Friday Presentations – Abstracts

Abstracts are listed alphabetically by presenter name.

Creatively transforming care within the acute hospital setting using the arts to connect to self and others.

Katrina Armour 1 Josephine Ferrrar 2 Judith McMahon 3 Joan Ryan 4

1 Nurse Unit Manager. Royal Prince Alfred Hospital, Camperdown, Palliative Care, Aged Care and Immunology

2 Clinical Nurse Education Royal Prince Alfred Hospital

3 Clinical Nurse Specialist Royal Prince Alfred Hospital

4 Palliative Care CNC Royal Prince Alfred Hospital

BACKGROUND: Nurses working in Palliative Care or exposed to its ethos will be challenged individually and collectively by disparities in the provision of Palliative Care and the landscape of dying within the acute hospital environment. Collocation of hospital based palliative care patients with other specialities on a shared model of care can cause tension across such an interface. Nurses confront suffering routinely whenever or wherever they are caring for dying patients and are often seen as the caretakers of suffering. As such suffering manifests directly on the physical, emotional, psychological and existential dimensions of care that often defies reduction to a clinical pathway or conceptual framework. What then are the challenges of transforming the landscape of dying when nurses are faced with ethical and moral dilemmas of competing goals of care when death perhaps is not the most feared cause of all suffering?

AIM: To recognise the legitimacy of such emotionally and ethically charged work within a shared model of care within acute hospitals; Using the arts as a conduit to reflect.

METHOD: Thematic analysis of qualitative and quantitative data from nursing staff on a newly configured ward accommodating Palliative Care with two other specialities.

RESULTS: Nurses reported high levels of workplace frustration, uncertainty and confusion. Responses ranged from anger to feeling helpless and overwhelmed. However, using the arts created a positive sense of wellbeing, happiness and increased connectedness to the person and core values of care. Humour, positivity and a sense of possibility also noted. 

CONCLUSION: Collocation of hospital based Palliative Care patients provides opportunity for nurses to learn broadly. It is vital in response to an aging population with chronic and complex care needs and the evolution of more collaborative models transforming Palliative Care. This report asserts the importance of reflective practise and creativity in approaching less conventional models of Palliative Care.

Presenter Bio:

Carer experiences of palliative care: informing and transforming practice through an exploration of carer narratives.

Kristin Bindley (Bereavement Counsellor), Suzanne Coller (Clinical Nurse Consultant), Trish Dalgleish (Nurse Unit Manager), Pamela Kalkandis (Occupational Therapist), Anne May (Clinical Nurse Educator), Wendy Pavlek (Social Worker).

Mt Druitt Supportive and Palliative Care Unit, Supportive and Palliative Medicine, Western Sydney Local Health District

Following participation in the National Standards Accreditation Program in 2011 and 2013, our interdisciplinary team reflected on findings from two quantitative survey processes undertaken using the Family Evaluation of Palliative Care. Discussion considered approaches to future evaluation that would yield richer detail about the experiences of bereaved carers of people with a life limiting illness; from their first contact with our palliative care service, throughout the illness trajectory to the time of death and into bereavement.

With a desire to engage bereaved carers directly in service evaluation and to learn from their unique narratives, our team commenced a qualitative study (analysis phase in progress at time of submission). Influenced by principles of narrative methodology, the study sought to interview bereaved carers using an open-ended, in depth interview framework designed to facilitate holistic exploration of the physical, social, emotional, psychological and spiritual dimensions of the carer’s experience of palliative care. Thirteen bereaved carers were recruited three to six months following the death of a palliative care patient known to Mt Druitt Supportive and Palliative Care Unit. An undergraduate Social Work Honours student interviewed participants, with co-supervision from two members of the research team. The process of data immersion involved members of the research team transcribing and coding interview transcripts collaboratively.

This paper will report on the thematic analysis of the interview transcripts, undertaken with the aid of thematic networks as an analytic tool (Attride-Stirling, 2001, Braun and Clarke, 2008). Approaches to the effective dissemination of findings intended to inform practice will be discussed. Underpinned by specific ethical considerations relevant to bereavement research (Bentley and O’Connor, 2015, Beck and Konnert, 2007, Buckle et al, 2010, Sekelja, 2009), this study values the experiences of bereaved carers and endeavours to honour the potential for their voices to transform care.

Presenter Bio: Kristin Bindley has worked as a Palliative Care Bereavement Counsellor in Western Sydney for the past eight years. She has completed postgraduate study in grief, loss and trauma and possesses a background in Social Work.

Data drives improvement; Utilising Palliative Care Outcomes Collaboration (PCOC) reports to transform clinical care for patients and families – A case study analysis.

Fiorina Mastroianni, PCOC Quality and Education Manager, Gaye Bishop, PCOC Quality Improvement Facilitator

Palliative Care Outcomes Collaboration | Australian Health Services Research Institute (AHSRI) University of Wollongong

Palliative care services can use PCOC patient outcome reports to review clinical practise and implement strategies for improvement. Data is essential for services to strategically and sustainably transform the clinical care environment. The PCOC assessment framework uses both clinician and patient rated validated assessment tools to assess and manage care. This presentation will use case studies to show how services can use a cycle of continuous assessment reporting and improvement to transform the palliative and end of life care that is provided to patients and families.

The PCOC assessment framework, audit and feedback quality cycle is designed to support palliative care services to measure patient-defined outcomes and to continually strive to improve the care that is offered. “There is a need to ensure that every service is delivering the best possible care to the people who most need that care.” Currow et al (2014).

