Suzanne Rainsford

Delirium in Advanced Cancer: Screening for the Incidence on Admission to an Inpatient Hospice Unit

BACKGROUND Delirium is a common underdiagnosed condition in advanced cancer leading to increased distress, morbidity, and mortality. Screening improves detection but there is no consensus as to the best screening tool to use with patients with advanced cancer. OBJECTIVE To determine the incidence of delirium in patients with advanced cancer within 72 hours of admission to an acute inpatient hospice using clinical judgement and validated screening tools. METHOD One hundred consecutive patients with advanced cancer were invited to be screened for delirium within 72 hours of admission to an acute inpatient hospice unit. Two validated tools were used, the Delirium Rating Scale-Revised 98 (DRS-R-98) and the Confusion Assessment METHOD (CAM) shortened diagnostic algorithm. These results were compared with clinical assessment by review of medical charts. RESULTS Of 100 consecutive admissions 51 participated and of these 22 (43.1%) screened positive for delirium with CAM and/or DRS-R-98 compared to 15 (29.4%) by clinical assessment. Eleven (21.6%) were identified as hypoactive delirium and 5 (9.8%) as subsyndromal delirium. CONCLUSION This study confirms that delirium is a common condition in patients with advanced cancer. While there remains a lack of consensus regarding the choice of delirium screening tool this study supports the CAM as being appropriate. Further research may determine the optimal screening tool for delirium enabling the development of best practice clinical guidelines for routine medical practice.

Place of death in rural palliative care: A systematic review:

Background: There have been many studies on the actual and preferred place of care and death of palliative patients; however, most have been whole population surveys and/or urban focused. Data and preferences for terminally ill rural patients and their unofficial carers have not been systematically described. Aim: To describe the actual place of death and preferred place of care and/or death in rural palliative care settings. Method: A systematic mixed studies review using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Data source: PubMed, PsychINFO, Scopus and CINAHL databases were searched (September to December 2014); eligible quantitative and qualitative studies included preferred and/or actual place of death/care of rural, regional or remote residents; rural data that are clearly identifiable; death due to palliative condition (malignant and non-malignant) or survey of participants with current or hypothetical life-limiting illness. Results: A total of 25 studies described actual place of death; 12 preferred place of care or death (2 studies reported both); most deaths occurred in hospital with home as the preferred place of care/death; however qualitative studies suggest that preferences are not absolute; factors associated with place are not adequately described as rurality was an independent variable; significant heterogeneity (rural setting and participants), however, many areas had a greater chance of home death than in cities; rural data are embedded in population reports rather than from specific rural studies. Conclusion: Home is the preferred place of rural death; however, more work is needed to explore influencing factors, absolute importance of preferences and experience of providing and receiving palliative care in rural hospitals which often function as substitute hospice.

Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review:

Background: End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care. Aims: To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences. Design: A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Data sources: Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors. Results: A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and ‘country’. Conclusion: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers’ experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

Challenges of recruiting hospice inpatients with advanced cancer to research: Reflections on a delirium screening study

Abstract Introduction Delirium research in palliative care, particularly in the dying phase, is possible but is frequently met with ethical and methodological challenges. This paper describes the challenges faced in a previous delirium screening study. Methods Within 72 hours of admission to an acute inpatient specialist palliative care unit, 100 consecutive patients over 18 years of age with advanced cancer were invited to be screened for delirium using validated screening tools. Results Of the 100 consecutive admissions, 49 patients were unable to participate including 7 who did not meet the inclusion criteria and 9 (6 families and 3 patients) who withheld consent. The remaining 33 patients were more unwell and closer to death than those who were recruited. Reasons for non-participation included being too unwell/gate keeping (10), unresponsive (9), died (2) or discharged (3) before recruitment, and exceeding the 72 hour time limit (9). Conclusion Gate keeping and physical condition of patients were the main obstacles to recruitment and is consistent with barriers faced in previous studies involving palliative care and dying patients. While it is possible and necessary to conduct studies in palliative care, including the terminal phase, as reflective practitioners, we must maintain the balance between the demands for evidence-based practice and our compassion and respect for our most vulnerable of patients.

The ‘safe death’: An ethnographic study exploring the perspectives of rural palliative care patients and family caregivers:

Background: In rural settings, relationships between place and self are often stronger than for urban residents, so one may expect that rural people would view dying at home as a major feature of the ‘good death’. Aim: To explore the concept of the ‘good death’ articulated by rural patients with life-limiting illnesses, and their family caregivers. Design: Ethnography, utilising open-ended interviews, observations and field-notes. Participants: In total, 12 rural (town and farm) patients with life-limiting illnesses, 18 family caregivers and 6 clinicians, in the Snowy Monaro region of New South Wales, Australia, participated in this study over the course of the deaths of the patients. Interviews were transcribed and analysed with observational data using an emergent thematic process. Results: A ‘safe death’ was central to a ‘good death’ and was described as a death in which one could maintain (1) a connection with one’s previous identity; (2) autonomy and control over decisions regarding management of end-of-life care and (3) not being overwhelmed by the physical management of the dying process. For all participants, the preferred place of death was the ‘safe place’, regardless of its physical location. Conclusion: Safety, in this study, is related to a familiar place for death. A home death is not essential for and does not ensure a ‘good death’. We all have a responsibility to ensure all places for dying can deliver the ‘safe death’. Future research could explore the inter-relationships between safety and preference for home or home-like places of death.

Personal advance care planning uptake amongst Australian and New Zealand palliative care medical and nursing professionals

Background: Palliative care (PC) medical and nursing professionals are potentially the most death literate group in the community yet little is known about their personal uptake of advance care planning (ACP) or written advance care directives (ACDs). Aim: To describe Australian and New Zealand PC medical and nursing professionals’ participation in personal ACP activities. Method: Between 12 May 2014 and 6 June 2014 an anonymous cross sectional online survey about personal ACP activities was distributed to Australian and New Zealand PC medical and nursing professionals. Results: The survey link was emailed to 946 medical and nursing PC health professionals with 329 (35%) recipients commencing the survey. Ninety-one percent of participating Australian and New Zealand PC medical and nursing health professionals have engaged in some form of ACP; 21% have a written ACD. Over 80% of those without a current ACD have engaged in an ACP conversation with family or significant others. Thirty percent of doctors did not feel an ACD was relevant for them, 29% considered them a low priority, 27% relied on conversations and 14% felt ACDs were poorly designed or ineffective. These proportions were 15%, 44%, 36%, and 2%, respectively for nurses. Conclusion: This study supports the notion that familiarity with ACP increases overall participation however, it does not support the popular view that familiarity with ACDs ensures uptake. The favoured mode of ACP amongst this group of health professionals was a conversation outlining values and preferences with family or significant others.