Friday Presentations

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:

The unmet palliative care needs of residents in residential aged care facilities: What a scoping study can tell us about future needs.

Backhouse, C1, Lobb, EA 1,2,3 Davis, JM1, Oehme, J.1

1Calvary Health Care Kogarah, NSW, 2217, Australia

2 School of Medicine, the University of Notre Dame, Sydney, 2010, NSW

3 Cunningham Centre for Palliative Care, Darlinghurst, Sydney, 2010 NSW

Background: The majority of Australians living permanently in RACF’s are over 85 years, have one or more life threatening conditions, high levels of care needs and are likely to die within months of their admission. Calvary Health Care Kogarah (CHCK) provide a consultative palliative service to the Residential Aged Care Facilities (RACFs) in South Eastern Sydney Local Health District (SESLHD) and are aware that the service does not adequately meet their clients’ palliative care needs.

Aims: A scoping study was conducted over the period March – June 2016. The aim was to: a) identify gaps in the provision of RACF palliative care services; b) examine patterns of care and referral; c) explore the criteria used by RACFs to identify deteriorating residents; d) and explore general practitioner (GP) response to palliative needs. Methods: 60 RACFs were identified and interviews conducted with staff in 47 facilities (78%) either by phone or email.

Results: Preliminary data indicates that RACFs identified the main barriers to the provision of palliative care as the inability of Community Palliative Care Team to respond in a timely manner (n=19), a lack of knowledge of palliative care by GP’s and a reluctance by them to refer to Specialist Palliative Care services (SPCS) (n=18), and family reluctance to accept a palliative approach to care (n=14). Most facilities interviewed did not use a validated method of detecting the deteriorating client. Many had inaccurate concepts of a “palliative approach” or specialist palliative care.  Most felt that “very few” of their residents were on a “palliative approach” although statistics show that ‘the majority of Australians living in RACF’s are likely to die within months of their admission.

Conclusions:  These results suggest the need to transform clinical care of the elderly by improving palliative communication with and education of GP’s, staff and families. This will build capacity within facilities to manage palliative residents in an efficient and effective manner that has the dying person comfortable throughout the course of the dying process as well as limiting admissions to emergency departments and improving confidence in care for both clients and families.

Presenter Bio: Clare Backhouse is a Clinical Nurse Specialist in the Community Palliative Care Team at Calvary Health Care Kogarah. She has more than 20 years’ experience in all aspects of cancer nursing including more than 10 years in palliative care including clinical, education and management roles. She has a Master’s degree in the Professional Studies of Nursing and has recently completed a Graduate Diploma of Counselling. In her current role, she provides consultative support on clinical issues to RACFs liaising with the acute services/palliative care, GP’s families and RACFs. 

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.

“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. 

Randomised double blind placebo controlled phase II trial of melatonin for prevention of delirium in inpatients with advanced cancer.

Agar M,1,2,3 Lawlor P,4 Caplan G,5 Ely EW,6 Lam L,1 de Souza P,2,7 Nikles J,8 McCaffrey N,9 Bush S,4 Draper B,10 Sanderson C,11 Luckett T,1 Rowett D,12 Philip J,13 Chye R,14 Le B,15 Martin P,16 Clark K,17 Bellemore F,14 Byfieldt N,17 Chambers J,14 Dowd A,16 McCarthy G,15 Petrie N,18 West P,14 Wilcock J,18 Currow D 9

Affiliations:

  1. Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney (UTS), Ultimo, New South Wales (NSW) Australia
  2. The Ingham Institute of Applied Medical Research, Liverpool, NSW, Australia
  3. South West Sydney Clinical School, University of New South Wales (UNSW), New South Wales (NSW), Australia
  4. Bruyere Continuing Care, Bruyere and Ottawa Hospital Research Institutes, Division of Palliative Care, Department of Medicine, University of Ottawa, Ontario, Canada
  5. Department of Geriatric Medicine, Prince of Wales Hospital and Prince of Wales Clinical School, UNSW, NSW, Australia
  6. School of Medicine, Vanderbilt University, Tennessee, USA
  7. School of Medicine, Western Sydney University, NSW, Australia
  8. Faculty of Medicine and Biomedical Sciences, University of Queensland, Queensland, Australia
  9. Palliative and Supportive Services, Flinders University, South Australia, Australia
  10. School of Psychiatry, UNSW, NSW, Australia
  11. School of Medicine, University of Notre Dame, NSW, Australia
  12. Pharmacy Department, Repatriation General Hospital, South Australia, Australia
  13. Palliative Medicine, St Vincent's Hospital, Melbourne, Victoria, Australia
  14. Sacred Heart Supportive and Palliative Care Service, St Vincent’s Hospital, NSW, Australia
  15. Palliative and Supportive Care, Royal Melbourne Hospital, Victoria, Australia
  16. Department of Palliative Care, Barwon Health, Victoria, Australia
  17. Palliative Care, Calvary Mater Hospital Newcastle, NSW, Australia
  18. Palliative Care, Braeside Hospital, NSW, Australia

