patients and families. [18]

Building trust is another integral component of effective communication in palliative care, which can be challenging to ascertain due to the lived experience of certain populations. When limited freedom is combined with other vulnerabilities, such as being part of an oppressed group, significant distrust toward institutions can occur. [19,20] People living in prison with palliative care needs have expressed a desire for respectful, compassionate and empathetic relationship with their health professionals that fosters shared decision-making through meaningful communication. [21] However, this can be difficult to achieve because the power differential, lower social capital and lack of agency of people in prison produces an imbalanced relationship that can hinder normal patient-clinician interactions. [21] Clear, timely and polite communication, which effectively conveys complex information, is important when people in prison wish to play an active role in their own care and helps them to feel validated and supported during illness. [21]

A lack of trust can also hinder palliative care communication efforts of health professionals with people who use drugs and/or alcohol. [22] A focus on living the ‘here and now’ may make conversations around goals of care and preferred place of death more difficult for these populations. [22] Paying attention to often difficult life stories can help assess end-of-life preferences and facilitate future planning. [22]

People living with an intellectual disability and/or serious mental illness have specific palliative care communication needs, which often go unmet. [23] Specialist palliative care professionals reportedly rely on family members to understand the patient’s care needs, which might help bridge the communication barrier, but can lead to becoming excessively dependent on them throughout the care trajectory. [23] Atypical communication methods can hamper palliative care staff, while health professionals working in mental health and intellectual disability services, alongside patient’s families, have a better understanding of optimal communication styles. [23] The potential for shared communication training between palliative care, mental health and intellectual disability teams has been recommended, where a stronger focus on non-verbal communication is required. [23]

Older LGBTIQ+ individuals report a fear of being open about their sexual orientation, while trans people face additional concerns about receiving care appropriate to and respectful of their gender identity during palliative care and after death. [24] The need for inclusive communication approaches, which adopt affirming care principles to prevent social isolation and feared discrimination and stigmatisation at the end of life, is pivotal for these populations. [24]

Care context

Support for families is a central tenant of palliative care, and communication in the context of families facing the challenging prospect of their child’s death is particularly important. The expectation for families to contribute to decision-making beyond their capacity, or exposure to information they are not yet ready to hear, has the potential to cause damage and negatively impact on experiences of grief. [25] Sensitive discretion is of upmost importance in these scenarios.

Ongoing discussion with families and carers of people living with dementia is pivotal to promote informed decisions, establish a partnership, provide emotional support and improve the relationships between family caregivers and their loved one at the end of life. [26] More than 50 percent of residents living in residential aged care homes in Australia have a diagnosis of dementia. [27] Family caregivers should be offered tailored programs and/or regular family meetings about dementia care at the end of life according to their specific needs to promote understanding about their relative’s health conditions, acceptance of the upcoming loss, and empowerment in facing challenging end-of-life-related issues. [28] Communication facilitators for nurses working in these settings include:

• Experiential time in the field
• Presence and rapport with residents and families
• Clinical competence
• Interdisciplinary teamwork
• Organisational flexibility
• Relational trust
• Rostering that promotes regular staffing patterns for continuity of care
• Ongoing, timely assessments of evolving conditions and prognosis. [29]

End-of-life discussions with families should be face-to-face, structured around a set of pre-defined topics, and supported by written information to educate and reassure them of care options at the end of life. [26]

Implications for families and carers

Effective communication is essential for families and carers in palliative care, helping them feel informed, supported and involved in decision-making processes. [12] Health professionals should provide clear and honest communication about prognosis and care plans, enabling families to prepare emotionally and practically for the future. [12] Open-ended questions and active listening are critical to understanding families' values, needs and concerns. [1,6] Involving families in discussions about care preferences and goals aligns the care provided with the patient’s wishes, improving the quality of care and ensuring families feel respected and heard. [16] Health professionals should facilitate these conversations by using evidence-based frameworks that guide serious illness discussions, ensuring clear intentions, exploration of preferences and support for decision-making. [1,16] Family carers often bear significant emotional and physical burdens, especially when caring for loved ones with conditions like dementia. [26] Providing them with tailored support, including regular updates, educational resources and emotional support empowers them and enhances their caregiving abilities. [28] Recognising the important role of family carers and involving them in care decisions strengthens their relationship with healthcare providers and improves overall care quality. [1]