Communication with Patients, Carers, and Family / Communication / Nurses / Health Professionals

Communication to build relationships and provide holistic care

Related Resources

CareSearch Community - Why is communication important?
palliAGED Evidence summary - Talking about end of life
palliAGED Introduction Module for Aged Care - Talking about dying

People with a life-limiting illness should have the opportunity to discuss their condition, their prognosis, recent changes and what lies ahead. Nurses can help them understand and retain information, adapt to the changes and progression of the life-limiting illness, prepare them for death, and support people who may be struggling with bereavement.

These discussions can be difficult. Nurses can help the person and their family start and continue these discussions and make decisions about care. The person and their family may wish to have separate conversations. Carers may want or need different or more information than the person themselves. The following examples consider the needs of both.

Discussion might include:

how the illness may progress and any expected changes
how they are coping
what the person’s wishes and priorities are
the person planning to do certain things that are important to them whilst they are able
changes to the person’s activity and level of function
what care/help they may need now and in the future, and who is available to support them
available services
advance care planning – which is a process rather than a one-off event
where they would like to be cared for
where they would like to die which can change over time
symptoms and signs to report urgently and to whom.

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These discussions are not one-off but held over the course of the person’s illness. Discussion topics and decisions may change as needs change.

It can help to have an experienced nurse as a mentor who can model and teach skills of good communication.

Carers as part of the care team

Carers may need or want more information including practical information to help them as a member of the team providing care. It is important to discuss care with them and to acknowledge their role as a partner in providing care. However, they are not there as a health professional providing formal palliative care and this is also important to remember.

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Responsive communication

The focus of discussions will also reflect the evolving nurse-patient relationship:

initial period where the aim is to explore the person/family’s understanding of the illness, understand their coping and learning styles, and to approach advance care planning
ongoing period with a focus on assessment and monitoring, clinical care, and education about the illness for people who want this
terminal stage where the discussions might centre on support for transitioning to this end stage and saying goodbye.

Where care is provided by a number of nurses these relationships may differ. However, it is important to be prepared to step in at any time to have discussions about the person's care or concerns. Provide what information you can and offer to find out more and come back, or ask if they would like you to find someone to speak with them.

These conversations are not easy. They may start spontaneously as you are providing care. Many people look to health professionals to start these discussions. Others may hesitantly try to start these discussions with a question or a comment providing a “hint” at their readiness or need to talk. Others may not be open to or be ready for these discussions. End-of-Life Essentials gives examples of these conversations in the module: Communication and decision-making.

If you are unable to respond immediately to the person’s concerns, fears, or need for information, it is important to acknowledge these needs and if possible find someone else to speak with the person now.

Planned discussions give people time to prepare themselves and can help limit misunderstandings.

Communication tips

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Communication that is open, respectful, culturally safe, and comfortable enables effective conversations. This forms a key part of providing comprehensive care.

To support assessment, use your communication skills to:

actively listen and allow the person to express themself; this may involve periods of silence
ask open-ended questions, for example:

'What troubles you the most?'
'With what you know about your illness, what’s most important to you?'

paraphrase and summarise to check that you have understood correctly:

'What I hear you saying is that you have been experiencing … which has been making you feel … Have I understood that correctly?'

ask what information the person and their support network want to receive:

'Do you want to know the details of the [diagnosis] [care plans]?'
'Do you like to know exactly what’s going on?'
'Would you prefer that I talk with someone in your family?'

ask about the impact of any symptoms and what other factors influence this impact them:

'How have you been coping with these experiences?'
'I can see you are really concerned about ... Can you tell me more about that?'
'What are you (most) worried about?'
'Is it ok for us to talk about what this means for you?'

ask whether there are any other practical issues that might influence the choice of treatment, including cultural, spiritual, and geographical factors
ask the person about their current and intended place of care
document what is discussed and said so that all providers of care are informed.

For more detailed information go to End-of-Life Essentials resources to adopt and adapt.