This presentation will demonstrate how services improved outcomes for patients and families by using the PCOC assessment framework to better manage urgent and complex needs. In one case study the service changed response protocols for patients in the unstable phase. This resulted in significant improvements in clinical care, with the service achieving the benchmark for time in unstable phase within 12 months.

A second case study will showcase a service that has overcome a number of challenges to transform the care that is provided in a mixed medical ward within an acute setting. PCOC data and audits were used to implement improved education and assessment strategies which resulted in this service meeting 11/14 benchmarks within two years. These improvement strategies have led to significant and sustained improvement to achieve the benchmark for moderate to severe pain (60%) from 45.2% to 65.9% in the clinician rated tool and improvement from 48.8% to 54.2% in the patient rated tool.

Quality improvement strategies will be included in the discussion and delegates will learn to identify, discuss and reflect on common report findings and outcomes that can be used to drive palliative care improvements and change clinical practise to improve patient care.

Presenter Bio: Gaye Bishop is passionate about palliative care having worked in this area for 20 years. Gaye’s educational journey includes a Masters in Adult Ed, a specialty certificate in palliative care nursing and a Certificate IV in Training and Assessment. Gaye’s experience includes palliative care nursing in inpatient and community settings, nursing education and research, and development and delivery of palliative care education programs across specialist, aged care and acute settings. Gaye has been working with the Palliative Care Outcomes Collaboration as a Quality Improvement Facilitator since 2012.

A Changing Landscape? – A Snapshot of Palliative Care Advanced Trainees and Intentions toward rural practice in Australia.

Dr Alison Blight, Advanced Trainee in Palliative Medicine & Provisional Fellow in Pain Medicine, Newcastle NSW

Dr Richard Lawrence, General and Infectious Disease Physician, Newcastle NSW

This study used an online survey between November 2015 to February 2016 to explore factors that may influence intention towards future “Rural” practice amongst Australian Advanced Trainees (ATs) in Palliative Medicine. Using the ANZSPM member database, individual email invitations were sent in November 2015 and January 2016. 25 of approximately 88 ATs responded (28.5%).

Two thirds of the respondents were female, and 52% had entered training via the GP pathway. 64% were in their 3rd (or more) year of training, and 20% aged older than 45 years.

Of all respondents, 56% reported having lived in rural Australia, 24% had undertaken rural placements in Palliative Care, and 32% had visited rural areas with Palliative Care Outreach services. Hence 44% of respondents had some rural palliative care training experience.

In 2001 the Australian Government introduced the Rural Medical Bonded Scholarship (MRBS) for medical students as a strategy to address medical shortages in rural Australia. Scholarship holders are required to commence rural practice within 1 year of obtaining Fellowship, and remain in rural practice for up to 6 years. 2 trainees (8%) acknowledged being under this scheme.

On intentions towards rural practice of Palliative Care within 5 years of gaining Fellowship, 64% of respondents indicated “No”, 12% indicated they intended “Yes” to work rurally (including MRBS holders) and a further 24% were “Undecided”, inferring that up to 36% of candidates in this cohort would consider practicing Palliative Medicine in a rural area in the future (i.e. “Yes” + “Undecided”).

“No” intentioned and “Undecided” respondents were invited to give reasons. From these 22 respondents, 59% gave some indication of specific perceived barriers, including partner, family, individual or professional/work related concerns.

This study suggests that up to a third of ATs in Palliative Care would consider rural practice in the future, and that rural palliative care training experience (particularly Outreach visits) may influence intentions towards rural practice. Barriers identified included family, individual and professional concerns. The study also demonstrates an effect of the MRBS scheme on the future rural palliative care workforce.

Presenter Bio:  Dr Alison Blight is currently a Provisional Fellow in Pain Medicine with the Hunter Integrated Pain Service, Newcastle. She trained in Palliative Medicine from 2012 to early 2016, also in the Newcastle region. She has a background in pathology and public health prior to commencing medicine in 2001.

Are Rural and Remote Patients, Families and Caregivers Needs in Life-Limiting Illness Different from those of Urban Dwellers? A Narrative Synthesis of the Evidence.

Dr Sue Kirby sue.kirby@health.nsw.gov.au; Senior Research Fellow; Broken Hill University Department of Rural Health, the University of Sydney; 08 8080 1287.

Ms Veronica Barlow veronica.barlow@health.nsw.gov.au; Librarian; Broken Hill University Department of Rural Health, the University of Sydney; 08 8080 1210.

Dr Emily Saurman Emily.saurman@health.nsw.gov.au; Research Fellow; Broken Hill University Department of Rural Health, the University of Sydney; 08 8080 1206.

Prof David Lyle david.lyle@health.nsw.gov.au; Head of School ;Broken Hill University Department of Rural Health, the University of Sydney ;08 8080 1236.

Ass Prof Megan Passey megan.passey@sydney.edu.au ; Deputy Director Research ;University Centre for Rural Health Lismore, the University of Sydney 02 6620 7516.

Prof David Currow david.currow@flinders.edu.au ; Professor of Palliative and Supportive Services; Flinders University ;08 7221 8235.

Objective: This review aimed to assess the evidence to answer the question whether palliative end-of-life care needs of patients and caregivers in rural and remote communities differs from those of urban dwellers.

Design: Peer-reviewed papers from 1996 to the present dealing with the experience of rural and remote patients and caregivers at the end-of-life compared to that of urban people were extracted for narrative synthesis.

Setting: Rural, remote and urban settings.

Main outcome measure: The experience of patients and caregivers at the end-of-life in rural and remote locations compared to those of urban dwellers.

Result: The 8 papers included showed that palliative needs rural and remote residents are related to context. Diagnosis and treatment are less well managed in rural areas. Rural differences include: people are more accepting of death and less likely to intervene to delay death; caregivers tend to be younger and include friends as well as family and local support networks are important. 

