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.
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?”).
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.
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.
Thinking Points
- Discuss the impact that withholding truth about the person’s condition can have:
- On a person with a life-limiting illness
- On their family
- On you.
- How is collective decision-making accommodated in healthcare?
References
- PEPA/IPEPA Project. 2022. PEPA/IPEPA Communication Guide: Supporting access to palliative care for everyone.
- Australian Commission on Safety and Quality in Health Care (2011) Person-centred Care.
- CareSearch. 2024. Communication and shared decision-making
- Wall, E et al, (2016). Trauma-informed care in child/family welfare services. Australian Institute of Family Studies.
- Sharma, RK & Dy, S M. 2011. Cross-Cultural Communication and Use of the Family Meeting in Palliative Care. American Journal of Hospice and Palliative Medicine, 28(6), 437-444.
- Wiener, L. et al, 2013. Cultural and religious considerations in pediatric palliative care. Palliative & Supportive Care, 11(1), 47-67.