With an increasing need for palliative care in NZ, from non-malignant conditions and a growing ageing population, Specialist Palliative Care services such as Te Omanga Hospice are striving to work in greater collaboration with Primary care.

In 2014 Te Omanga has introduced a revised model of service delivery, a Model of Integrated Palliative Care (MoIPC) which continues to evolve. With support from the local District Health Board and Primary health organisation (PHO) Te Omanga introduced its most recent iteration of this evolution in May 2019. This was the first phase of a roll out in our community nursing team that will see partnership in the management of individual’s with palliative care needs shift to a more sustainable model.

In 2018 Te Omanga undertook a review of its MoIPC, with respect to the organisation's history and recognizing the changing needs in Specialist Palliative care and Primary Care. We would like to share the work we have done, and are still doing, to build a sustainable integrated model that guarantees improved outcomes for patients and families.

The goal is to present the effects that have been seen to our organisational structure, our vision and values, our community nursing team and our approach to partnering externally in care delivery for our community. This covers our approach and the tools we have adopted to work through this change process and how we have drawn on national and international frameworks, aligning with regional strategies that are embedded in our work.

Introduction
Most Australians prefer to die well and as they wish, but not everyone can have their end-of-life wishes fulfilled. There is a knowledge gap in understanding our communities’ needs in end-of-life care.

To address the gap, we engaged a Community Panel to participate in a deliberative dialogue process to hear their views about end-of-life care.

Short description of practice change implemented
As a Primary Health Network, we recognise that communities have the right to influence decisions that impact their health.

To improve our communities' end-of-life experience, it is important to identify and understand our communities’ needs, their values, beliefs and choices.

Aim and theory of change
The aims and the roles of the Community Panel were to:
• Consider the remit: ‘What does dying well look like and how can we help people achieve this?’; and
• Create a set of meaningful recommendations that can help people to achieve dying well, to be considered for future investment.

Targeted population
Twenty-seven consumers and carers participated in the process. They were identified and recruited from the community/public members living in Melbourne’s north and western regions. They ranged in age, were from diverse backgrounds, and had varied end-of-life experiences.

Timeline
Throughout the engagement process (August 2018−December 2018), the Community Panel were supported by experienced facilitators through a range of activities. They came together for two-and-half days in November and December 2018 to work, discuss and provide recommendations on the remit.

Highlights
Using a Deliberative Democracy Process, it empowered the Panel to participate meaningfully in the following activities:
• a welcome email
• a ‘Meet and Greet’ session
• sharing of information via an online platform
• face to face engagement over two-full weekend days to respond to the remit and develop recommendations; and
• follow-up meeting to present their recommendation and report to the health decision makers.

Despite it being an emotive topic, we successfully demonstrated that open and safe discussions can be achieved using this innovative deliberative process, which gives a greater insight into what it is important to patients and the community. This enables more effective targeting of resource to improve outcomes.

Comments on sustainability
Community involvement through this process will inform more effective and sustainable planning, design and implementation of end-of-life support and services.

Comments on transferability
This will also ensure that our service planning is relevant/applicable and transferrable to meet our future population’s needs. The deliberative process can be applied to other priority areas and programs.

Conclusions
This engagement activity has enhanced our understanding of our local communities’ needs in end-of-life care. The Panel developed a report that provided 14 consensus-driven recommendations on how to support people to die well, and a definition for what dying well entails.

Discussions
The Panel’s recommendations are now being used to guide commissioning intentions and activities for our local communities.

Lessons learned
The process has led to a change of attitudes towards public participation from the community members, and a greater understanding across our organisation of the value of collaborative public participation.

Introduction:
Dementia is a terminal illness, third cause of death among Australians (ABS, 2017) and South Western Sydney (SWS) has one of the highest prevalence in NSW (9,769 people – 2016). This group of people experience barriers to accessing Palliative Care (PC) services and having their end-of-life (EoL) wishes granted. Differently from many conditions, patients with dementia have both their cognitive and decision-making capacity progressively impacted. Therefore, Advance Care Planning (ACP) and engagement with PC services should commence soon after diagnosis.

Short description of practice change implemented:
SWSPHN is developing an integrated, person centred model of EoL planning and PC delivered in the place of residence for people aged 70 years and over with intact decision-making capacity at the time of dementia diagnosis. .

Aim and theory of change:
Improve the EoL journey for people with dementia through early diagnosis and engagement with PC education, planning and choices while the patient’s capacity is intact.

Target population and stakeholders:
Patients diagnosed with dementia, aged 70 years and over with capacity to undertake ACP intact from Campbelltown, Camden, Liverpool, Fairfield. Collateral target groups include the broader community, service providers, and primary and tertiary clinicians.

Timeline:
Diagnostic (Jan-Jul/2018): identify barriers and facilitators during EoL journey for patients with dementia; Solution design (Jul 2018/19): co-design of an integrated pathway with consumers, carers and service providers; Implementation (Jan – Dec/19): capacity building of community and integrated Pathway pilot; Evaluation (Jan-Jul/2020).

Highlights:
-Development of a Dementia specific HealthPathway from pre-diagnosis to PC and EoL
-Raise community and providers awareness of Dementia as a terminal illness
-Improve ACP uptake
-Educate communities on improved social networks to promote emotional, social, physical and spiritual wellbeing for people experiencing dying, grief and bereavement (Compassionate Communities model)

Comments on Sustainability:
Sustainable capacity building of community on how to identify, establish and maintain networks between community and health services to support people during EoL. Conjoined community and health providers sessions for continuous partnerships arrangements. Implementation and training of service providers in the new pathway.

