End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation

Abstract Background As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required

Appropriateness of intensive care treatments near the end of life during the COVID-19 pandemic

The patient and family perspective on the appropriateness of intensive care unit (ICU) treatments involves preferences, values and social constructs beyond medical criteria. The clinician’s perception of inappropriateness is more reliant on clinical judgment. Earlier consultation with families before ICU admission and patient education on the outcomes of life-sustaining therapies may help reconcile these provider–patient disagreements. However, global emergencies like COVID-19 change the usual paradigm of end-of-life care, as it is a new disease with only scarce predictive information about it. Pandemics can also bring about the burdensome predicament of doctors having to make unwanted choices of rationing access to the ICU when demand for otherwise life-saving resources exceeds supply. Evidence-based prognostic checklists may guide treatment triage but the principles of shared decision-making are unchanged. Yet, they need to be altered with respect to COVID-19, defining likely outcomes and likelihood of benefit for the patient, and clarifying their willingness to take on the risks inherent to being in an ICU for 2 weeks for those eligible. For patients who are admitted during the prodrome of COVID-19 disease, or those who deteriorate in the second week, clinicians have some lead time in hospital to have appropriate discussions about ceilings of treatments offered based on severity

Are We Making Progress on Communication with People Who Are Near the End of Life in the Australian Health System? A Thematic Analysis

Initiating end-of-life (EoL) discussions with patients is often delayed or avoided altogether by healthcare practitioners even in light of imminent death. This continues despite the availability of guidelines and conceptual frameworks on how to communicate prognoses at EoL. We surveyed healthcare practitioners to elicit their exposure to and confidence in EoL discussions and to better understand factors that enable or challenge the initiation of discussions in Australian healthcare settings. Thematic analysis identified that EoL discussions could be emotionally burdensome for healthcare practitioners but were regarded as valuable. Effective communications were challenged by conflict with families and between healthcare practitioners as to appropriate care goal transition, and by prognostic uncertainty. Communication skills appeared to be developed more from experience, and beneficial strategies such as role play and mentoring particularly for younger nurses and doctors were identified. Specific training in EoL communications should target undergraduates and new healthcare practitioners

Frailty in Indigenous populations: A scoping review

Background: Indigenous populations experience high rates of age-related illness when compared to their non-Indigenous counterparts. Frailty is a challenging expression of aging and an important public health priority. The purpose of this review was to map what the existing literature reports around frailty in Indigenous populations and to highlight the current gaps in frailty research within the Indigenous landscape. Method: Scoping review of English language original research articles focusing on frailty within Indigenous adult populations in settler colonial countries (Australia, Canada, New Zealand and USA). Ten electronic databases and eight relevant institutional websites were searched from inception to October 2020. Results: Nine articles met our inclusion criteria, finding this population having a higher prevalence of frailty and frailty occurring at younger ages when compared to their non-Indigenous counterparts, but two did not use a formal frailty tool. Females presented with higher levels of frailty. No culturally specific frailty tool was identified, and the included articles did not assess strategies or interventions to manage or prevent frailty in Indigenous peoples. Conclusions: There was little definitive evidence of the true frailty prevalence, approaches to frailty screening and of potential points of intervention to manage or prevent the onset of frailty. Improvements in the quality of evidence are urgently needed, along with further research to determine the factors contributing to higher rates of frailty within Indigenous populations. Incorporation of Indigenous views of frailty, and instruments and programs that are led and designed by Indigenous communities, are crucial to address this public health priority

How Do Patients with Life-Limiting Illness and Caregivers Want End-Of-Life Prognostic Information Delivered? A Pilot Study

We aimed to identify the level of prognostic disclosure, type of prognostic information and delivery format of prognostic communication that older adults diagnosed with a life-limiting illness or caregivers prefer to receive. We developed and pilot tested an open-ended survey to 15 older patients and caregivers who had experience in health services for life-limiting illness either for a relative, friend or themselves. Five hypothetical clinical scenarios of prognostic options were presented to ascertain preferences. The preferred format to receive prognostic information was verbal delivery by the clinician with a written summary. Photos and videos were less favoured, and a table with numbers/percentages was least preferred. Distress levels to the prognostic scenarios were low, with the exception of a photo. We conclude that older patients/caregivers want end-of-life prognostic information delivered the traditional way, verbally by clinicians. Options to deliver prognostic information may vary across patient groups but empower clinicians in introducing end-of-life discussions with patients/caregivers. Our study illustrates the feasibility of involving terminal patients and caregivers in research that contributes to eliciting prognostic preferences. Further research is needed to understand whether the prognostic preferences of hospitalized patients with life-limiting illness differ

Clinicians’ and public acceptability of universal risk-of-death screening for older people in routine clinical practice in Australia: Cross-sectional surveys

Background Clinicians’ delays to identify risk of death and communicate it to patients nearing the end of life contribute to health-related harm in health services worldwide. This study sought to ascertain doctors, nurses and senior members of the public’s perceptions of the routine use of a screening tool to predict risk of death for older people. Methods Cross-sectional online, face-to-face and postal survey of 360 clinicians and 497 members of the public. Results Most (65.9%) of the members of the public welcomed (and 12.3% were indifferent to) the use of a screening tool as a decision guide to minimise overtreatment and errors from clinician assumptions. Supporters of the use of a prognostic tool were likely to be males with high social capital, chronically ill and who did not have an advance health directive. The majority of clinicians (75.6%) reported they were likely or very likely to use the tool, or might consider using it if convinced of its accuracy. A minority (13.3%) stated they preferred to rely on their clinical judgement and would be unlikely to use it. Differentials in support for tools by seniority were observed, with more support expressed by nurses, interns and registrars than medical specialists (χ2=12.95, p=0.044) and by younger (<40 years) clinicians (81.2% vs. 71.2%, p=0.0058). Discussion The concept of integrating prognostication of death in routine practice was not resisted by either target group. Conclusion Findings indicate that screening for risk of death is seen as potentially useful and suggests the readiness for a culture change. Future research on implementation strategies could be a step in the right direction