Abstract
Introduction: Dying well is a complex issue facing humankind. Globally the capacity to deliver community-based specialist palliative care (PC) is challenged by a changing population demographic with increasing healthcare needs and changing healthcare landscapes influenced by public and policy driven expectations. Internationally, and in New Zealand (NZ), palliative and end-of-life care is provided by both specialist and generalist providers. Hospices in NZ, are the sole provider of community-based specialist PC services. Throughout NZ, wide variations in the provision of hospice specialist PC impact directly on access to and equity of service delivery and care. Hospice services must continually re-examine and reshape specialist PC delivery.
Aim: The aim of this integrative review was to identify the critical elements required for an effective and sustainable model of community-based specialist PC service delivery, involving both specialist and generalist providers.
Methods: A comprehensive, systematic integrative literature search was conducted. Literature was limited to papers published in English between 2007 and 2017. The literature search focused on models of specialist PC service delivery provided by health professionals [nursing, medical, allied] in community settings. Countries included in the literature search were the United Kingdom, Ireland, Western Europe, United States of America, Canada, Taiwan, Singapore, Japan, Australia and New Zealand and included a mixture of qualitative, and/or quantitative articles and expert opinion pieces. Data extracted from the literature was analysed using an inductive approach, synthesised findings were categorised based on similarity. Narrative description was used to describe the findings.
Results: A total of 17 articles were included in the review. From the meta synthesis of extracted data, the critical elements of a community-based specialist PC service were identified within three central themes and eight sub themes. Discussed within the eight sub-themes were the challenges, barriers and the opportunities to providing a sustainable model of community-based specialist PC.
Conclusions: An inter-disciplinary team and holistic approach is integral to meet specialist PC need and to populations 'living well' until the end of life and 'dying well'. Early recognition of specialist PC need was recommended for patients with advanced cancer and end stage non-malignant diseases. Models of specialist palliative care are variable in both structure and composition. Community outreach and access to PC provision are challenged by geographical, role and resource barriers. Care coordination provided by a key worker and an inter disciplinary team (IDT) approach to decision making are two critical elements of specialist PC provision which consistently contribute to and improve patient outcomes and quality of life (QOL). Community-based specialist PC must be provided in collaboration and partnership with generalist providers of PC. A shared care or integrated model of specialist and generalist palliative care provision will allow patients' and families to seamlessly navigate within the complex healthcare system and across primary, secondary and tertiary care settings. The sustainability of any patient centred model of specialist and/or generalist PC is dependent on a public health approach, forming strong strategic networks and relationships in the community and building and fostering compassionate communities of care.