Patient-reported outcome measurement of symptom distress is feasible in most clinical scenarios in palliative care: an observational study involving routinely collected data.

BACKGROUND: Implementation of routinely collected patient-reported outcome measures (PROMs) ensures patients' priorities are at the forefront of care planning and helps to standardize approaches to quality improvement. In palliative care, barriers to PROMs are widely known but what are not understood are the clinical and care settings in which patients are more likely to report and when proxy reporting is needed. OBJECTIVE: To examine the incidence of patient-reported symptom distress compared to the incidence of proxy reporting in palliative care and influencing factors. METHODS: A national observational study using routinely collected PROMs data with influencing factors investigated by logistic regression modelling. Participants were patients with an advanced life-limiting illness receiving palliative care in an inpatient or a community healthcare setting in Australia. RESULTS: Sixteen thousand one hundred and fifty-eight reports of symptom distress were collected from 1117 patients seen by 21 palliative care services. The majority of respondents were diagnosed with cancer (76%), were older (≥65 years, 72%) and had nominated English as their first language (88%). The majority of symptom distress reports were completed by patients (61%). The odds of a patient providing a self-report where grater when they were receiving community versus inpatient palliative care (odds ratio (OR): 3.0; 95% confidence interval (CI): 2.25-4.01), for patients diagnosed with malignant versus non-malignant disease (OR 1.7; 95% CI: 1.26-2.31), and for those who required an urgent change in their care plan versus those whose symptoms and problems were adequately managed (OR: 1.38; 95% CI: 1.04-1.83). CONCLUSION: Three factors are associated with an increased likelihood of patient versus proxy reporting in palliative care: healthcare setting, diagnosis, and the acuity and urgency of the patient's clinical needs. PROMs are feasible in most clinical scenarios in palliative care, including when an urgent clinical response is required.

"You either need help you feel you don't need help or you don't feel worthy of asking for it:" Receptivity to bereavement support.

OBJECTIVE: Although the needs of the bereaved have been identified widely in the literature, how these needs translate into meaningful, appropriate, and client-centered programs needs further exploration. The application of receptivity to support is a critical factor in participation by the bereaved in palliative care bereavement programs. Receptivity is a complex multifactorial phenomenon influenced by internal and external factors that ultimately influences engagement in psychosocial support in bereavement. This study explored factors that influence receptivity to bereavement support from palliative care services in rural, regional, and remote Western Australia. METHOD: The study comprised a qualitative descriptive research design using semistructured interviews with 24 bereaved individuals, nine palliative care health professionals, and four Aboriginal Health Professionals. Participants were recruited via palliative care services in country Western Australia. Interviews were transcribed verbatim and thematically analyzed. RESULT: Findings revealed that a range of individual, social, and geographical factors influence receptivity to bereavement support and can impact on utilization of bereavement support services. SIGNIFICANCE OF RESULTS: Receptivity provides a frame of reference to enhance understanding of factors influencing engagement in psychosocial support in bereavement. Receptivity promotes a shift of service provider perspectives of effective supportive care to consumer-centric reasons for engagement.

"I am tired of having to prove that my husband was dead." Dealing with practical matters in bereavement and the impact on the bereaved.

This paper reports on experiences of dealing with practical matters after death. Semi structured interviews with bereaved individuals were thematically analyzed. Within the theme of coping, dealing with practical matters was a significant stressor and was found to be extremely challenging, time consuming, and to negatively impact on mental and emotional well-being. This study adds new insights on the challenges experienced by the bereaved when attending to practical matters and may help to inform the design of bereavement support, inform standard operating procedures of businesses, and government bereavement leave legislation.

Mapping service standards and guidelines to support accreditation processes – a case study of a collaborative effort worth replicating.

