In 2014 I was awarded a PhD in Creative Writing from the University of Western Australia.  I had written a broadly accessible novel with a central theme of palliative care, its aim to inspire,  delight, and enhance understanding of care at the end of life.

 

Three events triggered the publication of my novel, Acacia House.  First, my father’s painful death, denied palliative care because “he didn’t have cancer”.  Next, the closure of the hospice in which I’d nursed for ten years  - ostensibly to ‘spread palliative care more widely’.  Fourteen years later, working on Palliative Care WA’s Helpline, I realized how the word “palliative” still provoked fear in the community.  

 

I researched how to write and what to write. How to write an ethical novel?  It needed to promote human flourishing.  And it must empower the reader, offering more questions than answers.  What to write?  The palliative care communities in Australia, South Africa and Ireland inspired me.  My characters emerged.  My imagination was on fire.  I wrote.

 

I was awarded a PhD.  The novel was shortlisted for the TAG Hungerford Award.  The best literary agent in Australia snatched it up but no publisher would touch it.  “Palliative” wouldn’t sell. I self-published.  The novel received outstanding reviews. In a year, 700 books sold.  With little publicity, it moved by word of mouth.

 

I surveyed fifty readers.  10% worked in palliative care, 65% had encountered palliative care. 96% stated that the novel prompted valuable discussion - 78% on hospice care, 78% care at home, 56% grief and bereavement and 67% voluntary assisted dying.  

 

The survey and accompanying reader’s comments demonstrate beyond doubt the worth of fiction to promote discussion and dispel discomfiture around end of life care. 

Aims: To test the feasibility of surveying bereaved next-of-kin about their perceptions of end-of-life care for people over 18 years of age; to report results; and to identify issues for future research. 

Method: The study used the VOICES (Views of Informal Carers Evaluation of Services) questionnaire from the United Kingdom, adapted for use in Aotearoa New Zealand.  Identification of next-of-kin for all South Island deaths September-November 2017 was undertaken with 1,813 eligible people identified and 272 (15.0%) next-of-kin unable to be traced.  Surveys were posted out once only, with options to complete by mail, online, by telephone or with a face-to-face interview. 

Results: Of the 1,541 surveys distributed, 514 (33.4%) were completed. Results confirmed the suitability of the locally modified VOICES instrument and research process. The quality of care overall was rated most highly in hospice or own home, but only a minority were able to die in these settings. Nevertheless relatives indicated that most people died ‘in the best place’.  The Survey sought feedback on the medical and nursing aspects to care but relatives wished to offer comment on allied health professionals, lawyers and accountants who also support families with planning for end-of-life.

Conclusions: The VOICES questionnaire is acceptable to respondents.  Aspects of the questionnaire require modification before wider use, recommending a section for sudden deaths, and seeking opinions on support outside the medical and nursing professions would acknowledge and be more respectful of interprofessional collaborative practice offering a holistic lens to end-of-life care. 

Introduction
The benefits of a palliative care referral for patients with a life-limiting illness and their families and carers have been well demonstrated. However, many people still die having not had an appropriate referral to palliative care services; or their referral to palliative care services is at the end of life. A barrier to palliative care referral is a lack of understanding of patients, families, and carers as to what palliative care is. There are various myths and beliefs about palliative care that may prevent patients and families from accepting a palliative care referral.
Aim
To produce a short educational animated video describing 1. what palliative care is; 2.  the benefits of  palliative care;  and 3. busting some myths about palliative care
Methods
A literature review examined common incorrect beliefs about palliative care which may form barriers to patients and families accepting a palliative care referral. A collaboration with Swinburne University of Technology graphic design students has resulted in a short animated video about palliative care. 
Results
Animated videos combine visual and auditory information which can enhance learning. The short animated video is easy to understand, attractive, accessible and convenient. It has been designed to be used by health providers and services, especially in Oceania. 
Implications
Traditional paper brochures about palliative care are increasingly irrelevant to a more tech-literate and online community. Short, accessible, and informative animated videos will better meet the information needs of an increasing proportion of people who would benefit from accessing palliative care. Consumers with different abilities and levels of literacy are less likely to be excluded using this medium. English-speaking patients and families in Oceania can watch this free video on smartphones. Subtitles or dubbing in other languages can easily be added to further increase accessibility in our region. 