Conclusion: Rural and remote end-of-life needs are shaped by reduced access and availability of services which has a negative influence on outcomes. This is counterbalanced by an acceptance of death and local support networks. Well-designed longitudinal studies with samples comprised of rural and urban residents for comparison, are required to monitor how end-of-life need might change with the approach of death. Clinicians, health services and policy makers need a better understanding of rural attitudes and of how rural community networks mobilise to support end-of-life care in their rural and remote communities.

Presenter Bio: Sue Kirby has been Senior Research Fellow at the Broken Hill University Department of Rural Health for over four years.  Prior to completing her PhD in frequently readmitted chronic disease patient 2012, she worked for two decades in senior management positions in community health and hospitals. She has a deep understanding of the health system spanning primary care, including general practice, and inpatient care. She has a proven research track record in qualitative and quantitative design and implementation covering program evaluation and rural health services research. She has developed and led Research Capacity Building Programs for novice clinician researchers.

“Dying is difficult in any language”: The views of palliative care nurses on barriers to access to palliative care for patients from Culturally and Linguistically Diverse (CALD) backgrounds. 

Lobb, EA1,2,3, Jerzmanowska, N1 Ellis, J1, Green, M,1

1Calvary Health Care Kogarah, NSW, Australia

2 School of Medicine, the University of Notre Dame, Sydney, NSW

3 Cunningham Centre for Palliative Care, Darlinghurst, Sydney, NSW

Background: At Calvary Health Care Kogarah (CHCK) China, Greece, Italy and Macedonia are the top 4 countries of birth for our CALD patient population.  However, we do not have a clear picture of this client group.

Aims:  This study aimed to understand the perceived barriers to access to palliative care by CALD patients and their families.

Methods: Four focus groups were held with palliative care in-patient and community nursing staff and allied health staff (n = 29).

Results: The following themes were identified: language around the disease; building trust; family members living overseas; expectations of families and communities; the role of families in decision-making, managing care, discussing diagnosis and prognosis and the appropriateness of interpreter usage. Language around the disease, in particular use of the word cancer, was noted to be a challenge especially when family members wanted to protect the patient and not have diagnosis or prognosis discussed. The importance of building trust building and rapport and of establishing a relationship before any real communication could occur was highlighted.  This was couched in the knowledge that many cultural groups have come from repressive regimes and trust in institutions or authority was lacking.  Discussions with family members who lived overseas on whether to come to the bedside were difficult especially when the diagnosis or prognosis had not been communicated. Staff commented on the family’s strong expectations of care, but also of the community’s expectation. This was especially noted in terms of providing care, be it in the home, in hospital, or having the patient transferred to a nursing home. Families felt keenly the censure of family and community if expectations around care were not fulfilled. Participants also highlighted that interpreter use was more nuanced than lack of access and related to the issue of family/group decision making in come cultures rather than individual autonomy.  

Conclusion: Focus groups with staff provided a nuanced insight to communication issues.  Participants prefaced their comments that dying is difficult for everyone, regardless of culture. They highlighted not only the importance of communication, but the difficulty when information could not be obtained which was considered important to patient and family care and support.

Presenter Bio: Liz Lobb is Professor of Palliative Care (Allied Health) at Calvary Health Care Kogarah. She has established national and international research collaborations and pursued independent multi-disciplinary clinical collaborations in oncology, haematology, cancer genetics and palliative care for 15 years. This research has enhanced evidence based communication and psycho-social care across the cancer continuum from diagnosis, through treatment, remission and survivorship or relapse, palliative care and bereavement support for families and caregivers.  She has worked clinically as a bereavement counsellor for many years. Her research interests include the communication of prognosis in metastatic cancer, doctor/patient communication, the needs of patients with high grade gliomas and their carers, bereaved carers of women with ovarian cancer, couple communication on end of life issues and persistent grief disorder. 

What are the barriers to providing good end of life care for patients from Culturally and Linguistically Diverse (CALD) communities?

Lobb, EA1,2,3, Jerzmanowska, N1 Ellis, J1, Green, M,1

1Calvary Health Care Kogarah, NSW, Australia

2 School of Medicine, the University of Notre Dame, Sydney, NSW, Australia

3 Cunningham Centre for Palliative Care, Darlinghurst, Sydney, NSW, Australia

Background: While there has been significant development of specialist palliative care services within NSW there is little information available at a patient level that describes how palliative care services impacts on the type and quality of care provided to CALD patients. 

Aims: This study aimed to describe and understand key elements in the CALD patient’s journey in a Specialist Palliative Care Service to: a) explore their clinical experiences; b) identify elements of best practice currently occurring and c) identify opportunities for improvement.

Methods: The medical records of 100 consecutive deceased CALD patients were audited over a 12 month period.

Results: The major barrier to good palliative care was access to a professional interpreter. Over half (55%) were identified as requiring an interpreter on admission, however, professional interpreting services were utilised for only 9%.  Over a third of patients (37%) had family members interpret and 11% used staff.  Family members’ psycho-social distress in the last 7 days of the patient’s life was reported to be higher than patient distress. Almost half (49%) of families were documented as interacting with a social worker and a third of patients. Other barriers to care recorded were language, concern of family members over the patient not eating and bringing in food from home and in some case force-feeding the patient, family reluctance for medication administration, and in some cases the large numbers of visitors. Family reluctance for the patients to be told their diagnosis or prognosis and indeed that they were in a palliative care unit was also noted.  

