STEP 7: End-of-life care

End-of-life care is appropriate when the woman’s symptoms are increasing and functional status is declining. Step 7 is concerned with maintaining the woman’s quality of life and addressing her health and supportive care needs as she approaches the end of life, as well as the needs of her family and carer. Consideration of appropriate venues of care is essential. The principles of a palliative approach to care need to be shared by the team when making decisions with the woman and her family.

If not already involved, referral to palliative care should be considered at this stage (including nursing, pastoral care, palliative medicine specialist backup, inpatient palliative bed access as required, social work and bereavement counselling), with general practitioner engagement.

If not already in place, the patient and carer should be encouraged to develop an advance care plan (AHMAC 2011).

The multidisciplinary palliative care team may consider seeking additional expertise from a:

  • pain service
  • pastoral carer or spiritual advisor
  • bereavement counsellor
  • therapist (for example, music or art).

The team might also recommend accessing:

  • home- and community-based care
  • specialist community palliative care workers
  • community nursing.

Consideration of appropriate place of care and preferred place of death is essential.

Ensure the needs and preferences of the person’s family and carers are assessed and directly inform support and guidance about their role (Palliative Care Australia 2018).

Further information

Refer patients and carers to Palliative Care Australia.

Participation in research and clinical trials should be encouraged where available and appropriate. Cross-referral between clinical trials centres should be encouraged to facilitate participation.

For more information visit Australian Cancer Trials.

Screening, assessment and referral to appropriate health professionals is required to meet the identified needs of the woman, her carer and family.

In addition to the common issues identified in the Appendix, specific issues that may arise at this time include:

  • emotional and psychological distress from anticipatory grief, fear of death/dying, anxiety/ depression, interpersonal problems and anticipatory bereavement support for the woman as well as her carer and family
  • practical, financial and emotional impacts on carers and family members resulting from the increased care needs of the woman
  • legal issues including advance care planning, appointing a power of attorney or enduring guardian, completing a will and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability
  • arranging a funeral (provide information to the woman and her family)
  • specific spiritual needs that may benefit from the involvement of pastoral care
  • bereavement support for family and friends
  • specific support for families where a parent is dying and will leave behind bereaved children or adolescents, creating special family needs
  • physical symptoms including pain and fatigue
  • change in physical appearance
  • increasing dependence on others
  • bowel obstruction or small bowel dysfunction (bowel issues such as constipation, diarrhoea and cramps may require support from a dietitian, continence nurse, stomal therapist or medical specialist)
  • abdominal ascites (abdominal symptoms need monitoring and assessment)
  • decline in mobility and/or functional status impacting on the woman’s discharge destination (a referral to physiotherapy and occupational therapy may be needed).

The lead clinician should:

  • be open to and encourage discussion about the expected disease course, with due consideration to personal and cultural beliefs and expectations
  • discuss palliative care options including inpatient and community-based services as well as dying at home and subsequent arrangements
  • provide the woman and her carer with the contact details of a palliative care service.

The lead clinician should discuss end-of-life care planning and transition planning to ensure the woman’s needs and goals are addressed in the appropriate environment. The woman’s general practitioner should be kept fully informed and involved in major developments in the woman’s illness trajectory.