Background

In 2021 the New South Wales Government announced a funding enhancement to strengthen palliative care, with a mandate to support strong, integrated, and effective responses for people with late-stage chronic disease to maintain wellbeing and independence at home.

RPA Virtual Hospital established a new community-based Chronic Disease Palliative Care Team. The model of care utilises existing structures, processes, and care models through the Virtual Care Centre and Sydney District Nursing to provide care to this cohort of patients.

Goal of program

The objectives of the Chronic Disease Palliative Care service include:

Evaluation approach

The service will be evaluated and measured against the following:

Meeting the following KPIs:

Results/Conclusion

Gaps in service for late-stage degenerative and chronic conditions and disabled patients were filled with access to allied health professionals. Patient experience of receiving the Allied Health services is extremely positive – many patients had not previously been able to access speech pathology, dietetics or psychology in the community. Patients had improved outcomes from receiving interventions specially designed for their disease group. Patient journeys showcasing the impact of the service will be presented.

Overview

In Victoria, approximately only 50 per cent of people connected to a designated community palliative care service (CPCS) who want to die at home do so. The 2016 Victorian end of life and palliative care framework supports people to receive end of life care and dying in their place of choice. However, in regional and remote areas, the inequality in access to afterhours supports, particularly for a necessary face-to-face contact, is a significant issue. Postcode lottery is a reality.

 

Integrating the role of the local government area Ambulance Victoria (AV) Paramedic Community Support Coordinator (PCSC) has been an important project to improve patient preferential outcomes

 

Aim

Development of a shared guidance module of care between AV and our CPPS was collaboratively developed to foster local connections, improve after hours support, and engage paramedics as part of a coordinated, local, timely and patient-centered level of care for people who live in rural and remote locations, shifting usual AV approach from ‘reactive emergencies’ responses  to proactive healthcare.

Design/Method

Under a continuous improvement methodology, a communication system and referral pathway between the two service providers was established which included timely preemptive handovers; development of a 4 point communication system in home for: Advance Care Plans, Emergency Medical Booklet, Symptom management plan and Medication orders; point of care and post care discussions of call outs; and supportive education sessions to AV teams. 

Results of findings/Data Collection

Conclusions/Lessons learned

Background

End-of-life dreams and visions (ELDVs) are a common accompaniment to the dying process. International studies have shown that 69-84% of dying patients report having dreams or visions primarily of deceased loved ones and that these experiences are a source of comfort for not only the dying person but also their families.  60-90% of healthcare professionals in palliative care settings and residential aged care facilities report either witnessing or being told of an ELDV in the preceding 5 years.   

In Australia, more than 50% of end-of-life care occurs in an acute care hospital and this care is provided by doctors and nurses who may not have received any education, either undergraduate or post-graduate, regarding holistic end-of-life care. It seems likely that acute care nurses may therefore be less likely to identify and provide support for ELDVs than those working in palliative care and residential aged care settings.

Aim 

 This study aims to:

Methods

The study is in progress using an explanatory sequential mixed methods design. Participants are medical and surgical nurses at a single hospital in Sydney. Phase one is using a cross-sectional survey to provide summary descriptive and inferential statistics and is due to be completed in June 2023. Phase two will involve in-depth semi-structured interviews to be completed in the second half of 2023.

Results

As of 17th March, the survey had recruited 30 of 164 (18%) medical/surgical nurses at the hospital. Final results from the survey will be presented at the conference, together with emerging themes from the interviews.

Counselling and grief support for the person with the illness and their family and carers is an integral part of palliative care. Access to counselling services within Residential Aged Care Facilities (RACF) is often limited. Yet, with 84% of Residents dying within two years of entry into RAC, most Residents require end of life (EoL) care. 