Triggers indicating the need for discussion include:

when a life-limiting advanced progressive illness is diagnosed
when a treatment decision needs to be made
when there is a change in the person’s condition, or when the person, carers, or a health professional perceive a change
when a person seeks information about treatment options or to plan for the future
when a person moves to a residential aged care facility
if treatment is not working or there are complications from this treatment that limit its effectiveness
after a hospitalisation
when there is a change in the person’s social context (change within the family or affecting a carer)
when family or carers are distressed or overwhelmed
if there are requests or expectations that are inconsistent with clinical judgement
when the person is referred to a specialist palliative care service.

Preparation for a discussion can include:

finding a private space or making a space more private (e.g. closing a door, moving to a room or more private space, waiting for a space to be more calm/private, booking a meeting space)
limiting noise and external interruptions (people, telephone)
choosing a time when the person is comfortable, alert and their condition is stable
making the sure the person is mentally capable of taking part in the discussion (e.g. not confused, not distressed)
having a relative, friend or advocate present who makes the person feel more at ease
providing the person the opportunity to discuss things with and without others present
ensuring there is enough time to answer questions or repeat information so that it is understood – if not, make sure that another time is set
optimising any communication aids as required (e.g. hearing aids or an interpreter)
assistance for a person with cognitive impairment (e.g. a support person, a facilitator, information in a format that is accessible for the person, extra time to present information at an acceptable pace with time for the person to consider what they have heard and to express themself).

During care you should be aware of both verbal and non-verbal signals that you are communicating.

Verbal communication

introduce yourself and others in the room there to help
describe what you and other team members are going to do
ask permission before you begin
describe what you and other team members are doing
invite the person to ask questions
ask about their needs and goals, and any concerns they might have and acknowledge these
acknowledge the role of carer(s)
speak with a caring voice tone, paying attention to not speak too loudly or quickly

Non-verbal communication

respect the person’s privacy and dignity e.g. draw a curtain, close the door as appropriate
give the person your full attention
use eye contact where appropriate
nod your head to show you are listening but do not interrupt the person talking
when talking with the person, where possible, position yourself to be the at their level

use touch where appropriate – care and reassurance

A person’s health literacy levels (how people access, understand and use health information) should guide the way and the level of information that is provided to them. Assume low health literacy and use plain language and avoid clinical jargon and acronyms. Give information in small chunks, at the person's pace and ask them to tell you what they have understood.

Culturally appropriate communication pays attention to the person’s beliefs and practices about death and dying including family participation in decision-making, gender roles, communication norms guiding decision-making and the breaking of bad news, and rituals.

It may be necessary to involve interpreters, cultural liaison workers or advocates from the person's community to assist and ensure that the information is understood.

Using an interpreter

It can be helpful to prepare by checking that the interpreter

is acceptable to the person
is fluent in the person’s language and dialect
speaks fluent English.

Speaking to the interpreter about what is likely to be discussed to check that they are comfortable with this can help ensure that little or no shame or embarrassment occurs during the discussion.

When using an interpreter in palliative care, remember that:

face-to-face interpreter services are preferable to telephone services for conversations about palliative care or dying
you will need to allow time for the interpreter and the person to fully introduce themselves
the interpreter may need time to fully relay information in each direction
the healthcare professional should look at the person when speaking and listening (if culturally appropriate), and act as if it is the person talking
talking in small ‘chunks’ helps the interpreter and the person
sometimes there is no direct translation for words used in palliative care so these may need explanation for the person and the interpreter
it is important to check the person’s understanding or interpretation of what is said
the interpreter and the person should understand that the discussion is confidential

Using a family member as an interpreter may be difficult as it may not be appropriate for a particular family member to hear the information being discussed, or they may filter information. For more information on cultural groups and vulnerable populations, visit the CareSearch section: Diversity.

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Video

Atul Gawande on How to Talk About End-of-Life Care with Dying Patient

This information was drawn from the following resources:

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