Background: Delirium is a prevalent in advanced cancer and associated with high morbidity and mortality. Emerging evidence suggests circadian system desynchrony and low melatonin levels contribute to pathophysiology. Previous clinical trials support melatonin as a safe preventative agent in hospitalised elders. A study was designed to inform feasibility, methods and sample size for a future phase III trial of melatonin for preventing delirium in inpatients with advanced cancer.

Method: This study was a randomised double blind placebo controlled phase II trial. Advanced cancer inpatients were randomised to 2mg slow-release melatonin or placebo nocte throughout their inpatient stay. Outcomes included: percentage patients randomised completing and eligible patients randomised; safety; and preliminary data on delirium prevention rate.

Results: The target sample size of 30 was attained within 8 months of the first randomisation, with 33% eligible patients randomised. 67% completed to discharge or delirium occurrence. Adverse events (4 in melatonin arm) were not related to the intervention. Delirium incidence was 7% in the intervention arm and 25% in placebo, with time to delirium in each case being 2 (2 cases), 9 and 17 days for controls, and 7 days for the treatment arm.  

Conclusion: This pilot provided evidence for feasibility and has informed fine tuning of eligibility criteria and methods. The study intervention was well tolerated and showed sufficient potential to move to a Phase III RCT. Results suggest a lower incidence of 4.5/1,000 population-days in the melatonin arm.

Presenter Bio: Dr Tim Luckett is a senior research fellow at the Centre for Cardiovascular and Chronic Care, UTS Faculty of Health. He is interested in developing and evaluating complex interventions for people with life-limiting illnesses and their families. Originally a speech and language pathologist, Tim has experience in both quantitative and qualitative research methods, especially outcome measurement and systematic reviews.

Implementing facilitated case conferencing for people living in aged care with advanced dementia – benefits, barriers and facilitators.

Prof Meera Agar,1,2,3 Dr Tim Luckett,1 Dr Georgina Luscombe,4 Prof Jane Phillips,1 Prof Elizabeth Beattie,5 Prof Dimity Pond,6 Prof Geoffrey Mitchell,7 Prof Patricia M Davidson,8 Ms Janet Cook,9 Ms Deborah Brooks,5 Dr Jennifer Houltram,9 A/Prof Stephen Goodall,9 Prof Lynnette Chenoweth10

Dr Tim Luckett, Faculty of Health | University of Technology Sydney, Level 7, 235 Jones St, Ultimo NSW 2007 (PO Box 123), T +61 2 9514 4861 E tim.luckett@uts.edu.au 

Affiliations:

  1. Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney (UTS), NSW, Australia
  2. South Western Sydney Clinical School, University of New South Wales, NSW, Australia
  3. Ingham Institute of Applied Medical Research, NSW, Australia
  4. Sydney Medical School, The University of Sydney, NSW, Australia
  5. School of Nursing, Queensland University of Technology, Queensland, Australia
  6. School of Medicine and Public Health, The University of Newcastle, NSW, Australia
  7. Faculty of Medicine and Biomedical Sciences, The University of Queensland, Queensland, Australia
  8. School of Nursing, Johns Hopkins University, Maryland, USA
  9. Centre for Health Economics and Research Evaluation (CHERE), Faculty of Business, UTS, NSW, Australia
  10. Centre for Healthy Brain Ageing, University of New South Wales, NSW, Australia

Methods: This study was a qualitative sub-study of a cluster randomized controlled trial called the IDEAL Project. In each of 10 intervention facilities, registered nurses worked as Palliative Care Planning Coordinators (PCPCs) two days a week for 18 months. They facilitated family case conferences and trained nursing home staff in person-centred palliative care. Perceptions of FCC as a “whole package” and the PCPC role in particular were evaluated using semi-structured interviews with PCPCs, facility staff and physicians. Analysis used a thematic framework approach with two researchers coding independently and then agreeing codes and themes.