The Grief Counselling service at our organisation aims to support Residents, their families and carers through the multiple losses associated with the transition into RACF, dementia, the accumulation of a lifetime of grief as well as at EoL and bereavement support for family and carers.

Embedded within the Clinical Services Team (CS Team) and led by a Nurse Practitioner with Palliative and Dementia Care Clinical Nurse Consultants (CNC) in RACF, we integrate counselling services in the delivery of palliative care to Residents.  This role covers 23 RACF and access to our in-house service is available to about 2200 Residents. In line with palliative care, counselling is person and family-centred and adapted to the needs of the Resident. Considering the generational context of the Residents, their perceptions of counselling and their stoicism in the face of difficulties, we modify our approach with a focus on early engagement, interventions and collaborative care.

We present case studies from our practice that demonstrate the benefits of our alignment to the CS Team, adaptations used for counselling with this generation and the qualitative impact on Residents and their family. 

As part of the puzzle to address the emotional and psychological needs of Residents and their families and carers, we support the palliative care CNCs to deliver holistic care to Residents. Furthermore, building on the connections with the CS Team, we are looking towards integrating trauma-informed care within palliative care of Residents.

We have seen a rise in the demand for Palliative and End of Life Care (P&EOLC) services and know that this will be an area that continues to grow (EOL & PC framework 2019-2024). With this in mind, we needed to ask ourselves, how do we build a stronger service, delivering quality palliative and end of life care? 

One of the challenges of preparing for this demand is the variances in care delivery and differing needs of services across a large district.  The challenges of building capacity and capability for multidisciplinary clinicians and teams needs to be recognised and  innovative, strategic education principles applied to ensure the future of the workforce is trained, retained, sustained and confident in delivering quality P&EOLC and ultimately patient outcomes are improved.

Recognising the diverse educational needs of clinicians providing P&EOLC, a District Wide Nurse Educator was piloted to address some of the challenges, learning needs, and building a stronger specialist workforce. 

The climate was particularly challenging due to a pandemic, staff shortages across the district as well as the differing skill levels, service needs, resources and the need for the role to provide equitable P & EOLC education across metropolitan, rural and remote areas across a district of significant size. 

A district wide adaptable mixed model approach was formed, including the extensive use of virtual platforms, building a community of practice and various other modes of education delivery and communication. 

The approach proved that we could reach and connect district wide, with a 793% increase in clinician involvement over a 12-month period, strengthening our service to deliver equitable, high quality, adaptable P&EOLC education, to a health district and beyond. 

Background

Australians living with a life limiting illness experience varying need for palliative care intervention. Those with complex needs require access to specialist palliative care support. To deliver specialist palliative care nursing, nurses require specialised skills, competencies, experience, and palliative care training. The development of the beginner to expert education framework supports the current and future nursing cohort to achieve this. 

Aims/Objectives

The purpose of the framework was to embed the Palliative Care Nursing Australia (PCNA) competency standards to facilitate specialty palliative care nursing practice on an individual and system level.

 

Methodology

This framework is underpinned by Benner’s ‘Novice to Expert’ theory. Specialist palliative care nurses from the inpatient service and members from the education team reviewed the PCNA standards and the existing learning resources to create the framework. Palliative care nurses from different care settings brainstormed and contributed to the development of the framework.

Results/Findings 

Sequential developmental framework was developed from Beginner palliative care nurse, Developing palliative care nurse to Palliative care nurse and Nurse leader. Each PCNA competency standard has specific elements and performance criteria which describe nursing practice relevant to the standard. It was introduced to palliative care nurses by education sessions and through performance review process. The framework will be reviewed biannually.

This framework reflects the PCNA competency standards for palliative care nursing and guides nurses to identify their own strategies to progress along the beginner to expert journey. Engaging in meaningful learning activities, immersion in situational and experiential learning opportunities, and reflective practice will be fundamental to implement the framework. Perspectives from palliative care clinicians about the framework will be obtained to enhance the framework. 

