Aims: To determine how patients with Stage 3-5 chronic kidney disease interact with health services and how they perceive their symptom experience, quality of life and supportive care needs.
Methods: Participants, who were potentially in their last year of life, were recruited from a Queensland Health Hospital and Health Service – Kidney Health Service. Data were collected at regular intervals from multiple sources for a 12-month period or until death for this prospective, longitudinal observational study. Face-to-face interviews were conducted with 19 consenting patients at baseline and then three monthly to study end to collect information of their symptom experience, physical functioning, quality of life and supportive care needs. Six consenting informal carers were interviewed at baseline to collect their demographic information. Patients were also interviewed briefly by phone each month between face-to-face interviews to check their symptoms experience and physical functioning. Administrative health data were collected regularly throughout the study period to capture acute health service use (emergency department presentations and inpatient admissions- collectively critical events), referrals to palliative care services, and medical and treatment details.
Results: Patients median age was 78 years (range 42-90), 63% were male, 84% lived with others and seven patients (37%) died during the study. Ten patients received dialysis and nine received conservative care. Pain, fatigue and breathlessness were the most prevalent symptoms reported while sexual and sleep problems were the most troublesome (Bonner et al. 2018). Patients were found to be frequent users of acute health services with 44 emergency department presentations and 74 inpatient admissions collectively recorded during the study period across participating hospitals. All critical events were rated as unavoidable by two nephrologists. Respiratory distress was found to be the most common trigger to the critical events recorded (Chambers et al. In Press).
Bonner, A., Chambers, S., Healy, H., Hoy, W.E., Mitchell, G., Kark, A., Ratanjee, S., & Yates, P. (2018). Tracking patients with advanced kidney disease in last 12 months of life. Journal of Renal Care, [Epub] DOI:10.1111/jorc.12239 (Ranked Q1 [Advanced and Specialised Nursing] 2015)
Chambers, S., Healy, H., Hoy, W.E., Kark, A., Ratanjee, s., Mitchell, G., Douglas, C., Yates, P. & Bonner, A. (2018). Health service utilisation during the last year of life: A prospective, longitudinal study of the pathways of patients with chronic kidney disease stages 3-5. BMC Palliative Care, [In Press] DOI: 10.1186/s12904-018-0310-8 (Ranked Q1 2016)
Aims: To describe the symptom burden of people referred to specialist palliative care services using data collected through the Palliative Care Outcomes Collaboration http://ahsri.uow.edu.au/pcoc/index.html (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 (email@example.com)
Aims: 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 (firstname.lastname@example.org)
Aims: To evaluate Nurse Practitioner-led case conferences with General Practitioners for people with advanced, life-limiting diseases in regional areas. Specifically, this project 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
Setting: An Australian rural district 50 km from the nearest specialist palliative care service.
Participants: Adults nearing the end of life from any cause, with life expectancy of several months.
Intervention: NP-led assessment, then case conference conducted as soon as possible after referral. A clinical care plan recorded management plans for current and anticipated problems and who was responsible for each action. Eligible patients had baseline, one month and three month patient-reported assessment of function, quality of life, depression and carer stress, and a clinical record audit. Interviews with key service providers assessed the utility and feasibility of the service.
Results: 62 patients were referred to the service, 40 from the specialist service. Many patients required immediate treatment, prior to both the planned baseline assessment and the planned case conference (therefore ineligible for enrolment). Only six patients were assessed per protocol, so we amended the protocol. There were 23 case conferences. Reasons for not conducting the case conference included the patient approaching death, or assessed as not having immediate problems. Pain (25%) and depression (23%) were the most common symptoms discussed in the case conferences. Ten new advance care plans were initiated, with most patients already having one. The NP or RN made 101 follow-up visits, 169 phone calls, and made 17 referrals to other health professionals. The NP prescribed 24 new medications and altered the dose in nine. There were 14 hospitalisations in the timeframe of the project. Participants were satisfied with the service, but the service cost exceeded income from national health insurance alone.
Conclusions: NP-coordinated, GP-supported care resulted in prompt initiation of treatment, good follow up, and a care plan where all professionals had named responsibilities. NP-coordinated palliative care appears to enable more integrated care and may be effective in reducing hospitalisations.
Service providers were anxious that the model continue as it provided a level of service not possible without it. The Palliative Care Service wanted the model extended to cover all of the rural areas it serviced. Currently about half of the areas were not covered in the pilot and they identified clear differences in the quality of palliative care possible between the two areas. It was clear that economic viability is highly dependent on funding from an external source, due to of the inherent inefficiencies involved in caring for housebound people in rural areas due to long travel times. Furthermore, Medicare funding available to NPs does not go anywhere near the actual costs of this service. They only cover some services required for funding and do not cover others, like telehealth consultations or essential travel. The fees are clearly predicated on a high population base in urban areas. The current model curtails the capacity of NPs to deliver comprehensive services in a rural setting, and forces reliance on base funding from other sources.
Contact: Prof. Geoffrey Mitchell (email@example.com)
Mitchell, G., Yates, P., Senior, H. & Rosenberg, J.P. (2015) Evaluation of the Better Access, Support and Interdisciplinary Care – Nurse Practitioner (BASIC-NP) Pilot program. The University of Queensland/Queensland University of Technology: Brisbane QLD.
Mitchell, G.K., Senior, H.E., Bibo, M.P., Makoni, B., Young, N.S., Rosenberg, J.P. & Yates, P. (2016). Evaluation of a pilot of nurse practitioner-led, GP supported rural palliative care provision. BMC Palliative Care. 15:93. doi:10.1186/s12904-016-0163-y
Rosenberg, J.P., Senior, H.E., Deckx, L., Bibo, M.P., Makoni, B., Yates, P. & Mitchell, G.K. (2016). Invited keynote speaker, Vivian Bullwinkel Award for best abstract. Improved experiences of care: a pilot of a Nurse Practitioner-led model. 6th Biennial Palliative Care Nurses Australia Conference, September, Canberra.
Aims: 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).
Aims: To develop and trial methods for evaluating consumer and carer experiences of end-of-life care.
The CRE ELC is undertaking a systematic review to provide the evidence needed to tailor an intervention to enable consumer participation in end-of-life treatment decisions.
Aims: To identify and explore the factors that influence consumers’ end-of-life treatment decision-making.
Methods: Using appropriate key words and phrases, the literature was searched from 2000 across PubMed (which includes Medline) and EBSCOhost (CINAHL, ERIC, Social Work Abstracts, SocINDEX with full text, Academic Search Elite, PsycINFO) databases.
Results to date: Of the original 2016 records identified, 290 titles were selected and their abstracts screened by two investigators. Ninety-nine abstracts were selected and two additional records were identified from other sources, in total 101 abstracts were screened by two investigators. Disagreements of decisions to accept or reject a paper were first discussed between the relevant investigators; a third independent reviewer provided input as necessary. In total, 82 full text articles were reviewed of which 35 were rejected. The 47 papers accepted were quality appraised and relevant data were extracted.
Where to from here: Currently records are being updated to include the latest papers since this review process began. Once these additional records are screened and reviewed by relevant investigators, a critical narrative analysis of the studies’ findings will be undertaken and the combined findings will be written into a manuscript.
Project Lead: Prof Patsy Yates (firstname.lastname@example.org)
Project Lead: Dr Shirley Chambers (email@example.com)
- 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. This phase is complete and an article containing research results has been submitted for publication.
- 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. Analysis of interviews undertaken during this phase is on-going.
Contact: Prof Lindy Willmott (firstname.lastname@example.org)