Conclusion: This data highlights barriers to good palliative care for patients with a CALD background.  The challenges of dealing with a life limiting illness and facing end of life care, the complexity of treatment, navigating services and understanding medical terminology is challenging for most.  Of particular significance for CALD patients and families was the added barrier of language. Strategies to minimise these barriers, in particular access to interpreters; education of staff in the use of interpreters and understanding the concerns of this particular patient group is central to providing good end of life care and support.

Presenter Bio: Liz Lobb is Professor of Palliative Care (Allied Health) at Calvary Health Care Kogarah. She has established national and international research collaborations and pursued independent multi-disciplinary clinical collaborations in oncology, haematology, cancer genetics and palliative care for 15 years. This research has enhanced evidence based communication and psycho-social care across the cancer continuum from diagnosis, through treatment, remission and survivorship or relapse, palliative care and bereavement support for families and caregivers.  She has worked clinically as a bereavement counsellor for many years. Her research interests include the communication of prognosis in metastatic cancer, doctor/patient communication, the needs of patients with high grade gliomas and their carers, bereaved carers of women with ovarian cancer, couple communication on end of life issues and persistent grief disorder. 

Good Relationships- Managing the Transition from the ICU to General Ward for End of Life Care.

Linda Magann CNC Palliative Care1, Sarah Jones CNC ICU, Abby Peacock–Smith CNS ICU, Simone Moran CNS ICU, St George Hospital Sydney

1 Linda Magann CNC Palliative Care, St George Hospital, Gray St, Kogarah 2217, Linda.Magann@health.nsw.gov.au, Ph: (02) 9113 1111 page 502

Background: Managing transition from the Intensive Care Unit (ICU) to a ward bed for end of life care is often fraught with challenges. Ensuring the transition is seamless requires withdrawal of inappropriate interventions, prescribing of appropriate medications for ongoing symptom management and ongoing supportive communication for patients and families. At St George Hospital in Sydney in 2014, 40 patients were referred to the Palliative Care team for end of life care from ICU. 21 died in the ICU, 11 in a ward bed and 7 were discharged.

Aim: To develop and implement a tool to operationalise seamless transfer of patients to the wards for end of life care

Methods: Senior nursing staff from ICU and Palliative Care collaborated to develop an Intensive Care Clinical Business Rule to incorporate the End of Life Care Plan (EOLCP) used hospital wide. Parameters of care as set out in the St George EOLCP were used to alter and reflect the complex nature of ICU patients as they transition from active to conservative care

Results: The completed tool has implemented and evaluation has commenced

Discussion: This process relied on the unique relationship between palliative care and ICU staff

Conclusion: Embedding a change in culture within the ICU to include palliative care takes time and effective communication. Better outcomes for patients and their families is the aim and empowering medical and nursing staff in the ICU to confidently provide good end of life care is paramount to achieving this.

Presenter Bio: Linda Magann has been the Palliative Care CNC at St George Hospital since 2006. Linda has a Masters in Palliative Care and her background is in Oncology and Radiation Oncology nursing. . Linda lectures regularly at the Australian College of Nursing and Sydney University on Communication and Improving End of life care. She has recently taken up the position of the Peritonectomy Palliative Care CNC at St George as 0.5 of her position which has bought with it enormous challenges and many rewards. She hopes eventually that Palliative Care will be integrated into the critical care and surgical arenas as part of normal practice. She is eternally optimistic.

Sleep disturbances in caregivers of patients with advanced cancer: A systematic review.

Ms Kirstin F Maltby – University of Notre Dame Australia, 160 Oxford St, Darlinghurst 2010, Australia. Kirstin.maltby1@my.nd.edu.au, 0433778438

A/Prof Christine Sanderson – University of Notre Dame Australia, 160 Oxford St, Darlinghurst 2010, Australia. Christine.sanderson@health.nsw.gov.au, 02 9553 3111

Prof Elizabeth A Lobb – University of Notre Dame Australia, 160 Oxford St, Darlinghurst 2010, Australia. Liz.lobb@sesiahs.health.nsw.gov.au, 02 9553 3093

Prof Jane L Phillips – University of Technology Sydney, PO Box 123, Ultimo 2007, Australia. Jane.phillips@uts.edu.au, 02 9514 4822

Background:  Sleep disturbances are a common issue found in many caregiving groups.

Aim: To determine the sleep patterns of caregivers of patients with advanced cancer.

Design: A systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement.

Data Sources: A total of eight electronic databases were searched with no date restrictions imposed. Bibliographies of included studies were searched. Search terms included: sleep, insomnia, sleep disturbance, circadian rhythm, caregiver, carer, advanced cancer, palliative cancer, and MESH suggestions. Inclusion criteria required studies to be in English and report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers and dissertations were excluded.

Results: Overall ten studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate-severe sleep disturbance as measured through the Pittsburgh Sleep Quality Index. Second, objective measure of caregivers sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended 8 hours.

Conclusions:  A majority of caregivers of patients with advanced cancer sleep have moderate-severe sleep disturbances with reductions in total sleep time. Additional studies need to explore the predisposing and perpetuating factors of these sleep disturbances so as to find ways to optimize sleep.

Presenter Bio: Kirstin Maltby is a PhD Candidate at the University of Notre Dame Australia in the School of Medicine. Her PhD project is exploring the sleep of caregivers of patients in palliative care for advance cancer. Kirstin has a Masters in Medical Science – Sleep Medicine and post graduate qualifications in psychology, paediatric respiratory and sleep science. Kirstin is dual registered as a Registered Polysomnographic Technologist and Registered Sleep Technologist. 

Carter v.Canada: Perspectives on Physician Assisted Dying.

