Background: Chronic obstructive pulmonary disease (COPD) is a chronic, debilitating lung condition with a high mortality rate. Our research has shown that healthcare for end-of-life COPD is poorly integrated and delivered. The involvement of those with severe COPD, their support people and health professionals in the design of healthcare services may improve the delivery of care for advanced COPD, including identifying system-level responsiveness to quality improvement.

Design: Focus group study including stakeholders of healthcare services (patients with end-of life COPD, support people, bereaved family members, Māori and Pasifika consumers, and community- or hospital-based health care professionals). 

Methods: We conducted qualitative analysis using structural and descriptive coding, then pattern coding. Findings were triangulated among investigators. The research positioned people with severe COPD, their support people and health professionals as experts in end-of-life care services for this population. Critical theory and Actor-Network theory informed the data coding analysis. 

Results: Seven focus groups involving 74 participants reported their experiences of end-of-life care for COPD. Five themes related to healthcare systems responses to improving care quality were described: governance, system integration, resource design and development, standardisation of processes and communication. 

Conclusion: Stakeholders provided multiple healthcare system-level responses to end-of-life care in COPD that could improve services. These improvements may inform health funders and providers when considering clinical quality improvement and system design for end-of-life COPD.

Background 

Palliative care family meetings (PCFMs) are a means of education, emotional support, and detailed care planning. They provide an opportunity to explore issues that could significantly affect the experience and memory of the dying. This presentation provides the qualitative findings of an ARC-funded sub-study of PCFMs for cancer patients at two Brisbane hospitals [1]. 

The aim of this presentation is to explore how cancer-specific PCFMs intersect with the broader health system; to understand ways to support quality improvement in PCFMs; to strengthen support for the dying, and to enhance clinical palliative care tools and environments. 
 

Research design  

Analysis and interpretation of the dataset is guided by Actor-Network Theory. 

114 interviews involving 39 clinicians, 9 patients and 21 carers, with diagnoses including motor neuron disease and cancer. This resulted in a total of 114 transcripts and 13 video-recordings. Nine meetings focused on patients with cancer.

 

Each cancer PCFM was observed repeatedly on video and in transcript, identifying various medical staff, languages, environments, movements, tools, and practices within the field. Intensive field noting and annotation were employed to initially organise the data. Raw data were then coded and thematized consistent with the principles of the underlying Actor-Network Theory. 
 

Findings 

Twelve key themes were identified, which collectively provide a nuanced description and signpost areas of practice and policy that require closer attention. These include home or family, alongside an understanding of community support or the role of pain and pain relief. 
 

The findings indicate there are valuable ways to conduct important conversations around death and dying, and alternatives that could improve current approaches. The findings intersect with the known challenges of our current health system, providing further opportunities to strengthen the provision of palliative care.

 

1.            Kirby, E., et al., Hopeful dying? The meanings and practice of hope in palliative care family meetings. Soc Sci Med, 2021. 291: p. 114471-114471.

WA Country Health Service (WACHS) Palliative Care Afterhours Telehealth Service (PalCATS) aims to improve equity of access to specialist palliative care for rural and remote communities and address the identified gaps associated with remote communities across WA having access to specialist palliative care services (SPC). New digital capabilities coupled with clinical expertise aims to respond to the clinical and psychosocial needs of patients and carers by providing virtual care (video-enabled consultation and care) to all smaller WACHS facilities. PalCATS is currently expanding the model into the regional resource centres and Multipurpose Sites, a total of 78 WACHS hospitals. This innovation aligns clinical, patient and carer management with Goals of Patient Care (GoPC) and provides support to the patients, carers and provide specialist support to generalist staff.

Aim

A study has been undertaken to understand the impact of PalCATS on identifying and managing specific domains of palliative care support to patients and their carers, including GoPC and providing specialist support to the generalist workforce.

Method

A mixed methods analysis of the first 100 PalCATS referrals included data from the comprehensive assessment form detailing clinical, psychosocial and cultural domains as well as recent history from the available shared palliative care databases used across WA, and Palliative Care Outcomes Collaboration.

Results

The results identified key interventions required including symptom management (50%), terminal care (15%), revisiting GoPC (73%), psychosocial support (40%) and the need for capacity building for generalist colleagues. Using an innovative assessment protocol, previously unknown palliative care patients to the regional Palliative Care Service were identified (39% of those seen) and who were then able to be referred to the local specialist teams.

The first 100 patients seen by PalCATS had an age range of 41-101 years, were often almost bedbound (60% had AKPS < 60), over half were deteriorating from their underlying illness and 21% were actively dying. Over half had symptom distress rated as moderate or severe and the required updates to their Goals of Patient Care documentation was required to better reflect current preferences. Family support was also provided for 63% of patients seen.

In conclusion the data demonstrates that PalCATS is contributing to improved patient and carer outcomes and continuity of care in line with GoPC. Further study will identify potential areas of need, including pandemic related staff shortages and opportunities to provide multidisciplinary support for psychosocial care using telehealth innovations (e.g. counsellors, spiritual care practitioners) as these services are very difficult to access as outpatients or in the home in regional locations and are vital to supporting patients’ quality of life.