Results: Interviews were conducted with 11 PCPCs, 18 nurses, 8 allied health staff and 3 physicians. Perceived benefits of FCC included better communication between staff and families, multi-disciplinary involvement in care planning, improved staff knowledge and attitudes, and improved palliative care resources. Barriers in various facilities included resistance from management, staff and GPs, time pressures and staffing levels, and PCPC/staff lack of confidence. Facilitators included positive family feedback and funded time and training for the PCPC role.

Conclusion: The success of FCC varied according to support from management and staff, and whether facilities had a culture of collaboration and quality improvement. The Australian aged care sector’s current policy environment and business model mean that, in most facilities, case conferencing is unlikely to receive the levels of nursing qualification, training and time needed to optimise benefits. Future studies should document resident and family perceptions of case conferencing, as consumer advocacy will be an important driver for improvement. 

Presenter Bio: Dr Tim Luckett is a senior research fellow at the Centre for Cardiovascular and Chronic Care, UTS Faculty of Health. He is interested in developing and evaluating complex interventions for people with life-limiting illnesses and their families. Originally a speech and language pathologist, Tim has experience in both quantitative and qualitative research methods, especially outcome measurement and systematic reviews.

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.

Transforming Clinical Care: One year of After Death Audits in a Residential Aged Care Facility (RAC).

Larissa B McIntyre FACN & Rita C Taylor RN

BaptistCare Orana Centre, 193-201 Brisbane Water Drive, Point Clare NSW 2250, (B) 4337 5425 (M) 0438 416 006, (e) lmcintyre@bcs.org.au

AIM: Our facility was the pilot site for the trial the After Death Audit tool (1) for a 12-month period.  This was an objective of the organisation’s Palliative Care Strategic Plan 2014.  This enabled us to measure our end of life care delivery and to address any shortfalls identified by the audit. 

BACKGROUND: BaptistCare has been providing aged care (residential & home based) & community services across NSW & ACT for more than 70 years.  It currently operates 17 residential facilities with approximately 1800 beds. 

Recognising that palliative care and end –of – life (EOL) care is core business for RAC; BaptistCare began to ask how palliative care services could be better delivered across all their RAC sites to ensure a consistent & high quality delivery of care in keeping with the evidenced – based approach of the Palliative Approach Toolkit (2012).

A multifaceted approach was taken to develop the strategy beginning with the identification of the principles of practice, research to inform the scope utilising current state & national documents, a comprehensive audit undertaken across all BaptistCare RAC.  The BaptistCare Palliative Strategic Plan was released in 2014 and part of the plan included incorporating the After Death Tool into RAC clinical practice.  

OUTCOME: At the time of writing, audits had been undertaken on all deaths in the facility.  During this time the original audit tool was reviewed to include additional information to capture length of stay; as this has been identified to be significant change in residential care over the last 5 – years.  Further information regarding the type of admission was also included to differentiate between Respite or Permanent; this data highlights those people who choose to use RAC for their EOL care as opposed to remaining in the acute care sector or dying in “their own home”.  This data opens up the need for robust discussion for a Palliative Care payment for RAC.

REFERENCES: National Palliative Care Program. (2013). Residential Aged Care Pallaitive Aproach Toolkit. Queensland: The University of Queensland &, Blue Care Research & Practice Development Centre.

Presenter Bios:

Larissa B McIntyre – I am an operational aged care manager. I have a passion for palliative care and advanced care planning.  I strive to deliver care in a framework of safety, quality and dignity.  I more than 27 years as a RN and have worked across multiple sectors including clinical, education & management roles.

Rita C Taylor – I am an operational aged care manager. I have a passion for providing person-centred care in an environment of continuous improvement & innovation. I have many years in aged care in a number of roles including clinical, education & management roles. I have previously worked in the disability sector in Australia & overseas.

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.

Ethical considerations of a longitudinal study of informal care networks across rural and remote NSW.

Dr Emily Saurman, Research Fellow-Rural Health; Broken Hill University Department of Rural Health, Corrindah Court PO BOX 457, Broken Hill NSW 2880; emily.saurman@sydney.edu.au 08 8080 1206.

Dr Emma Webster, Senior Lecturer Rural Research; School of Rural Health, Sydney Medical School, 11 Moran Dr, Dubbo NSW 2830; emma.webster@sydney.edu.au 02 5809 9423.