Linda Ora, Palliative Care Clinical Nurse Consultant, Nepean Blue Mountains Local Heath District, Lawson Community Health Centre 8-12 Honour Ave, Lawson 2783 NSW e linda.ora@health.nsw.gov.au, 0412 263 726

In a momentous decision released in February 2015, the Supreme Court of Canada ruled that the Canadian Criminal Code prohibitions on voluntary euthanasia and assisted suicide violate the Canadian Charter of Rights and Freedoms. As a result, physician-assisted death has now become available in Canada.

While this could be one of the most important decisions ever rendered in Canadian history, very little is known about the Carter decision in Australia. As leading nations in palliative care research, integrated care and best practice models, it is important that Australians working in palliative care reflect on the legalisation of physician assisted death in Canada – a decision which will irrevocably change the landscape of dying.1

The aim of this presentation is to highlight the Carter decision and to consider the implications for care of the dying; and to engage the audience in a balanced discussion on practical and ethical perspectives on the issue of a physician assisted death. The information to be presented has been constructed through the author’s recent observation and participation at various health and palliative care forums in Canada; and through the exploration of the documented commentary of academics, physicians and ethicists on the topic.

This presentation clearly aligns with the Palliative Care NSW State Conference theme of Transforming the Landscape of Dying and aims to:  

  • Outline the Supreme Court decision and the main aspects of the newly developed legislation supporting physician assisted dying in Canada;
  • Explore some of the expert commentary regarding the main arguments for and against physician assisted dying;
  • Detail the proposed safeguards to protect vulnerable individuals; and
  • Highlight the official position of the Canadian palliative care peak bodies on the issue.

This presentation was recently delivered at the 27th Annual Nepean Blue Mountains Supportive and Palliative Care Conference and received excellent feedback. While the focus of the presentation is on the Canadian context, the conversation about physician assisted dying will increase awareness, understanding, and convey the complexity of the issue for the Australian audience.

[1] Sommerville, M.  (2016) Ethics Colloquium, Carter vs Canada: Physician Assisted Suicide in Canada Today – Part 2 Viewed 23 March, 2016

Presenter Bio: Linda Ora is a Clinical Nurse Consultant in Palliative Care in NBMLHD. Linda has 16 years’ experience in palliative care nursing and has worked in both Australia and the UK across inpatient, outpatient, residential aged care and community settings. Last year, Linda was awarded the Judith Meppem Scholarship through the NSW Ministry of Health. Linda chose to undertake a study tour of Canadian hospice and palliative care programs.

Implementing the Palliative Care After Hours Helpline to support Palliative Care patients, their carers and families.

Ms Janelle Painter, Healthdirect Australia, Level 19, 133 Castlereagh Street, Sydney 2000, Janelle.Painter@healthdirect.org.au Phone: (02) 9263 9132; 0403 846 033

Ms Mary Byrne, Healthdirect Australia, Level 19, 133 Castlereagh Street, Sydney 2000, Mary.Byrne@healthdirect.org.au Phone: (02) 9263 9016; 0408 699 221

Ms Louise Farrell, NSW Ministry of Health, 73 Miller Street, North Sydney 2060, louise.farrell@doh.health.nsw.gov.au Phone (02) 9391 9945

The availability of appropriate specialist and primary community services, particularly in rural areas, and after-hours Palliative Care services, often influences whether patients’ wishes to be cared for and to die at home can be fulfilled.

The Palliative Care After Hours Helpline (Helpline) is helping strengthen holistic care of people dying in New South Wales (NSW) by providing professional advice and support for people with a life-limiting condition who prefer to be cared for at home as they approach the end of their life and, where appropriate, preventing people from having to go to hospital.

The Helpline is a free NSW Health service for NSW palliative care patients, their carers, families and health professionals. The Helpline provides more choice about care patients can receive at home by connecting them to additional professional advice and support as they approach and reach the end of their lives. This assists health professionals to enable patients to remain at home, and reduces unnecessary after‑hours visits and presentations at emergency departments. The service commenced in March 2016 and is available during the evenings, on weekends and public holidays.

The Helpline is designed to be complementary to specialist palliative care and other services provided during the day, and other existing after‑hours palliative care arrangements. Continuity of care for the patient is ensured by providing a call summary to the patient’s specified principal healthcare provider.

Calls to the Helpline are managed by registered nurses with training in palliative care who respond to callers using palliative care symptom assessment and management protocols. More complex and sensitive matters are managed by palliative care nurse specialists with expert knowledge, skills and experience.  

The quality and clinical safety of the service is managed under the Healthdirect Australia Clinical Governance Framework with input from metropolitan, regional and rural palliative care clinicians, NSW Health, and the service provider. The aggregated data from calls received will demonstrate how linking with existing health services: NSW Ambulance and the NSW Paediatric Palliative Care Programme enables patient-centred palliative care and ensures that appropriate professional support and advice is provided and personalised to the caller for all NSW demographics.

Presenter Bio: Having worked in healthcare in Australia for over two decades, Ms Janelle Painter has extensive experience in many areas of health delivery including management experience in public health care at the hospital, area health service and national levels. With a Masters in Applied Management in Public Health, as well as post graduate qualifications in Quality Improvement in Healthcare and Critical Care Nursing, Janelle has extensive experience in working in rural communities in NSW. This has been built on over a decade spent as a registered nurse, and has included work in Clinical Governance, Patient Safety, Quality Improvement and health service Accreditation. More recently Janelle also held positions with the Commonwealth Department of Health and the Independent Hospital Pricing Authority. Janelle works within the Clinical Governance team at Healthdirect Australia as the Clinical Policy Analyst for Telephone Services, managing the clinical aspects of Healthdirect’s telephony services including contributing to service development, implementation and ongoing monitoring and improvement, most recently for the new NSW initiative – the Palliative Care After Hours Helpline.