Author : Michelle Macdonald, Clinical Nurse Manager Palliative Care, WA Country Health Service

Background

Western Sydney Local Health District (WSLHD) is a large rapidly growing region with a highly diverse population and low average socioeconomic status. Of the 1.1 million population, Hindi speakers (3.5%), are one of the three largest migrant groups. They are of particular interest because, although English is widely spoken (English is an official languages of India), they have cultural beliefs and practices which are often at odds with mainstream health care. 

Aim

This study aimed to understand the culturally specific end-of-life needs of the Hindi speaking communities and how service need to adapt. 

Method

Data was collected from the Hindi community through a focus group with EOL carers (10) a survey of their death literacy (DLI; 60 Hindi speaking respondents), photovoice in-depth interviews with three Hindi carers plus 49 key informant interviews with health services (6 Hindi).

Findings

Like other migrant groups, Hindi speakers had lower DLI than non-migrants. The strongest predictor of DLI was the number of years in Australia (not language used at home) suggesting that it is familiarity with Australian systems and culture that is important. 

The qualitative data revealed:

1. People needed support with grief from the end-of-life diagnosis not just after the patient had died.

2. The differences between Australian and traditional cultural expectations can be challenging e.g., Whether to wear white of black to a funeral. Collective decision-making for the patient, especially for women, conflicts with individual consent. Widows self-depreciating behaviour conflicts with our system of services.

3. However, Hindi beliefs and practices can bring great comfort to the patient and the bereaved e.g., chanting and prayers at the bedside, suitable food, a multitude of visitors, and always keeping the patient company are important. 

Conclusion: These needs can be challenging but the National Palliative Care Strategy 2018 requires end-of-life services to adapt.  

Background: Forty-five percent of the world’s population lives in rural areas. Providing palliative care to people in rural communities continues to be challenging. Identifying key care elements that rural populations with palliative care needs require is critical to improving care outcomes.

Aim: To identify the key care elements that optimise palliative care for people in rural communities.

Design and Data Sources: A systematic review of articles studying the impact of novel rural model of care interventions was undertaken in May 2022. This study was reported using the PRISMA Statement and was registered with Prospero (CRD42020154273). Three databases were systematically searched, with the data generated from the included papers analysed according to Popay’s narrative synthesis, and elements classified according to the WHO Innovative Care for Chronic Conditions (ICCC) Framework.  

Results: Of the 9508 identified papers, 15 met the inclusion criteria, reporting on 14 studies involving 1820 rural patients.  Care received spanned 12/18 of the WHO ICCC Framework elements, with wide variability in how these 12 elements were operationalised.  The five elements that signal improved outcomes were: 1) Promote continuity and coordination; 2) Prepared, informed, and motivated health care teams; 3) Prepared, informed, and motivated patients and families; 4) Organize and equip health care teams; 5) Promote consistent financing. 

Conclusions: A well-coordinated multidisciplinary team approach, led by clinicians with specialist palliative care expertise, integrated across local healthcare settings, using information systems and care planning, is critical to optimising rural palliative care patient outcomes. Rural patients and their families require timely input from specialist palliative care clinicians and information to address their palliative care needs. Rural sites need to be connected with specialist centres, academic institutions and governance structures to maximise a population-based approach to care; conduct funded, robust translational research; and actively inform policy. Further research using more robust designs is required.

Terminally ill individuals should be provided quality palliative care (PC) to enhance their quality of life. LGBTIQ+ people are often exposed to increased stressors throughout their life which may make health service engagement particularly difficult. This study is part of the LGBTIQ+ Health Australia National Palliative Care Project funded by the Department of Health and Aged Care. This paper explores the second phase of this research that sought to investigate what people who are LGBTIQ+ report as barriers and enablers to PC engagement. In the first phase, the same research questions were considered through brief survey responses from a large community sample (n = 837). To provider a deeper and more nuanced understanding of the topic this phase considered the voice of thirteen participants who are LGBTIQ+ across Australia (some of whom were or had worked as health professionals). Semi-structured interviews were conducted with participants and responses were subsequently analysed using thematic analysis. 
 

Barriers and enablers were reported at institutional, relational and individual levels. At an institutional level, barriers concerned religious influences, limited access to services and legal barriers; while increased services, legal protection, and inclusive policies and procedures were perceived as enablers to PC engagement. At a relational level, reported barriers included lack of control over personal relationships, unprofessional or discriminatory staff, however, connection to family, and/or chosen family and/or partner(s) and/or friends, and professional, inclusive and competent staff interactions were perceived as enabling factors. Finally, individual factors that presented as barriers were denial of autonomy and choice, the need to disguise being LGBTIQ+ and unmet HIV/AIDS treatment needs; while maintaining patient autonomy and choice, and the facilitation of various intersectional needs and death needs acted as enablers to PC engagement. The results of this study can be used to inform policy and/or training and practice for health professionals engaging with LGBTIQ+ populations.