Future Model of Care for Community-Based Specialist Palliative Care Services

Deaths in Aotearoa New Zealand (NZ) are projected to increase by almost 50% in the next twenty years. However, there is limited evidence-based guidance on models for community specialist palliative care (SPC) services to meet the increasing demand. In addition, there is the challenge of an aging population, especially those over eighty.   

Palliative care is currently delivered through a primary-specialist model, with thirty-two hospices providing community services, mainly focused on cancer patients. The aging of those dying with chronic conditions, often with extended and unpredictable illness trajectories, does not align well with the traditional model of end-of-life care for cancer patients.

The purpose of this thesis is to propose a future evidence-based model for community-based SPC services in NZ and to generate recommendations for the community SPC sector.

A mixed-methods approach through a critical realist lens was utilised for this research. A convergent synthesis design was used, where both quantitative and qualitative evidence were given equal weight and influence in addressing the research question. The study consists of three parts. Part 1 is a systematic review that employs a mixed-methods synthesis framework to examine both quantitative and qualitative studies, identifying evidence-based models of care. Part 2 includes two studies: Study A is a national cross-sectional hospice survey, providing a snapshot of hospice services. Study B is a qualitative study designed to explore the future preparedness of community specialist services. Part three synthesises the evidence from Parts 1 and 2 to propose a recommended model of care and generate recommendations for the community SPC sector.

The systematic review found a high level of evidence supporting the effectiveness of SPC in improving quality of life and reducing secondary service utilisation. Benefits were found in both face-to-face and home-based care, including episodic and round-the-clock care, for cancer and non-cancer adult populations. The review also identified barriers and enablers of effective care.

The survey found that hospices provide holistic care at home by multidisciplinary teams, predominantly for patients with cancer. Inconsistencies were identified in after-hours care provision and services for Māori and other minority groups. Seven themes and thirty-two sub-themes emerged from the interview study. The themes include: ways of describing a model, challenges facing hospices, the general approach required of the sector, specific solutions in meeting future challenges, palliative care for Māori, equity of care, and rural palliative care.  

The recommended final model incorporates both collaborative and wrap-around models in a manner that can continue to support generalists while providing a safety net for those with complex and end-of-life needs. In addition to the proposed model of care, this research generated fourteen recommendations concerning four key areas: funding, service delivery, engagement with external providers, and advocacy. Of these, two recommendations related to funding should be prioritised for implementation.

The challenge of rising numbers of deaths and the aging population requires the community SPC sector to strengthen the current collaborative model while providing a safety net through a wrap-around model for individuals with complex needs and approaching the end of life.