Cancer pain management needs and perspectives of patients from Chinese backgrounds: a systematic review of the Chinese and English literatures.

Xiangfeng Xu1, 6   Tim Luckett2, 6   Alex Yueping Wang3, 6 Melanie Lovell4   Jane L. Philips5, 6

PhD student, Master of Nursing, Graduate Certificate of Critical Care, RN

2 Senior Lecturer, PhD, BSc (Hons)

3 Associate Professor, PhD, MPH, BMed

4 Clinical Associate Professor, PhD, MBBS, Medicine, Northern Clinical School,

   University of Sydney

5Professor, PhD, BSc, RN

6 Current institutional affiliations: Faculty of Health, University of Technology Sydney (UTS), Ultimo, NSW, Australia

Designated corresponding author: Xiangfeng Xu, Xiangfeng.Xu@student.uts.edu.au, Room 300, Bld. 10, Level 7, 235 Jones St, Ultimo, NSW, Australia 2007, +61 2 9514 4474.

Presenting author: Professor Jane Philips, Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney (UTS), Level 3, 235 Jones St, Ultimo NSW 2007 (PO Box 123), Jane.Philips@uts.edu.au, +61 2 9514 4822 or +61 2 9514 4862.

Background: More than half of all cancer patients experience unrelieved pain. Cultural beliefs have potential to influence pain-related behaviours and management. People from Chinese background forms one of the largest culturally and linguistically diverse group in Australia. Understanding of Chinese background cancer patients’ health perspectives and provide culturally sensitive care is essential to ensure effective pain control.

Aims: To explore pain management perspectives and needs of cancer patients from Chinese backgrounds as well as barriers and facilitators for optimal cancer pain management.

Methods: A systematic review of peer reviewed articles published in English or Chinese journals (January1990 to August 2015) about self-reported pain management perspectives of adult cancer patients from Chinese backgrounds.

Results: Of 3,904 identified articles, 23 (English n=15 and Chinese n=8) met the inclusion criteria. These articles reported primary data from 19 studies involving cancer patients (n=6,008) from Hong Kong, Taiwan and mainland China. Nearly all patients (83.5% inpatients and 100% outpatients) experienced some level of unrelieved cancer pain. A reluctance reporting pain and/or undertake analgesics were the main sources of unrelieved pain, which was linked to patient (e.g. pain endurance belief), family (e.g. side-effective concerns), health provider (e.g. poor communication), and system (e.g. lack of access to analgesics) related barriers. Very few studies reported the patients’ traditional Chinese mediation needs and no studies explored the perspectives of Chinese migrants.

Discussion/Implications for practice: The patient related barriers may stem from the beliefs of Taoism/energy, Buddhism and/or Confucianism. Family’s pain beliefs have strong influence on the patients’ pain control, since the health decisions are made on a family consensus. The cultural beliefs and social concerns often prevent the patients speak out the presence of pain, which has implications for how health professionals engage family members in shared decision-making regarding pain management.

Conclusion: While the patient related barriers to pain management are similar in Chinese and Western context, the beliefs underlying these barriers may differ which demands future research to inform culturally sensitive approach and to understand any additional barriers in Chinese migrants.

Presenter Bio: Professor Jane Philips, PhD, BSc, RN currently holds the following positions:

Director, Centre for Cardiovascular and Chronic Care Faculty of Health | University of Technology Sydney

Assistant Editor, Journal of Chronic Illness

Editor, Collegian: The Australian Journal of Nursing Practice, Scholarship & Research

Editorial Board, International Journal of Palliative Care

Visiting Professor, School of Medicine, Sydney University

Adjunct Professor, School of Nursing, University of Notre Dame Australia – Sydney

Honorary Professor, School of Nursing, Hong Kong Polytechnic University

President, Palliative Care Nurses Australia  

What can we learn from family caregivers about hope during a home death?

Matra Robertson, PhD, MSW; Rod MacLeod, MNZM PhD, FAChPM; Wendy Duggleby, PhD, RN, AOCN

Introduction: In palliative care home deaths are considered as a desirable outcome. Palliative care services focus on relieving the spiritual, psychological and physical suffering of people who are dying and support their family caregivers. One aspect of palliative care little studied, are the potential spiritual, psychological and physical factors that support hope during a home death.

Objectives: To report on preliminary data drawn from a study in progress on family caregivers’ experiences of hope during a home death.

Approach: A preliminary analysis of interviews is reviewed emphasising data from family caregiver’s interviews. This is presented alongside the spiritual, psychological and physical factors that support hope during a home death and what in health care was reported as averse to hope.

Practice implications: Multidimensional factors that support the hopes of people who are dying and their family caregivers are not well recognized in palliative care. Understanding the experiences of hope during a home death provides direction for interventions in clinical practice that are informed by people who are dying and their family caregivers. We have the assumption that clinical interventions conceptualized by people who are dying and their families, develop a better fit. This study provides a rich source of learning to enlarge our understanding of home death and hope.

Funding: This study was funded by New South Wales Health, Australia.

Presenter Bio: Matra Robertson, PhD, MSW. Dr Robertson is an interdisciplinary researcher interested in exploring dying people and their family’s experiences of health care. A Life Member of the Social Work and Palliative Care Network of the United States of America and past recipient of the Ogilvie Palliative Care Award for excellence in research, Matra is particularly interested in the dimensions of hope in end of life care.

Ambulances and palliative care patients.  A study of NSW Ambulance Palliative Care Plans, and their impact on patients’ experience of crisis. 