Comments on Transferability:
The activity could be expanded geographically and to include other sub-population groups such as younger people with an Early Onset Dementia diagnosis and people with chronic illnesses.

Conclusions:
Dementia is early diagnosed but not well recognised as a terminal illness by both community and health professionals, impacting in patients EoL journey. Dementia is rarely the principal diagnosis on referrals to PC services, but is frequently a listed comorbidity during hospitalisation.

Discussions:
The development of the model will empower primary and community care providers to support patients to access the right care, in the right place at the right time and reduce unwanted hospitalisations. Through timely diagnosis of Dementia, early engagement with EoL planning and a palliative approach to care, patients, carers and families will benefit from an easier to navigate system and greater preparedness for EoL.

Lessons learned:
Health Providers confidence to instigate and hold ACP discussions is low. Informal partnerships between community and health providers are few impacting on patients journey during EoL.

1. Introduction
Despite growing attention to dignified death and end-of-life care decision making in Korea, little effort has been made to help persons with dementia (PwD) and their family caregivers engage in advance care planning(ACP) or discussions on end-of-life care. This study examined the felt needs for ACP among social workers working with PwDs and their families and the factors that need to be considered in introducing and utilizing ACP in dementia care.

2. Methods
We conducted in-depth interviews with 7 social workers who work at day care centers (n=2), hospitals (n=3), and nursing homes (n=2) in Seoul and its vicinity in South Korea. We asked about participants’ opinion about ACP for PwDs, whether and how they engage in discussions on end-of-life care, obstacles in their efforts to engage in these discussions, suggestions for improving end-of-life care and decision making for PwDs. We conducted content analysis and extracted themes relevant to our research questions.

3. Results
Participants viewed ACP as a useful tool to engage individuals with dementia in decision making before they lose cognitive abilities. However, they pointed out many obstacles in implementing ACP, such as ‘gap between cognitive and physical death,’ ‘difficulty in assessing decision making capacity among inidividuals with dementia,’ ‘death-avoiding culture,’ and ‘people’s reluctance to discuss end-of-life care issues when individuals with dementia have decision-making capacity.’ They suggested that, in order for ACP to be helpful for persons with dementia, various individual, family, cultural, and societal-level factors should be taken into account in its implementation.

4. Discussions, conclusion, lessons learned
Findings suggest that, despite the benefits of ACP, practitioners felt limited in their capacity to engage in discussions on end-of-life care because of the cultural contexts, in which death is a taboo topic and families tend to make important decisions on behalf of older patients. Also, the lack of people’s readiness to discuss end-of-life care issues when patients are physically well-functioning was an obstacle. While changing the death-avoiding culture is important, providing more information about the process of cognitive decline and care options available at each stage can empower PwDs and their families to think about different choices they can make at the end of life.

5. Limitations and suggestions for future research
Our research participants were limited to social workers. In order to better understand the needs of persons with dementia and their families, future research should include these people who are directly affected by dementia. Also, examining the perspectives of other professionals, such as physicians, nurses, and bereavement counsellors would extend the current research findings. Future studies should also look into ways to support and enhance decision-making capacity among individuals with MCI or mild dementia.

Introduction:
A growing need for palliative care in Indonesia is a result of increased life expectancy and the incidence of chronic diseases including cancer. Although palliative care for cancer patients has been sporadically available in Indonesia, continuity of care and the integration of palliative care throughout the cancer trajectory is lacking. The research explored the current scope and status of palliative care in Indonesia and what might be required for the development of effective integrated palliative care in Indonesia.

Methods:
The research methods were underpinned by the interactionist and structural assumptions of pragmatism, symbolic interactionism and structuration theory. The study participants consisted of three groups: adult cancer patients receiving palliative care and their family caregivers; healthcare professionals involved in palliative care; and policymakers in the area of palliative care. Semi-structured interviews and policy documents were the primary data sources. Interviews were conducted with 12 cancer patients, 14 family caregivers, 11 policymakers and 23 healthcare professionals. Data generation was conducted across sites in Jakarta, Indonesia, including hospitals, government departments and homes of patients and carers.

Results:
The analysis process produced two key conceptualisations: owning patients and mobilising local resources. The medical model dominated cancer care and posed barriers to early referral to palliative cancer care and to multidisciplinary teamwork in the provision of cancer and palliative care. Care for patients with cancer was fragmented and largely focused on the treatment of pain and other physical symptoms. Harmonising services reflected an evolving if imperfect, integrated palliative care system built by NGOs and community groups to address obvious gaps in the continuity of care across health care facilities. In the absence of palliative care policies, an emergent informal system used existing health care structures to link services and social media to communicate and coordinate palliative care among various palliative care providers. This ground-level network maximised limited resources for the benefit of palliative cancer patients. While all key stakeholders recognised and appreciated the informal community-based palliative care system, only a small fraction of cancer patients were being supported by this system.

Conclusion:
In the absence of effective Indonesian government policy, an informal model of integrated palliative care has evolved alongside the dominant medical model of palliative care. The work of NGOs and community groups provides a starting point for policy development and application to expand integrated palliative care for cancer patients in this country.

Lesson Learned:
An informal grassroots system of integration of palliative care may be an effective way to start to integrate palliative care in the health care system.




Limitations:
This study was conducted in one area in Indonesia. However, the generated concepts can be used as a basis for palliative care policies development in Indonesia.

Suggestions for Future Research:
Further research on the grassroots processes underpinning NGOs and community-integrated care structures may provide a template for government policy development in this area.