Highlights • We synthesise evidence for interventions targeting end-of-life communication. • Studies targeted patients, carers, health professionals or multiple stakeholders. • Interventions had ...variable learning/behavior targets, structure, content and length Study designs, outcomes, settings, measures and quality were diverse. • Most evidence is derived from less robust studies, more robust RCTs are needed.
Aims and objectives
To investigate the facilitators, barriers and strategies that Australian palliative care nurses identify in providing existential and spiritual care for patients with ...life‐limiting illnesses.
Background
Palliative care aims to be holistic, incorporating all domains of personhood, but spiritual/existential domain issues are often undertreated. Lack of time and skills and concerns for what you may uncover hamper care provision.
Design
A qualitative study through semistructured interviews.
Methods
We interviewed 20 palliative care nurses from a cross section of area of work, place of work, years of experience, spiritual beliefs and importance of those beliefs within their lives. Questions focused on their current practices of existential and spiritual care, identification of facilitators of, barriers to and strategies for provision of that care. Their responses were transcribed and subjected to thematic analysis.
Results
The nurses' interviews yielded several themes including development of the nurse–patient relationship (14/20 nurses), good communication skills and examples of questions they use to ‘create openings’ to facilitate care. Barriers were identified as follows: lack of time (11/20 nurses), skills, privacy and fear of what you may uncover, unresolved symptoms and differences in culture or belief. Novel to our study, the nurses offered strategies that included the following: undertaking further education in this area, being self‐aware and ensuring the setting is conducive to in‐depth conversations and interactions and documentation and/or interdisciplinary sharing for continuity of care.
Conclusion
Palliative care nurses are well placed to provide existential and spiritual care to patients with the primary facilitator being the nurse–patient relationship, the primary barrier being lack of time and the primary strategy being undertaking further education in this area.
Relevance to clinical practice
These findings could be used for nurse‐support programmes, undergraduate or graduate studies or communication workshop for nurses.
Economic evaluations of advance care planning (ACP) in people with chronic kidney disease are scarce. However, past studies suggest ACP may reduce healthcare costs in other settings. We aimed to ...examine hospital costs and outcomes of a nurse-led ACP intervention compared with usual care in the last 12 months of life for older people with end-stage kidney disease managed with haemodialysis.
We simulated the natural history of decedents on dialysis, using hospital data, and modelled the effect of nurse-led ACP on end-of-life care. Outcomes were assessed in terms of patients' end-of-life treatment preferences being met or not, and costs included all hospital-based care. Model inputs were obtained from a prospective ACP cohort study among dialysis patients; renal registries and the published literature. Cost-effectiveness of ACP was assessed by calculating an incremental cost-effectiveness ratio (ICER), expressed in dollars per additional case of end-of-life preferences being met. Robustness of model results was tested through sensitivity analyses.
The mean cost of ACP was AUD$519 per patient. The mean hospital costs of care in last 12 months of life were $100,579 for those who received ACP versus $87,282 for those who did not. The proportion of patients in the model who received end-of-life care according to their preferences was higher in the ACP group compared with usual care (68% vs. 24%). The incremental cost per additional case of end-of-life preferences being met was $28,421. The greatest influence on the cost-effectiveness of ACP was the probability of dying in hospital following dialysis withdrawal, and costs of acute care.
Our model suggests nurse-led ACP leads to receipt of patient preferences for end-of-life care, but at an increased cost.
Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease ...and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP.
Qualitative study.
Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP (“not commenced,” “in progress,” or “completed”) from 3 renal services.
Semistructured interviews.
Transcripts were analyzed using thematic analysis.
5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers’ capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest).
Only English-speaking patients/caregivers participated in the interview.
ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient’s illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions.
ObjectivesIt is important that the outcomes of advance care planning (ACP) conversations are documented and available at the point of care. Advance care directives (ACDs) are a subset of ACP ...documentation and refer to structured documents that are completed and signed by competent adults. Other ACP documentation includes informal documentation by the person or on behalf of the person by someone else (eg, clinician, family). The primary objectives were to describe the prevalence and correlates of ACDs among Australians aged 65 and over accessing health and residential aged care services. The secondary aim was to describe the prevalence of other ACP documentation.Design and settingA prospective multicentre health record audit in general practices (n=13), hospitals (n=12) and residential aged care facilities (RACFs; n=26).Participants503 people attending general practice, 574 people admitted to hospitals and 1208 people in RACFs.Primary and secondary outcome measuresPrevalence of one or more ACDs; prevalence of other ACP documentation.Results29.8% of people had at least one ACD on file. The majority were non-statutory documents (20.9%). ACD prevalence was significantly higher in RACFs (47.7%) than hospitals (15.7%) and general practices (3.2%) (p<0.001), and varied across jurisdictions. Multivariate logistic regression showed that the odds of having an ACD were positively associated with greater functional impairment and being in an RACF or hospital compared with general practice. 21.6% of people had other ACP documentation.ConclusionsIn this study, 30% of people had ACDs accessible and a further 20% had other ACP documentation, suggesting that approximately half of participants had some form of ACP. Correlates of ACD completion were greater impairment and being in an RACF or hospital. Greater efforts to promote and standardise ACDs across jurisdictions may help to assist older people to navigate and complete ACDs and to receive care consistent with their preferences.Trial registration numberACTRN12617000743369.
