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(s). 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, neuro-psychology/psychiatry and bereavement counselling), with GP 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:

  • 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.

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.

Participation in research and clinical trials should be encouraged where available and appropriate.

  • 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, assessment and referral to appropriate health professionals is required to meet the identified needs of an individual, their carer(s) 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

  • Fatigue/change in functional abilities is a common symptom, and patients may benefit from referral to occupational therapy.
  • Decline in mobility and/or functional status may result from treatment.
  • Assistance with managing complex medication regimens, multiple medications, assessment of side effects and assistance with difficulties swallowing medications may be required. Refer to a pharmacist if necessary.

Psychological needs

  • Patients may need support with emotional and psychological issues including, but not limited to, body image concerns, fatigue, existential anxiety, treatment phobias, anxiety/depression, interpersonal problems and sexuality concerns.
  • Many patients with CUP find the uncertainty surrounding their disease and the limited treatment options difficult and would welcome the opportunity to ask questions and learn about others’ experiences (Boyland & Davis 2008).
  • Many patients with CUP and their clinicians have a poor understanding of their illness, have difficulty in explaining their illness to others, and have a sense of frustration in health professionals not having the answers (Boyland & Davis 2008, Karapetis et al. 2016).
  • Depressive symptoms are higher in people with CUP when compared with people with cancer of a known origin, so they require more psychosocial support and specific interventions (Hyphantis et al. 2013).
  • GPs play an important role in coordinating care for patients, including assisting with side effects and offering support when questions or worries arise. For most patients, simultaneous care provided by their GP is very important (Lang et al. 2017).

Social/practical needs

  • Ensure the patient attends appointments.
  • Potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment and for patients with neuropsychiatric symptoms, can be an issue. Social isolation can also compound distress (Australian Cancer Network 2009).
  • Financial issues related to loss of income and additional expenses as a result of illness and/or treatment may require support.
  • Help with legal issues may be required including advance care planning, appointing a power of attorney and completing a will.

Spiritual needs

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

Information needs

  • CUP patients are more likely to want written information about their type of cancer and tests received but less likely to understand explanations of their condition (Wagland et al. 2017).
  • 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.
  • Patients from culturally and linguistically diverse backgrounds may need information provided in other formats.

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 GP should be kept fully informed and involved in major developments in the patient’s illness trajectory.