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BACKGROUND: Nearly a decade ago, ‘Palliative care is everyone’s business’ was the theme of Australia’s national palliative care week. If palliative care truly is everyone’s business, then everyone should have access to public education about the philosophy and principles of palliative care.

 

AIM: To develop and deliver innovative public palliative care education programs in Australia.

 

METHODS: Viewing palliative care through a public health lens, we investigated the existing options of public education and identified Last Aid as a model of interest. Last Aid is an international education course delivered over four hours and comprises four standardised topics. Instructor training and licensing to deliver Last Aid in Australia was obtained. To complement and build upon Last Aid, we developed eight further public education courses to form the PalliLEARN fundamentals series. These one-hour courses provide accessible courses (online or face-to-face) that enable the expansion of public education to regional areas and when face-to-face activities are not possible.

 

RESULTS: Last Aid has been implemented in SA and QLD. With national support, PalliLEARN is currently being implemented in SA, QLD and the ACT. This presentation will provide a summary of their development, together with a stage 1 implementation activity summary of both Last Aid and PalliLEARN in Australia.

 

CONCLUSION: Viewing palliative care through a public health lens requires that we include and empower the public in better understanding the philosophy and principles of palliative care. Improved access to public palliative care education can be achieved through the development and implementation of innovative programs such as Last Aid and PalliLEARN.

Undertaking opioid conversions is an expected skill of community palliative care nurses. Despite a general understanding that this is a core skill required, resources to support the learning of new staff with opioid conversions are limited or targeted to doctors.

An internal survey of Eastern Palliative Care (EPC) novice nurses with fewer than 18 months experience revealed that learning opioid conversions caused them a great deal of stress. One hundred percent of nurses at EPC with no previous palliative care experience reported low confidence in their opioid conversions skills and desired more support.

Based on a learning need analysis, EPC developed a learning package to teach opioid conversion to new staff. The package was delivered via a mix of written material and in-person teaching. It included basic principles of opioid therapy, a step-by-step guide to opioid conversion with worked examples, prompts highlighting patient-specific considerations and expanded opioid conversion charts with calculation prompts. The learning tool was accompanied by in person tutorials. In sharing this learning package at the PCA conference we hope to provide a model to assist those who may want to implement similar packages within their own organisation.

Background: Specialist Palliative Care Allied Health teams play a pivotal role in symptom management and improving quality of life for patients in palliative care, as well as supporting families and carers through difficult times. Despite this, Allied Health staff are typically underrepresented within Palliative Care teams across Australia resulting in long waiting times from referral to contact. This presents a challenge for these teams to provide an efficient, meaningful, and holistic service to their patients. To address these challenges effective prioritisation of patient needs is crucial.  

 

Aim: To develop a standardised triage tool for multiple allied health disciplines that utilises PCOC for increased responsiveness and accuracy of care.  

 

Methods: A triaging tool was developed to prioritise allied health referrals using a ‘traffic light system’ i.e. red, yellow, green, or grey. This system reflects the urgency of intervention.  PCOC assessment scores are the primary determinant of triaging referrals and measures the impact of interventions by allied health clinicians on symptoms or problems. The triage tool has been adapted for different allied health professions to reflect their work within palliative care. This tool was developed to effectively prioritise both inpatient and community patient needs separately, or simultaneously when a combined caseload has been required.  

 

Results: This triaging tool is used by clinicians daily to objectively prioritise their caseloads and allows for a uniform way to communicate within the team in case conference and team meetings. It helps coordinate care, ensuring that patients most urgent needs are prioritised and increases opportunity for interdisciplinary collaboration when prioritising team referrals.  

 

Conclusions: This triaging tool accurately identifies urgency of patient needs to assist clinicians with effective prioritisation of patient needs. It has led to improved collaboration within our allied health team to improve team efficiency and quality of care.