Psychologists remain underrepresented in end-of-life care, and there is limited understanding of their role among healthcare professionals, patients, and caregivers. This systematic mixed-studies ...review, prospectively registered on PROSPERO (CRD42020215775), explored the role of psychologists, and the facilitators and barriers they experience, in supporting clients with illness-related dying and death. A search of six research databases was conducted in October 2023. Fifty-one studies, mainly qualitative and from the perspectives of psychologists, met inclusion criteria. Thematic synthesis highlighted how psychologists provided expertise across various contexts. They supported clients with preparing for death, and adjusting to dying, provided professional consultancy and support, and undertook leadership in enhancing psychological end-of-life care. Results illustrated the sustaining factors and ongoing challenges working in end-of-life care, namely, the unique nature of navigating the death space, recognition and awareness of psychologists' contribution, and the support, training and development required. Given the universality of dying and death, this review is relevant to psychologists working within and beyond more traditional end-of-life care contexts, such as employee assistance programs, private practice, schools, and other psychological services. Policy, clinical and research implications are discussed, including the need for greater engagement and training of psychologists in the dying and death space.
•Psychologists' role in palliative care is not well established nor well defined. This review establishes clarity on their role and scope of work.•Psychologists have a unique role in providing specialist assessment and intervention for more complex psychological problems.•Results illustrate the importance of greater advocacy, training and education, and the engagement of psychologists in the dying and death space.•Given the universality of dying and death, results are relevant to all psychologists.•Competence in working with dying and death should be a core skill and integrated in psychology training curricula.
Hypoglycemia in type 1 diabetes associates with changes in the pancreatic islet α cells, where the receptor for advanced glycation end products (RAGE) is highly expressed. This study compared islet ...RAGE expression in donors without diabetes, those at risk of, and those with type 1 diabetes. Laser-dissected islets were subject to RNA bioinformatics and adjacent pancreatic tissue were assessed by confocal microscopy. We found that islets from type 1 diabetes donors had differential expression of the RAGE gene (AGER) and its correlated genes, based on glucagon expression. Random forest machine learning revealed that AGER was the most important predictor for islet glucagon levels. Conversely, a generalized linear model identified that glucagon expression could be predicted by expression of RAGE signaling molecules, its ligands and enzymes that create or clear RAGE ligands. Confocal imaging co-localized RAGE, its ligands and signaling molecules to the α cells. Half of the type 1 diabetes cohort comprised of adolescents and a patient with history of hypoglycemia-all showed an inverse relationship between glucagon and RAGE. These data confirm an association between glucagon and islet RAGE, its ligands and signaling pathways in type 1 diabetes, which warrants functional investigation into a role for RAGE in hypoglycemia.
Abstract Context There is increasing interest in providing nonpharmacological treatments, including therapeutic life review interventions, to enhance palliative care patients' existential/spiritual ...domains. Objectives To review quantitative evaluations of therapeutic life review interventions to assist palliative care patients with prognoses of 6 months or fewer in addressing existential and spiritual domains. Methods Comprehensive searches of PubMed, Medline, Web of Science, CINAHL, Scopus, and PsycINFO were undertaken using a validated palliative care search filter in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. Each publication that met the inclusion criteria was read and classified according to the American Heart Association's Disease Management Taxonomy, Consolidated Standards of Reporting Trials, QualSyst, and the Task Force on Psychological Interventions. Intervention procedures and outcomes were described. Results The searches yielded 1768 articles, of which 14 met the inclusion criteria. The articles reported six interventions evaluated once and four interventions evaluated twice, resulting in 10 distinct interventions. The interventions were evaluated in randomized controlled trials ( n = 9), single-arm studies ( n = 3), and a cohort study ( n = 1). Interventions were conducted in one to eight 15–160 minute sessions by psychologists, social workers, and nurses. Attrition rates were 12%–50% because of patient death and deterioration. Participants lived 28–110 days after completion. Significant results were reported in 11 of 14 studies. Conclusion There are few studies evaluating therapeutic life review interventions, although results are promising. Further studies are required that use stricter selection criteria to demonstrate efficacy before these interventions are adopted into clinical practice. Further study may include the effect of these interventions on the interventionist and the bereaved family and caregivers in long-term follow-up.
Background Recent clinical practice guidelines have highlighted the importance of advance care planning (ACP) for improving end-of-life care for people with chronic kidney disease (CKD). Study Design ...We conducted a systematic integrative review of the literature to inform future ACP practice and research in CKD, searching electronic databases in April 2013. Synthesis used narrative methods. Setting & Population We focused on adults with a primary diagnosis of CKD in any setting. Selection Criteria for Studies We included studies of any design, quantitative or qualitative. Interventions ACP was defined as any formal means taken to ensure that health professionals and family members are aware of patients’ wishes for care in the event they become too unwell to speak for themselves. Outcomes Measures of all kinds were considered of interest. Results 55 articles met criteria reporting on 51 discrete samples. All patient samples included people with CKD stage 5; 2 also included patients with stage 4. Seven interventions were tested; all were narrowly focused and none was evaluated by comparing wishes for end-of-life care with care received. One intervention demonstrated effects on patient and family outcomes in the form of improved well-being and anxiety following sessions with a peer mentor. Insights from qualitative studies that have not been used to inform interventions include the importance of instilling patient confidence that their advance directives will be enacted and discussing decisions about (dis)continuing dialysis therapy separately from “aggressive” life-sustaining treatments (eg, ventilation). Limitations Although quantitative and qualitative findings were integrated according to best practice, methods for this are in their infancy. Conclusions Research on ACP in patients with CKD is limited, especially intervention studies. Interventions in CKD should attend to barriers and facilitators at the levels of patient, caregiver, health professional, and system. Intervention studies should measure impact on compliance with patient wishes for end-of-life care.
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