STEP 7: End-of-life care

End-of-life care is appropriate when the patient’s symptoms are increasing and functional status is declining. Step 7 is concerned with maintaining the patient’s quality of life and addressing their health and supportive care needs as they approach the end of life, as well as the needs of their 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 patient and their family.

If not already underway, 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, psychology/psychiatry 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 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:

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

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

Occupational therapy home assessment is also essential to ensure palliative patients receiving home-based care are managed safely.

Ensure carers and families receive information, support and guidance regarding their role according to their needs and wishes (Palliative Care Australia 2005).

Further information

Refer patients and carers to Palliative Care Australia.

All patients with sarcoma should be offered the opportunity to participate in a clinical trial or clinical research if appropriate (Field et al. 2013).

Cross-referral between clinical trials centres should be encouraged to facilitate participation.

  • Australasian Sarcoma Study Group is a national cooperative cancer clinical research group.
  • It coordinates large-scale multi-centred sarcoma trials.
  • Australian Cancer Trials is a national clinical trials database. It provides information on the latest clinical trials in cancer care, including trials that are recruiting new participants. For more information visit the Australian Cancer Trials website.

Screening with a validated screening tool (for example, the National Comprehensive Cancer Network Distress Thermometer and Problem Checklist), assessment and referral to appropriate health professionals or organisations is required to meet the identified needs of an individual, their carer and family.

In addition to the other common issues outlined in the Appendix, specific needs that may arise at this time include the following.

Physical needs

  • Physical symptoms such as pain, fatigue and musculoskeletal dysfunction may require extra support.
  • Decline in mobility and/or functional status affecting the patient’s discharge destination will need to be considered.
  • Fatigue or change in functional abilities is a common symptom, and patients may benefit from referral to occupational therapy and/or physiotherapy.
  • Reduced oral intake and/or swallowing difficulties and weight loss require referral to a dietitian and speech pathologist (for swallowing difficulties).

Psychological needs

  • Patients, carers and families may need strategies to deal with emotional and psychological distress from anticipatory grief, fear of death/dying, anxiety/depression, interpersonal problems and anticipatory bereavement support.
  • Patients who experience existential distress may benefit from supportive psychotherapy.

Social/practical needs

  • Provide support for the practical, financial and impacts on carers and family members resulting from the increased care needs of the patient.
  • Offer specific support for families where a parent is dying and will leave behind bereaved children or adolescents, creating special family needs.
  • Ensure the patient attends appointments.
  • Patients may experience isolation from their normal support networks, particularly for rural patients who are staying away from home for treatment.
  • Provide support for financial issues related to loss of income and additional expenses because of the illness and/or treatment.
  • Help with legal issues may be required including for advance care planning, appointing a power of attorney, completing a will and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.

Information needs

  • Provide information for patients and families about arranging a funeral.
  • Communicate about the death and dying process and what to expect.
  • Communicate with all members of the care team that the patient has died.
  • Provide appropriate information for people from culturally and linguistically diverse backgrounds.

Spiritual needs

  • Cater to specific spiritual needs that may benefit from involving pastoral care.
  • Provide bereavement support for family and friends.
  • Multidisciplinary teams should have access to suitably qualified, authorised and appointed spiritual caregivers who can act as a resource for patients, carers and staff.
  • Patients with cancer and their families should have access to spiritual support that is appropriate to their needs throughout the cancer journey.

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 patient and 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 patient’s needs and goals are addressed in the appropriate environment. The patient’s general practitioner should be kept fully informed and involved in major developments in the patient’s illness trajectory.