Sanderson, C1,2,3  Comans, T4 Lobb, EA1,2,3 Shiels M5, Goodwin B5, Loudfoot A5, Liauw W 6,7  Links M6,7,  Davis JM1,6,7,  O’Keefe V. 8

1Calvary Health Care Kogarah, NSW, Australia

2 School of Medicine, the University of Notre Dame, Sydney, NSW

3 Cunningham Centre for Palliative Care, Darlinghurst, Sydney, NSW

4 School of MedicineGriffiths University, QLD

5 NSW Ambulance

6 The Sutherland and St George Hospital Cancer Services, NSW

7 School of Medicine, University of NSW

8 Health care consumer

When an ambulance attends a palliative care patient, paramedics have very little discretion about whether or not to treat or transport the person, even when there is an advance directive in place.  Unwanted resuscitation and admissions to hospital sometimes occur as a result.

In response to this problem, NSW Ambulance developed Authorised Care Plans for palliative care patients, so that their wishes about resuscitation and treatment and a specific management plan can be recorded and flagged in the ambulance computer system.  These Ambulance Palliative Care Plans (APCPs) are increasingly being regarded as an essential part of an advance care plan for community palliative care patients.  Since their initial piloting they have not been evaluated in detail.

A study of the implementation of APCPs by a regional palliative care service is being undertaken in the southern sector of SESLHD, involving Calvary Kogarah and two regional teaching hospitals.  It will investigate the process of documenting an APCP from the point of view of both patients and clinicians, the triggers and barriers to setting up these plans, and how they are perceived by patients and their families.  Interviews will be done with patients and families after any ambulance call out, to understand the effects of having a plan in place.  A health economic analysis will also be undertaken, to identify the potential costs and benefits, and particularly to understand and quantify the potential for avoiding unwanted admissions to emergency departments.   Future studies are also planned to understand the impact on NSW Ambulance of greater uptake of these plans, and to understand the needs and concerns of paramedics who in future may become  increasingly involved in providing care for palliative care patients in crisis.

The study is in progress and is due to report in 2017.  Methodology of the study and preliminary data from the project will be presented.

Presenter Bio: A/Professor Christine Sanderson is a palliative care researcher and clinician based at Calvary, Kogarah.  She has also worked as part of the CareSearch team for 10 years.  Her background is in sociology and pubic health. She has interests in health services research, public health, and knowledge translation, and how palliative care research can be used to make a real difference to the experiences of patients at the end of life, and to change the culture of health care systems.

Transforming the Landscape of Dying – Establishing a new Palliative Care Unit (PCU).

Mary Trotter CNE Palliative Care, Susan Carter RN, Linda Varady EEN

Wauchope District Memorial Hospital, Sub-Acute Palliative Care Unit, 69 High Street, Wauchope NSW 2446, email: mary.trotter@ncahs.health.nsw.gov.au, 02 6580 8040.

The Palliative Care service Overview 2008-2009 demographic and epidemiological data identified population trends that were likely to increase the demand for palliative and end-of-life care within the North Coast Area Health Service (NCAHS). In response to the Department of Health Garling review in Nov 2008 and in alignment with NCAHS strategic planning it was proposed to establish 6 dedicated Palliative Care beds within Wauchope District Memorial Hospital (WDMH) to provide a group of services in the continuum of care required for patients experiencing a life-limiting illness within the Hastings Macleay Clinical Network (HMCN).

Initial in-patient palliative care services commenced in 2010 with six beds allocated within the main hospital where the dedicated Palliative Care multidisciplinary team cared for patients in challenging conditions. The need to “Transform the Landscape of Dying” was immediately evident and with support from the team, management, community and local Palliative Care services planning began to remodel the service and accommodate patients requiring palliative care and their families in an appropriate and supportive environment.

Building commenced in late 2012 and the 8 bed specialty sub-acute PCU opened in July 2014.

For patient’s end-of-life preferences and needs to be fulfilled, all members of the interdisciplinary team including the patient, family and carer are required to work together effectively. Enhanced collaboration and teamwork across boundaries was essential in promoting improvement of the patient experience and continuity of care for the palliative patients across the HMCN.

The establishment of firm connections between the PCU team, the Port Macquarie Base Hospital (PMBH) after-hours medical registrars, a variety of allied health and community support services and volunteers ensures a consistent and seamless palliative care service across settings responsive to the needs of patients and their carers.

Consistent improvement in patient outcomes and experience has been demonstrated in Palliative Care Outcome Collaboration (PCOC) data, reduced need for transfer of patients at end-of-life, staff and patient survey data and individual patient stories collected. The evaluation of the unit will continue with ongoing feedback from regular staff and patient surveys and patient stories collected for our Essentials of Care and Quality Improvement Plans.

Presenter Bio: With a Nursing career spanning over 30 years and in various roles I have been involved in the transformation of palliative care delivery within the Hastings Macleay Clinical Network from initial planning in 2009 for designated Palliative Care Beds within our small rural hospital to the establishment of the current purpose built 8 bed sub-acute Palliative Care specialty unit in 2014. Appointed as Clinical Nurse Educator for the Palliative Care Unit in 2015 I am focused on providing ongoing continuous improvement and collaborative multidisciplinary care to enhance the patient centred health journey across settings within the Hastings Macleay Network.

Listen, Acknowledge, Respond: addressing the mental health Treatment Gap.

Julianne Whyte, CEO Amaranth Foundation, 23 Riesling Street, Corowa, 2646, 0408 388 533, julianne.whyte@amaranth.org.au.

