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

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

Feasibility of using a risk assessment tool to predict hospital transfers or death for older people in Australian residential aged care. A retrospective cohort study.

Residents of Aged Care Facilities (RACF) experience burdensome hospital transfers in the last year of life, which may lead to aggressive and potentially inappropriate hospital treatments. Anticipating these transfers by identifying risk factors could encourage end-of-life discussions that may change decisions to transfer. The aim was to examine the feasibility of identifying an end-of-life risk profile among RACF residents using a predictive tool to better anticipate predictors of hospital transfers, death or poor composite outcome of hospitalisation and/or death after initial assessment. A retrospective cohort study of 373 permanent residents aged 65+ years was conducted using objective clinical factors from records in nine RACFs in metropolitan Sydney, Australia. In total, 26.8% died and 34.3% experienced a composite outcome. Cox proportional hazard regression models confirmed the feasibility of estimating the level of risk for death or a poor composite outcome. Knowing this should provide opportunities to initiate advance care planning in RACFs, facilitating decision making near the end of life. We conclude that the current structure of electronic RACF databases could be enhanced to enable comprehensive assessment of the risk of hospital re-attendance without admission. Automation tools to facilitate the risk score calculation may encourage the adoption of prediction checklists and evaluation of their association with hospital transfers

A stepped-wedge randomised-controlled trial assessing the implementation, impact and costs of a prospective feedback loop to promote appropriate care and treatment for older patients in acute hospitals at the end of life: study protocol

BACKGROUND: Hospitalisation rates for the older population have been increasing with end-of-life care becoming a more medicalised and costly experience. There is evidence that some of these patients received non-beneficial treatment during their final hospitalisation with a third of the non-beneficial treatment duration spent in intensive care units. This study aims to increase appropriate care and treatment decisions and pathways for older patients at the end of life in Australia. This study will implement and evaluate a prospective feedback loop and tailored clinical response intervention at three hospitals in Queensland, Australia.METHODS: A stepped-wedge cluster randomised trial will be conducted with up to 21 clinical teams in three acute hospitals over 70 weeks. The study involves clinical teams providing care to patients aged 75 years or older, who are prospectively identified to be at risk of non-beneficial treatment using two validated tools for detecting death and deterioration risks. The intervention's feedback loop will provide the teams with a summary of these patients' risk profiles as a stimulus for a tailored clinical response in the intervention phase. The Consolidated Framework for Implementation Research will be used to inform the intervention's implementation and process evaluation. The study will determine the impact of the intervention on patient outcomes related to appropriate care and treatment at the end of life in hospitals, as well as the associated healthcare resource use and costs. The primary outcome is the proportion of patients who are admitted to intensive care units. A process evaluation will be carried out to assess the implementation, mechanisms of impact, and contextual barriers and enablers of the intervention.DISCUSSION: This intervention is expected to have a positive impact on the care of older patients near the end of life, specifically to improve clinical decision-making about treatment pathways and what constitutes appropriate care for these patients. These will reduce the incidence of non-beneficial treatment, and improve the efficiency of hospital resources and quality of care. The process evaluation results will be useful to inform subsequent intervention implementation at other hospitals.TRIAL REGISTRATION: Australia New Zealand Clinical Trial Registry (ANZCTR), ACTRN12619000675123p (approved 6 May 2019).</p

Nociceptive interneurons control modular motor pathways to promote escape behavior in Drosophila.

Rapid and efficient escape behaviors in response to noxious sensory stimuli are essential for protection and survival. Yet, how noxious stimuli are transformed to coordinated escape behaviors remains poorly understood. In Drosophila larvae, noxious stimuli trigger sequential body bending and corkscrew-like rolling behavior. We identified a population of interneurons in the nerve cord of Drosophila, termed Down-and-Back (DnB) neurons, that are activated by noxious heat, promote nociceptive behavior, and are required for robust escape responses to noxious stimuli. Electron microscopic circuit reconstruction shows that DnBs are targets of nociceptive and mechanosensory neurons, are directly presynaptic to pre-motor circuits, and link indirectly to Goro rolling command-like neurons. DnB activation promotes activity in Goro neurons, and coincident inactivation of Goro neurons prevents the rolling sequence but leaves intact body bending motor responses. Thus, activity from nociceptors to DnB interneurons coordinates modular elements of nociceptive escape behavior

Nociceptive interneurons control modular motor pathways to promote escape behavior in Drosophila

Rapid and efficient escape behaviors in response to noxious sensory stimuli are essential for protection and survival. Yet, how noxious stimuli are transformed to coordinated escape behaviors remains poorly understood. In Drosophila larvae, noxious stimuli trigger sequential body bending and corkscrew-like rolling behavior. We identified a population of interneurons in the nerve cord of Drosophila, termed Down-and-Back (DnB) neurons, that are activated by noxious heat, promote nociceptive behavior, and are required for robust escape responses to noxious stimuli. Electron microscopic circuit reconstruction shows that DnBs are targets of nociceptive and mechanosensory neurons, are directly presynaptic to pre-motor circuits, and link indirectly to Goro rolling command-like neurons. DnB activation promotes activity in Goro neurons, and coincident inactivation of Goro neurons prevents the rolling sequence but leaves intact body bending motor responses. Thus, activity from nociceptors to DnB interneurons coordinates modular elements of nociceptive escape behavior