End-of-life care

Evidence summary and stakeholder input

The following is a summary of the findings from the evidence gathering activities and stakeholder consultations undertaken to inform development of the Roadmap. For more information on the development of the Roadmap see the About page.

Last updated: 31 March 2022

Evidence summary

The primary aim of end-of-life care is to maintain the patient’s quality of life, addressing health and supportive care needs, as well as the needs of their family.¹ If the treatment team does not include a palliative care member, the lead clinician should consider referring the patient to palliative care services, with general practitioner (GP) engagement.¹ Patients may require additional support for home and community-based care, including community nursing and specialist palliative care workers.

However, life-prolonging medical treatments can dominate over supportive care near the end-of-life²𝄒³ and potentially inappropriate end-of-life care can have a negative impact on a patient’s quality of care at the end-of-life.⁴𝄒⁵

Most patients with cancer prefer to remain at home as much as possible towards the end-of-life, and a high level of hospital care in the last months of life may, therefore, not be associated with improved quality of life.⁶⁻¹¹

An analysis of the Upper Gastrointestinal Cancer Registry (UGICR) indicated that over one quarter of individuals with pancreatic cancer had spent more than 14 days in an acute hospital in the 30 days prior to their death, and around 10% had presented two or more times to an emergency department in the 30 days prior to their death. In addition, of those that died of pancreatic cancer 20% had died within 30 days of chemotherapy and 4% died within 30 days of surgery.

People with pancreatic cancer experience a significant symptom burden. While 53 guidelines for the treatment and care of people with pancreatic cancer were identified through evidence gathering activities, a notable gap is the lack of pancreatic cancer-specific end-of-life care guidelines. The development of comprehensive multidisciplinary guidelines specifically focused on a range of symptoms associated with the disease and end-of-life care, can enhance support and care for people diagnosed with pancreatic cancer.

Stakeholder input

Given that end-of-life is steeped in cultural protocol and religious observance, a high degree of cultural sensitivity is required to manage end-of-life care. The unique end-of-life needs for Aboriginal and Torres Strait Islander people and other priority population groups were raised.

A lack of appropriate time and space to allow Aboriginal and Torres Strait Islander families and communities to conduct cultural practices, including ceremony leading up to and at the time of death, a balance between male and female Aboriginal and Torres Strait Islander palliative care workers, and limited resources (staff, equipment, medications) to facilitate comfortable dying on country were highlighted.

Improved access to supportive and palliative care, and resources to help palliative care professionals understand the priorities and contexts of Aboriginal and Torres Strait Islander people were noted, together with the need to increase funding for repatriation to country at end-of-life.

While stakeholders highlighted a range of symptoms that are challenging for patients to manage, including the debilitating side effects of chemotherapy and surgery, the most common symptom referenced was pain. Stakeholders raised the importance of health professional training and education in pain management protocols and ensuring all pancreatic cancer patients have access to expert, effective, pancreatic cancer-specific pain management advice and support.

The importance of provision of information to patients and families to help plan for what to expect at end-of-life and the need to develop better support frameworks for palliative and end-of-life care were highlighted.

Stakeholders supported an increased role for primary care in planning for and delivering end-of-life care, in collaboration with community-based support and inpatient palliative care expertise, noting however, that establishing appropriate care plans and making end-of-life considerations was made more challenging due to the poor health literacy and language barriers experienced by some CALD patients.

Key priority areas, strategies and activities 

Each key priority area has supporting strategies and associated activities for implementation in the short, medium or long term that have been identified to achieve the priority.