Achieving needs-based end-of-life services: a prospective, longitudinal study of the pathways for patients with Stage 3-5 chronic kidney disease.

Aim: To determine how patients with Stage 3-5 chronic kidney disease interact with health services and how they perceive quality of life, supportive care needs, symptoms and their experience with health services (in progress).

This prospective, longitudinal observational study will collect data at regular intervals from multiple sources for a 12-month period or until death. All baseline interviews were conducted with 11 consenting patients and seven carers, and 3-month follow-up interviews with six patients. The study will describe:

  • patient demographic and clinical characteristics,
  • experiences with health services,
  • Quality of Life,
  • supportive care needs, and
  • use of primary health care (General Practitioner and community), renal (including general medical), palliative, and emergency services over time

and will identify:

  • triggers and barriers to referrals and access to specialist palliative care services,
  • triggers for using emergency services, and
  • associations between patient-reported perceptions of their experiences with health services, Quality of Life, and supportive care needs.

Contact: Prof Ann Bonner (


Patient outcomes in palliative care – a national perspective of malignant and non-malignant diseases.

Aim: To describe the symptom burden of people referred to specialist palliative care services using data collected through the Palliative Care Outcomes Collaboration (data analysis complete; publication in preparation).

The dataset used for this study included patients having episodes of palliative care starting and ending between 1 July 2013 and 30 June 2014. ‘Malignant’ category patients consisted of all patients with a primary diagnosis of cancer, the top three being lung, colorectal and other gastrointestinal. The ‘non-malignant’ category included patients with any other primary diagnoses (cardiovascular disease, respiratory failure and end-stage kidney disease).

Contact: Prof Kathy Eager (


Implementing principles of end-of-life care in acute care settings (PreELAcS).

Aim: To develop and evaluate new models of care based on the principles of The National Consensus Statement: essential elements for safe and high quality end-of-life care (in progress).

To address end-of-life care in acute care settings, The National Consensus Statement: essential elements for safe and high quality end-of-life care (the Consensus Statement) was launched by the Australian Commission on Safety and Quality in Healthcare in May 2015. The Consensus Statement describes the essential elements and suggested best practice for delivering safe and high quality end-of-life care in acute settings in Australia.

Contact: Prof Patsy Yates (


Evaluating the BASIC-NP Project (Better Assessment, Support and Interdisciplinary Care – Nurse Practitioner).

Aim: To evaluate Nurse Practitioner led case conferences with the General Practitioner for people with advanced, life-limiting diseases in regional areas (completed; new, related project in progress).

This pilot study analysed case conferences between General Practitioners and Nurse Practitioners for patients at end-of-life residing in community and residential aged care facilities. It aimed to:

  • identify the core components of a case conference led by Nurse Practitioners
  • assess if Nurse Practitioner-led case conferences reduced health service use for palliative care patients
  • evaluate the impact of routine care planning on patient and family care outcomes, service use and cost
  • evaluate the acceptability of case conferences by Nurse Practitioners, General Practitioners and community health professionals
  • evaluate the acceptability and usefulness of telehealth for delivering case conferences

Contact: Prof Geoffrey Mitchell (


Evaluating the role of innovative technologies to enable end-of-life care service provision.

Aim: To identify the barriers and enablers to using technology by staff in care facilities, and what potential applications could be used to improve outcomes in palliative care provision (due to commence at the end of 2016).


Developing and validating a national approach to assess consumer and carer experience of end-of-life care.

Aim: To develop and trial methods for evaluating consumer and carer experiences of end-of-life care.


Enabling consumer participation in end-of-life treatment decisions.

Aim: To trial interventions for improving accessibility of palliative care services, evaluating specialist consultation and cost effectiveness of the models delivered (due to commence at the end of 2016; a systematic literature review is in progress).


Do concerns about legal and ethical risk affect the provision of pain relief at the end of life?


  • Phase 1 – identify and compare the regulatory regimes that govern decisions about administering pain and other symptom relief at the end of life across Australia (almost complete).
  • Phase 2 – describe and analyse health professionals’ knowledge and perceptions regarding the Queensland and New South Wales laws on prescribing and administering adequate pain and other symptom relief at the end of life, and the impact on their practice in relation to prescribing and administering pain and other symptom relief to end-of-life patients.

Contact: Prof Lindy Willmott (


An Australian study: Incidence and characteristics of end-of-life decisions in Victoria.

Aim: To establish a research protocol that could be replicated across all states and territories in Australia that will:

  • produce a validated questionnaire to capture data on end-of-life decisions in Australia,
  • provide reliable estimates of the number of deaths in Victoria that involve end-of-life decisions,
  • determine the characteristics of end-of-life decisions and how they relate to patient characteristics, and
  • compare data with similar international studies.

This pilot project will use semi-structured interviews with doctors and nurses in a range of different health contexts (hospitals, residential aged care facilities, in community) and in both urban and regional settings to better understand the nature and extent of legal and ethical concerns about administering palliative care at the end of life, and how this influences practice.

Contact: Prof Lindy Willmott (