Care requirements of patients with advanced cancer within a specialist centre – moving to person-centered approaches

Abstract

Despite the prolonged survival of many patients with advanced cancer and the increasing conceptualization of cancer as a chronic illness, care delivery systems within the Australian context continue to manage advanced cancer as an acute illness. Patients living with advanced cancer are managed alongside those with curable cancers in ambulatory models of care that centre on diagnosis, treatment decision-making or post treatment surveillance. Conversely, the needs of people with advanced disease are often complex, requiring high levels of collaboration between providers across acute, palliative and primary care settings in order to move forwards to a more person-centered approach to care. Aims: This paper addresses three specific aims: 1. to identify the care requirements and concerns of patients and their carers; 2. to examine the role of out-reach telephone calls as a component of care; 3. to identify the nurse's role in care coordination for patients with advanced cancer. Method: Two nurse clinician researchers (CR) managed a cohort of patients with advanced breast (n=12) and gastrointestinal cancers (n=16) over six and nine months respectively. Data were recorded on every interaction between the CRs and the patients, carers and other health professionals. The CRs were interviewed by an independent nurse researcher. Results: The symptoms and issues causing concern to patients and/or carers included pain, weakness, gastrointestinal symptoms, managing appointments and dealing with anxiety. The CR played a major role in coordinating care to address these concerns and found out-reach telephone calls facilitated the process. Conclusions: Patients with advanced cancer have complex needs and care coordination requirements not routinely met in an acute care setting. Input from a nurse working at an advanced level and the use of out-reach telephone calls can assist in meeting these care needs.