Palliative care includes the person and their family of choice

What it is

Care centred on the person and family as a unit is core to the philosophy of palliative care. Nurses will often spend much of their time providing care to and working with families.

Family has been described by Palliative Care Australia as "people identified by the person as family and may include people who are biologically related and people who joined the family through marriage or other relationships, as well as the family of choice and friends (including pets)". Carers may include family members and other members of their community (such as close friends and neighbours) who the person agrees to being involved in their care.' Palliative Care Service Development Guidelines (2018).

Why it matters

The goals of supporting family have been described as: meeting their needs; minimising their distress; improving their well-being and ultimate outcomes; and empowering them to provide care. Achieving this requires health professionals to work with families.

In practice

Nurses working with people with palliative care needs will provide clinical care and spend time getting to know and building rapport with people in their care. The role can include:

  • emotional and spiritual support,
  • ongoing education about care and management,
  • support during decision making on end-of-life issues,
  • support after death
  • working with colleagues to manage family differences of opinion and conflict.

Supporting families can often be complex and time-consuming. Family meetings and case conferences are one way of facilitating communication and decision-making.

Palliative care family meetings or case conferences

Family meetings are an informal opportunity to hear from and learn about a person and their family and what is important to them. At this time nurses might also provide them with information about their condition and discuss what this means for them. Case conferences are more formal meetings with the person and their family and involving the care team. The focus is on making plans or decisions about current or future care. 

You can use family meetings to involve the person and their family in care planning, and to help them feel empowered and supported. Family meetings can be a proactive way of managing and planning care at any time, and should be considered on:

  • referral to palliative care
  • confirmation of disease progression
  • discontinuation of treatment or when maximal medical management has been reached
  • discharge is planned from an inpatient setting, and
  • the person’s condition changes and goals of care need re-assessing.

A case conference may also be required when a resident or patient meets the following criteria:

  • By a positive response to the question: 'Would you be surprised if the resident died within the next six months?'
  • If there has been a significant functional or medical decline
  • If problems are perceived concerning goals of care around futile treatment (perhaps after an acute event), and

  • If the resident is transferred or admitted to the RACF specifically for comfort care / palliative care.

When considering a case conference, it is important to decide who should be present, such as relevant members of the multidisciplinary team, a member(s) of the family, GP, a representative from community and or /care organisations. The person and their family should also be asked who they think should be present.

Sometimes discussions are held after hours where crisis management may be required. As soon as possible bring in the wider team to communicate and plan what is required next.

How to facilitate discussions and prioritise the needs of unpaid carers

One important aspect of a nurse’s role in palliative care is that of supporting carers. Carers are those who look after someone at home and are usually considered informal or lay carers as they are not being paid for what they do. They are part of the care team and it is important that support is provided for carers.

Nurses can help by letting carers know where to find trustworthy information and resources. This includes CarerHelp, online education about what to expect and what you can do as a life-limiting illness progresses.

CareSearch’s Diversity hub has information on supporting people from diverse backgrounds.

Marie Curie website provides practice guidance on Supporting family and friends in palliative care.

Page created 15 August 2022