Enhancing palliative care at home: The role of generalist home care services
An article written by Georgina Johnstone, Leanne Davey, Janeen Cato and Professor Judy Lowthian.
Most Australians want to be cared for and die in their own home. [1,2] To make this a reality, we need to ensure we can provide high-quality palliative and end-of-life care in the community. Home nursing and care organisations are key contributors to the provision of community-based palliative care, with staff supporting palliative clients, their carers and family, monitoring and escalating symptoms and clinical deterioration, and working in partnership with specialist palliative care services when physical and psychosocial symptoms are complex. [3] To achieve this high-quality palliative care, generalist care staff must be adequately trained and supported. However, the literature and our experience tell us that home care nurses often face challenges in meeting the needs of their palliative clients and may not be as confident and knowledgeable about palliative care as they would like. [3-5]
To overcome this, our quality improvement case study recently published in the Australian Journal of Advanced Nursing aimed to promote a general palliative approach as part of standard practice in a home nursing and care organisation. General palliative care is delivered by professionals, like home care nurses, with broad clinical responsibilities who provide primary, ongoing care; and have established relationships with the person and their care community. [6]
Unique in our approach was that the quality improvement activities implemented over a 15-month period encompassing stakeholder engagement, education, and evaluation were managed and supported by a palliative care specialist (nurse practitioner) embedded within the organisation. The role of the nurse practitioner was to drive evidence-based generalist palliative care provision, policy and guidelines; and build staff capacity, providing expert support, consultation and escalation as needed. Through focus groups and an interview with participating nursing care managers and a social worker, we looked to understand the experience, barriers and enablers to providing a general palliative approach in the community.
Findings were synthesised into three overarching themes highlighting 1) the value of tailored education to increase staff knowledge and confidence, 2) the importance of clear communication and mutual respect in successful generalist-specialist partnerships, and 3) the unique nature of the home care setting which is complex, relationship-based and diverse.
Facilitating ongoing education opportunities drawing on local palliative care champions or internal specialists’ expertise can enhance care provision. However, striking the balance between providing care and ongoing education in a geographically diverse and mobile workforce, and how to schedule and resource this is challenging. Work also needs to continue to overcome the stigma and negative connotations around palliative care and death in both the workforce, client-base and broader community.
Nurse care managers believe the value of generalist services, particularly home care services, in the generalist-specialist palliative care partnership, needs to be understood and respected. One of the greatest strengths of generalist home care providers is the trusted, often long-term relationships that care staff develop with clients and carers, which allow for tough discussions to occur alongside requisite clinical care.
Tailored investment in home care to provide a general palliative approach would be beneficial given the unique challenges of this mobile workforce. Palliative care should be recognised as a natural and inevitable part of the care journey for home care providers. Consideration should be given to embedding staff with specialist palliative care training within generalist organisations to drive and champion tailored evidence-based palliative care provision, that is translated into context for all members of the workforce, appropriate to scope.
Future research should examine the effectiveness, long-term impact and sustainability of different methods of providing palliative care education to generalist and mobile home care staff and varying models of generalist-specialist partnerships in meeting client, carer and family needs. By valuing and investing in generalist services, like home nursing care, as a core part of the care team, we can strengthen the provision of person-centred, holistic palliative and end-of-life care, with less undesired hospital admissions and allowing the person to die in their place of choice.
Acknowledgements
This project was funded by the Eastern Melbourne Primary Health Network as part of the Commonwealth Government’s Core Flexible and After-Hours funding, 2019.
Authors
Georgina Johnstone
Research Officer
Bolton Clarke Research Institute
Leanne Davey
Nurse Practitioner – Palliative Care
Bolton Clarke
Janeen Cato
Manager Clinical Innovation
Bolton Clarke
Professor Judy Lowthian
Head of Research and Principal Research Fellow
Bolton Clarke Research Institute
References
- Swerissen H, Duckett S. Dying well [Internet]. Melbourne, Vic: Grattan Institute; 2014 [cited 2023 Aug 16].
- Royal Commission into Aged Care Quality and Safety. Final report: Care, dignity and respect. Volume 1 summary and recommendations (4.06MB pdf). The Commission; 2021.
- Wu YH, Hsieh HY, Kuo YL, Wu CY. The experiences and needs of nurses providing home-based palliative care: A qualitative meta-synthesis. J Palliat Care. 2022 May 31:8258597221105167.
- Midlöv EM, Lindberg T. District nurses’ experiences of providing palliative care in the home: An interview study. Nord J Nurs Res. 2020;40(1):15-24.
- Weston EJ, Jefferies D, Stulz V, Glew P, McDermid F. A global exploration of palliative community care literature: An integrative review. J Clin Nurs. 2023;10.1111/jocn.16707.
- Palliative Care Australia (PCA). Palliative care service development guidelines (331kb pdf). Canberra, ACT: PCA; 2018 [cited 2023 Aug 16].