A/Prof Megan Passey, Deputy Director Research; University Centre for Rural Health Lismore, 61 Uralba St, Lismore NSW 2480; megan.passey@sydney.edu.au 02 6620 7516.

Prof David Lyle, Head of Department; Broken Hill University Department of Rural Health, Corrindah Court PO BOX 457, Broken Hill NSW 2880; david.lyle@health.nsw.gov.au 08 8080 1200.

Background: The lack of suitable specialist Palliative and End of Life Care (PEoLC) services in many rural and remote communities already places an increased demand on informal carers and primary care services compared with their urban counterparts. Informal care networks are composed of healthcare providers and volunteers as well as a patient’s family and friends. They have become integral in providing care in rural and remote communities around Australia, but we do not yet know how these networks evolve, function, and respond to the escalating need for care and support for people with complex health problems nor how they impact the healthcare system. A longitudinal mixed method Project is being developed to examine rural and remote PEoLC informal care networks across rural and remote NSW during the progression of a life-limiting illness, through death, and into bereavement. This paper aims to review the ethical considerations of this study and the broader implications for palliative care research.

Methods: This is a synthesis of a review of published literature on palliative care research ethics and informed by project development discussions.

Key Findings: Conducting research with patients who are dying and their carers is privileged and demands sensitivities to produce the knowledge that will progress the provision of quality palliative and end of life care in the future. Matters of context, language choices, and even the timing of the research activity can be fraught with ethical concerns that inform our approach in order to minimise burden. Longitudinal research specifically is not a common design for palliative and end of life research. It brings an element of progression and continual contact with patients and carers requiring rigorous justification and trust beyond a standard research project. There are also ethical concerns relevant to responsibility and care of the researchers as they will develop relationships with the participants and possibly grieve as well. While there is evidence to support the conduct of palliative and end of life research as well as interest from palliative patients and carers to participate in research activity, there is still a necessary recognition that we are working within the context of dying which demands responsiveness and flexibility not often relevant in other fields of research.  

Presenter Bio: Dr Saurman is a full-time Research Fellow-Rural Health with the Centre for Remote Health Research in the Broken Hill University Department of Rural Health. She has been a rural health researcher since 2008; trained in medical ethics, public health, and research methodologies. She has recently been conferred her PhD in rural health service research. Dr Saurman has published 14 journal articles, book chapters, and reports, 11 of these in the last 5 years.

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.

“The Good, the Bad and the Ugly” – how caring for my dying relatives changed me as a palliative care nurse.

Kathleen Wurth, Clinical Nurse Consultant – Palliative Care

Port Kembla Specialist Palliative Care Community Service, 80-91 Cowper Street Port Kembla, NSW 2505, kathleen.wurth@sesiahs.health.nsw.gov.au, 0412117180,

This presentation addresses the Conference theme of transforming care holistically as I outline caring for my dying parents in my home over a decade ago. My experience as a seasoned palliative care nurse caring for my own family members taught me more than any text book, university, or professional development course. It taught me about vulnerability, and what it is to face the death of my parents and other relatives. My parents chose to live with me and I had a dual perspective of being a daughter and clinician receiving “support” from formal services. Being on the receiving end of palliative care support services and hearing the “script” and the jarring lectures has given me pause and reflection to my own approach and practices. The intimacy of visiting dying patients in their own home is sacred territory. Entering family systems and relationships is profound and integral to impeccable care of the dying patient. Connection, communication and compassion are cornerstones to the human business of grieving and dying. This presentation will provide a narrative of my experience caring for my mum and dad as they came to the end of their respective illnesses and the interface with the palliative care service. Some of those experiences were patronising and judgemental and others were completely humbling and exquisite. These times influenced my bereavement, my memories and my career.

Presenter Bio: Kathleen Wurth is a community palliative care nurse consultant and has worked in a various settings and roles, including researcher, clinician, manager, end of life coordinator and educator. Her passion is in care of patients, families and staff during end of life phases. She describes herself as a “bedside nurse” and works to optimise compassionate and competent end of life care. Kathleen has a Research Master In Clinical Nursing (Palliative Care) which explored the meaning of photographs to palliative care patients and she is also a creative writer and wannabe film director. Kathleen is often heard saying “You only die once – lets get it right”. Kathleen brings an energy and passion in her care of the dying and is driven to support and collaborate with families and staff in providing good EOL care.