Sadness, social withdrawal, depression, loss of hope; if a healthy person experiences any of these feelings, the health care system has well established processes and services to treat them. Why then do we accept this as ‘normal’ and ‘to be expected’ for those facing their last days. Our research shows mental illness in the terminally ill is underdiagnosed and undertreated – it’s a “Treatment Gap”.

Our previous research trialled a trans-disciplinary social work approach to palliative care that integrated mental health screening and treatment. The impact on clinical and emotional outcomes for patients, their family and caregivers was then evaluated using qualitative, informal, semi-structured interviews with patients, carers, family members and service providers. The trial found symptom management typically takes precedence in palliative care, with MH referrals occurring late in the disease trajectory when they are acute or crisis driven, missing an opportunity to enhance quality of life while there was still life to be lived. Participants reported they valued the psychosocial support provided, their distress had been greatly reduced, and their coping in the bereavement period enhanced.

While research shows the mental wellbeing of palliative care patients significantly impacts their quality of life while dying, addressing these needs takes specialist skills: the “pat on the back” approach is not enough and healthcare workers admit they need more guidance. These findings also informed the current Commonwealth-funded Listen Acknowledge Respond project which will upskill healthcare professionals to screen, assess and treat MH in the last 400 days of life, and measure the impact of this.

Through sharing research outcomes (both completed and research in progress) and the stories of patients, their family and caregivers, this presentation will demonstrate that trans-disciplinary teams with specialist knowledge in adapting traditional mental health interventions provide better holistic care and deliver better outcomes for patients and their family and caregivers.                                                      

Presenter Bio: Julianne Whyte is the CEO and founder of the Amaranth Foundation, which provides psychological interventions and psychosocial support to people, their family and carers living with a life limiting or serious advanced illness. Julianne has worked extensively in rural communities for the past 30 years as a Nurse and accredited Mental Health Social Worker. She is currently undertaking her PhD through Charles Sturt University, researching rural models of care planning for people living with life limiting and terminal illness, and has twice received Department of Health and Ageing Local Palliative Care Program grants. Julianne has recently been accepted into the College of Social Work. 

POMSNAME: A tool to promote quality assessment in palliative care.

Ms Kerrie Womsley, Clinical Nurse Consultant Palliative Care, Hoxton Park Community Health Centre, 596 Hoxton Park Rd, Hoxton Park NSW 2171, Kerrie.Womsley@sswahs.nsw.gov.au, 02 9827 2222.

Dr Ann Dadich, Senior Lecturer, Western Sydney University, School of Business, Locked Bag 1797, Penrith NSW 2751, A.Dadich@westernsydney.edu.au, 02 9685 9475.

Mr Michael Hodgins, Research Assistant, Western Sydney University, School of Business, Locked Bag 1797, Penrith NSW 2751, M.Hodgins@westernsydney.edu.au, 02 9685 9475.

Ms Noemir Gonzalez, Clinical Nurse Specialist Palliative Care, Hoxton Park Community Health Centre, 596 Hoxton Park Rd, Hoxton Park NSW 2171, Noemir.Gonzalez@sswahs.nsw.gov.au, 02 9827 2222.

Ms Valerie Weller, Clinical Nurse Specialist Palliative Care, Hoxton Park Community Health Centre, 596 Hoxton Park Rd, Hoxton Park NSW 2171, Valerie.Weller@sswahs.nsw.gov.au, 02 9827 2222.

Ms Cindy Van, Clinical Nurse Specialist, Hoxton Park Community Health Centre, 596 Hoxton Park Rd, Hoxton Park NSW 2171, Cindy.Van@sswahs.nsw.gov.au, 02 9827 2222.

With the introduction of electronic medical records in health services, documentation has never been more scrutinised. This is because accurate and in-depth clinical documentation is deemed vital for consistent quality care. This is particularly important in palliative care where multiple symptoms need to be addressed within a single clinical encounter. To improve the accuracy and comprehensiveness of palliative care documentation in community health, the acronym, POMSNAME, was devised as a memory aide to prompt the assessment of: Pain, Orientation and Oral, Mobility, Social, Nausea and vomiting, Appetite, Medication, and Elimination. Accordingly, the aim of this quality improvement exercise, which remains in progress, is to determine the effectiveness of the POMSNAME acronym to improve palliative care documentation and subsequently guide assessment in a community health centre.

Palliative care case-notes were audited one month before (n=56) and palliative care case-notes were audited one month after (n=48) the acronym was introduced to 13 community health nurses. Case-notes were audited for the documentation of each item before and after one-month.

The results from this audit suggest that reference to 8 of the 9 POMSNAME items in case-notes increased over the one-month period. The documentation of Orientation (23.4%), Mobility (27.7%) and Social issues (39.3%) saw the greatest increase, while Medication (-2.1%) was the only item to decrease.

The improvement of palliative care documentation in 8 of 9 items demonstrates the potential of the POMSNAME acronym as a memory aide. Structuring the documentation in this way guided a holistic assessment, particularly among clinicians with limited palliative care experience. Further research is needed to determine whether and how other domains warrant inclusion, including (but not limited to) respiratory issues, sexual health, and spirituality.

Presenter Bio: Ms Kerrie Womsley is a Community Palliative Care Clinical Nurse Consultant in south-western Sydney. She provides exceptional clinical leadership to a high-performing team of community health nurses, aptly demonstrated by her commitment to superior palliative care. Ms Womsely has significant experience across a range of healthcare settings as a nurse unit manager, discharge planner, and clinical nurse educator. She: champions quality improvement initiatives in the delivery of palliative care; has established durable partnerships across the primary, secondary, and tertiary sectors of healthcare; and above all, is a strong advocate for clients and their families.