Background: General practitioners (GPs) increasingly manage patients with multimorbidity but report challenges in doing so. Patients describe poor experiences with health care systems that treat each of their health conditions separately, resulting in fragmented, uncoordinated care. For GPs to provide the patient-centred, coordinated care patients need and want, research agendas and health system structures and policies will need to adapt to address this epidemiologic transition. This systematic review seeks to understand if and how multimorbidity impacts on the work of GPs, the strategies they employ to manage challenges, and what they believe still needs addressing to ensure quality patient care.Methods: Systematic review and thematic synthesis of qualitative studies reporting GP experiences of managing patients with multimorbidity. The search included nine major databases, grey literature sources, Google and Google Scholar, a hand search ofJournal of Comorbidity, and the reference lists of included studies.Results: Thirty-three studies from fourteen countries were included. Three major challenges were identified: practising without supportive evidence; working within a fragmented health care system whose policies and structures remain organised around single condition care and specialisation; and the clinical uncertainty associated with multimorbidity complexity and general practitioner perceptions of decisional risk. GPs revealed three approaches to mitigating these challenges: prioritising patient-centredness and relational continuity; relying on knowledge of patient preferences and unique circumstances to individualise care; and structuring the consultation to create a sense of time and minimise patient risk.Conclusions: GPs described an ongoing tension between applying single condition guidelines to patients with multimorbidity as security against uncertainty or penalty, and potentially causing patients harm. Above all, they chose to prioritise their long-term relationships for the numerous gains this brought such as mutual trust, deeper insight into a patient’s unique circumstances, and useable knowledge of each individual’s capacity for the work of illness and goals for life. GPs described a need for better multimorbidity management guidance. Perhaps more than this, they require policies and models of practice that provide remunerated time and space for nurturing trustful therapeutic partnerships.

Background: Telehealth technologies are an emerging resource opening up the possibility of greater support if they have utility for patients, carers and clinicians. They may also help to meet health systems’ imperatives for improved service delivery within current budgets. Clinicians’ experiences and attitudes play a key role in the implementation of any innovation in service delivery. Aim: To explore clinicians’ perspectives on and experiences of the utilisation of a pilot telehealth model and its integration into a specialist community palliative care programme. Design: Focus groups and interviews generated data that were analysed through the lens of a realistic evaluation theoretical framework. Setting/participants: The study was conducted in a metropolitan specialist palliative care service in South Australia. Participants (n = 10) were clinicians involved in the delivery of community specialist palliative care and the piloting of a telehealth programme. Results: Service providers consider telehealth resources as a means to augment current service provision in a complementary way rather than as a replacement for face-to-face assessments. Introducing this technology, however, challenged the team to critically explore aspects of current service provision. The introduction of technologies also has the potential to alter the dynamic of relationships between patients and families and community palliative care clinicians. Conclusion: Implementation of a pilot telehealth programme in a specialist palliative community team needs to involve clinical staff in service redesign from the outset. Reliable IT infrastructure and technical support is critical for telehealth models to be effective and will aid uptake.

Telehealth is being used increasingly in providing care to patients in the community setting. Telehealth enhanced service delivery could offer new ways of managing load and care prioritisation for palliative care patients living in the community. The study assesses the feasibility of a telehealth-based model of service provision for community based palliative care patients, carers and clinicians. This study was a prospective cohort study of a telehealth-based intervention for community based patients of a specialist palliative care service living in Southern Adelaide, South Australia. Participants were 43 community living patients enrolled in the Southern Adelaide Palliative Service. To be eligible patients needed to be over 18 years and have an Australian modified Karnofksy Performance Score > 40. Exclusion criteria included a demonstrated inability to manage the hardware or technology (unless living with a carer who could manage the technology) or non-English speaking without a suitable carer/proxy. Participants received video-based conferences between service staff and the patient/carer; virtual case conferences with the patient/carer, service staff and patient’s general practitioner (GP); self-report assessment tools for patient and carer; and remote activity monitoring (ACTRN12613000733774). The average age of patients was 71.6 years (range: 49 to 91 years). All 43 patients managed to enter data using the telehealth system. Self-reported data entered by patients and carers did identify changes in performance status leading to changes in care. Over 4000 alerts were generated. Staff reported that videocalls were similar (22.3%) or better/much better (65.2%) than phone calls and similar (63.1%) or better/much better (27.1%) than face-to-face. Issues with the volume of alerts generated, technical support required and the impact of service change were identified. The trial showed that patients and carers could manage the technology and provide data that would otherwise not have been available to the palliative care service. Australian New Zealand Clinical Trials Registry ACTRN12613000733774 registered on 02/07/2013.

Background: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. Aim: This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists’ perceptions of opportunities and challenges when delivering and developing palliative care services. Design: A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). Results: In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Conclusion: Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.

Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications. Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex. Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included. Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts. Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.

Context People with advanced cancer experience bodily change resulting in debilitating functional decline. Although inability to participate in everyday activities (occupation) contributes to profound suffering, limited research has examined the relationship between altered bodily experience (embodiment) and functional ability. Objectives The purpose of this study was to better understand the lived experience of functional decline for people with advanced cancer living at home. Methods Indepth interviews were conducted with 10 community dwelling people with advanced cancer about their bodily experiences of functional decline. This study employed a pragmatic qualitative approach, informed by hermeneutic phenomenology. Results People described living with rapidly disintegrating bodies and how this affected their ability to participate in everyday activities. Analysis identified themes which were evaluated against conceptual frameworks of ‘occupation’ and ‘embodiment’. People experienced a shifting sense of self. They had to continuously reinterpret changing bodies. Previously automatic movements became disjointed and effortful. Simple actions like standing or getting out of bed required increasing concentration. Relentless bodily breakdown disrupted peoples’ relationship with time, hindering their ability, but not their desire, to participate in everyday activities. Contending with this deterioration is the work of adaptation to functional decline at the end-of-life. Conclusions This study highlights the role active participation in everyday activities plays in mediating adjustment to functional decline. These findings challenge us to look beyond palliation of physical symptoms and psychospiritual care as ends in themselves. Symptom control and palliation should be viewed as mechanisms to optimise active participation in essential and valued activities.