‘Travelling alongside’: Patients’, carers’ and health care professionals’ experiences of the Calvary Health Care Bethlehem model of specialist palliative care

The Menzies Centre for Health Policy was commissioned by Calvary Health Care Bethlehem (CHCB),Caulfield, Melbourne to describe their specialist palliative care service, with emphasis on the experiences of patients, carers and health care professionals (HCPs). CHCB, a service of Little Company of Mary Health Care (LCMHC), is a public, level 3 specialist provider of inpatient and community-based palliative care services for people residing in the Inner South East area of Melbourne, covering five Local Government Areas. The study is a prospective, mixed-method study that describes the CHCB model of specialist palliative care from four perspectives – that of the patient, their nominated carer, nominated health care professional (HCP) and the team at CHCB. This multi-perspective approach is new in the Australian context. The descriptive analysis details a model of specialist palliative care and highlights several key features of the model, which provides flexible, integrated care to maintain and enhance the quality of life of patients and their carers and families. Key features of the CHCB model of specialist palliative care include: • An holistic interdisciplinary team approach to the complex needs of patients and their families. The CHCB model features large interdisciplinary teams based in both the hospital and community settings. The team includes specialist nurses, doctors, pharmacists, physiotherapists, occupational therapists, music therapists, pastoral care workers, dietitians, speech pathologists and social workers. • Rapid pain and symptom management for patients, with 24-hour availability and hospital back up. The model also provides for inpatient respite and end-of–life care in either hospital or community settings. Care is provided as far as possible in accordance with the wishes of the patient and family. • A side-by-side model of active treatment and early palliative care emphasising coordination of care. The CHCB model encourages early involvement of palliative care services in a side-by-side, or supportive, style, so that active treatment can run parallel with support to maintain quality of life in varying stages of illness, for both the patient and family. • Information and advice-giving for patients and carers, with time devoted to tackle the hard conversations about their goals and their future. The experiences of the participants in this study show some scope for improvements that would strengthen the CHCB model of care. Improvements in palliative care for patients and families could be made by: • Strengthening the interdisciplinary team through the inclusion of clinical psychologists and pharmacists on the team; identification of ‘other’ problems, psychosocial and economic; and the provision of early, comprehensive assessments at a specialist palliative care outpatient clinic, and more social work assistance to help patients to access government financial assistance. • Improving the physical facilities at CHCB by redeveloping or rebuilding the hospital that includes a mix of shared and single rooms, which may also make formal respite more acceptable for patients. • Improving both frequency and speed of communication with external HCPs to promote continuity of care; and initiating early, formal advance care planning with patients and their families to inform management plans consistent with patients’ wishes. • Advocating a streamlined application and assessment process to eliminate the need for patients and carers to navigate and complete multiple forms for organisations and services from which they may be eligible to receive support, and facilitate more timely access to government assistance. • Redefining, expanding and marketing palliative care education activities for other HCPs, especially GPs and staff of residential aged care facilities. It will be important to consider these recommendations in the light of the future challenges facing palliative care in Australia (Australian Government Productivity Commission, 2010). Those working in palliative care face major challenges. There is a growing demand for palliative care services that reach beyond those with cancer and the management of early symptoms to other dimensions of care, with intervention well before the terminal stage of illness. The expected demand for palliative care will only be met from available resources if specialist services work more effectively with community-based generalists, including general practitioners and provide support and guidance for primary carers (Mitchell et al., 2010). This study found that the CHCB model of care is well suited to tackle these challenges. It supports early referral; caters for patients with a diagnosis other than cancer; addresses social, psychological and existential needs; and is active in the community, providing a main source of support for carers and of education for other health care professionals. The model also maintains the quality of life and the functional status of its patients, a key outcome for palliative care as defined by the World Health Organization (WHO, 2011)