Health services respond to myriad practice standards and guidelines that regulate, monitor, and improve the safety and quality of healthcare. Although important, information overload and compliance fatigue for accreditation can be burdensome for service managers and clinicians. To address this, and ultimately improve the safety and quality of care, this case study demonstrates how a mapping exercise was completed to synthesise seven practice standards and guidelines relevant to palliative care; and develop an online resource to aid accreditation efforts and improve palliative care. A working group, comprised of service managers, clinicians, and academics, mapped a state-wide blueprint to improve palliative care against seven unique practice standards and guidelines, most of which were national in scope. This project culminated with a freely available online resource to translate the standards and guidelines for accreditation - a resource that supports service managers and clinicians across public and private health sectors to readily determine whether and how they demonstrated safety and quality in the context of palliative care and pursue accreditation. By developing one matrix, there is opportunity to alleviate information overload and compliance fatigue for service managers and clinicians. Despite its focus on palliative care, this case study demonstrates how to collaboratively map distinct practice standards and guidelines and form a resource to aid accreditation efforts to improve healthcare.

A systematic literature review exploring the psychosocial aspects of palliative care provision for incarcerated persons: a human rights perspective.

PURPOSE: The purpose of this study is to explore the psychosocial aspects of palliative care provision for incarcerated persons drawing on a human rights perspective. DESIGN/METHODOLOGY/APPROACH: Seven databases were searched to identify empirical studies published from 2010 to 2020. Articles included were qualitative, quantitative, mixed methods, written in English and with westernised health/prison settings, with a key focus on the psychosocial aspects of palliative care provision and human rights. The quality of the articles was appraised using the Mixed Methods Assessment Tool (2018). FINDINGS: The results from 26 articles revealed multiple models of care, with the US prison hospice program depicted as optimal, because of the use of trained incarcerated caregivers, working as aides to the interprofessional team. The bereavement needs of caregivers were highlighted. The barriers to adequate psychosocial care were negative public discourse, prison processes and resources, provider attitudes and the incarcerated person's level of knowledge and trust. Identified facilitators were related to incarcerated persons' caregiving programs, a sense of purpose and visitation leniency. Human rights principles were identified in studies that featured compassionate release and advance care planning. RESEARCH LIMITATIONS/IMPLICATIONS: There is inconsistency in the literature regarding what constitutes psychosocial care, which meant that the authors needed to draw on multiple literature sources to formulate a definition. Additionally, the review only included studies written in English, meaning some high-quality studies could have been missed. The articles that conducted interviews with incarcerated individuals were undertaken in male prisons only and not female prisons. PRACTICAL IMPLICATIONS: Understanding the importance of psychosocial care for incarcerated persons with a life-limiting illness requires a shift in negative public discourse and the need for a stronger human rights focus. Some countries, such as the USA and UK, are achieving effective outcomes; however, countries such as Australia are yet to contribute to this knowledge base. ORIGINALITY/VALUE: If palliative care is a human right, then its philosophy should be considered in its entirety, with the inclusion of psychosocial care.

A Bereavement Common Assessment Framework in Palliative Care: Informing Practice, Transforming Care.

This article describes the development of a bereavement assessment framework for the Western Australia Country Health Service Palliative Care Services bereavement program. The framework is grounded in a clearly articulated evidence base, integrating research from the bereavement field that has informed the development of a standardized assessment framework referred to as the bereavement common assessment framework (B-CAF). The B-CAF identifies the many facets of experiences of the bereaved, creating a holistic and contextual assessment and providing professionals with a tool to enhance assessment and intervention practices. The palliative-curative model of care has also been reconceptualized to recognize that earlier interventions may mitigate adverse outcomes in bereavement. This framework may have implications for further research and service delivery of bereavement support programs.

Looking Through the Lens of Receptivity and Its Role in Bereavement Support: A Review of the Literature.

Receptivity is a new concept within the area of scholarship on bereavement. There is a dearth of research that specifically focuses on individuals' receptivity in relation to bereavement support. This is particularly the case within the context of rural, regional, and remote locations. There is also a noticeable absence in the literature on bereavement support to Aboriginal families. Understanding receptivity in relation to bereavement in rural areas is important, particularly as bereavement support is an important area of service to the community by palliative care services. Receptivity to bereavement services has been identified as a critical factor in participation in bereavement support programs. This review provides a starting point by outlining the present literature on receptivity and bereavement.