End Of Life Care Settings Research Articles

Discourse Analysis in End-of-Life Communication: A Systematic Review

ABSTRACT Discourse analysis (DA) has emerged as a valuable method for examining communication between participants in end-of-life (EOL) care. However, there remains a gap in synthesizing the findings of discourse analytic studies focused on communication within EOL care settings. The aim of this study was to synthesize DA studies in EOL care. A systematic review was conducted following the Preferred Reporting Items for Systematic Review and Meta-Analyses (Prisma) guidelines. An electronic database of Web of Science (WOS), MEDLINE, PubMed, and Embase was performed. 14 peer-reviewed studies published in English before January 10 2024, were included. Thematic analysis identified three overarching themes: (1) caregivers’ discursive stances on EOL care, (2) discursive practices of participants in shared decision-making conversations, and (3) discursive resources in talking illness trajectories. Findings suggest that DA has the potential to provide insights into understanding communication practices in EOL care and examining an individual’s stance on issues about EOL care, thus informing clinical practice and improving patient-centered care.

Social acceptability of psilocybin-assisted therapy for existential distress at the end of life: A population-based survey

Background: Internationally, there is a growing interest in the potential benefits of psilocybin-assisted therapy to treat existential distress at the end of life. However, the social acceptability of this therapy is not yet well known. Aim: This study assesses the social acceptability of the medical use of psilocybin to treat existential distress at the end of life. Design: An online survey was conducted in Canada between November 23 and December 4, 2022. The questionnaire included items pertaining to perceptions, attitudes and concerns towards psilocybin-assisted therapy to treat existential distress at the end of life. Participants: The sample (n = 2800) was stratified by province, age and sex. Participants were adults from four provinces of Canada: Québec, Ontario, Alberta and British Columbia. Results: Overall, 79.3% considered psilocybin-assisted therapy a reasonable medical choice for a patient suffering from existential distress at the end of life, 84.8% agreed that the public health system should cover the costs of the intervention and 63.3% would welcome the legalisation of psilocybin for medical purposes. Previous psilocybin use (p < 0.0001, for all dependent variables), exposure to palliative care (p < 0.05, for all dependent variables) and a progressive political orientation (p < 0.05, for all dependent variables) were associated with more favourable attitudes towards psilocybin-assisted therapy at the end of life. Conclusion: The social acceptability of psilocybin-assisted therapy for existential distress at the end of life is rather high in Canada. These findings may contribute to efforts to mobilise resources and improve access to this emerging therapy in palliative and end of life care settings.

A qualitative exploration of allied health providers’ perspectives on cultural humility in palliative and end-of-life care

BackgroundCultural factors, including religious or cultural beliefs, shape patients’ death and dying experiences, including palliative and end-of-life (EOL) care preferences. Allied health providers must understand their patients’ cultural preferences to support them in palliative and EOL care effectively. Cultural humility is a practice which requires allied health providers to evaluate their own values, biases, and assumptions and be open to learning from others, which may enhance cross-cultural interactions by allowing providers to understand patients’ perceptions of and preferences for their health, illness, and dying. However, there is limited knowledge of how allied health providers apply cultural humility in palliative and EOL care within a Canadian context. Thus, this study describes Canadian allied health providers’ perspectives of cultural humility practice in palliative and EOL care settings, including how they understand the concept and practice of cultural humility, and navigate relationships with patients who are palliative or at EOL and from diverse cultural backgrounds.MethodsIn this qualitative interpretive description study, remote interviews were conducted with allied health providers who currently or recently practiced in a Canadian palliative or EOL care setting. Interviews were audio-recorded, transcribed, and analyzed using interpretive descriptive analysis techniques.ResultsEleven allied health providers from the following disciplines participated: speech-language pathology, occupational therapy, physiotherapy, and dietetics. Three themes were identified: (1) Interpreting and understanding of cultural humility in palliative and EOL care (i.e., recognizing positionality, biases and preconceived notions and learning from patients); (2) Values, conflicts, and ethical uncertainties when practicing cultural humility at EOL between provider and patient and family, and within the team and constraints/biases within the system preventing culturally humble practices; (3) The ‘how to’ of cultural humility in palliative and EOL care (i.e., ethical decision-making in palliative and EOL care, complexities within the care team, and conflicts and challenges due to contextual/system-level factors).ConclusionsAllied health providers used various strategies to manage relationships with patients and practice cultural humility, including intra- and inter-personal strategies, and contextual/health systems enablers. Conflicts and challenges they encountered related to cultural humility practices may be addressed through relational or health system strategies, including professional development and decision-making support.

INDIVIDUALS' KNOWLEDGE ABOUT A LOVED ONE’S END-OF-LIFE CARE WISHES IS ASSOCIATED WITH THEIR OWN ADVANCE CARE PLANNING

Abstract Despite evidence that ACP can improve quality of life for both patient and family, it remains underutilized. Only 37% US adults have a complete advance directive (Kuldeep et al., 2017). Existing studies primarily examined factors associated with patients’ ACP engagement but very few explored ACP among patients’ family. The goal of this study is to examine whether individuals’ knowledge about a loved one’s end-of-life (EOL) care preferences is associated with their ACP engagement. Data are from the US arm of the 2015 Four-Country Survey on Aging and End-of-Life Medical Care. The sample included N=609 adults who experienced the death of a family or close friend in the past 5 years.Three binary dependent variables were measured by different facets of ACP: having a serious conversation about EOL medical care wishes (1) with loved ones, (2) with doctors and (3) documenting those wishes. The primary independent variable was participants’ knowledge about their deceased family’s EOL treatment wishes.Three separate logistic regression models were used. Individuals who had a greater knowledge about their loved one’s EOL treatment wishes were twice as likely to have a conversation with family about their own EOL wishes (OR=2.32, P&amp;lt; 0.001) and documented wishes than those who didn’t(OR=2.03, P&amp;lt; 0.05). Results have direct implications for clinicians who work with families in EOL care settings. They may have opportunities to engage individuals – other than patients – in ACP. Focusing the experience of involvement in a loved one’s EOL care may be an effective strategy to enhance ACP engagement.

Managing symptoms at the end of life: a guide for non-palliative care nurses.

Nurses, regardless of their area of practice, may have to care for a person in their last days and hours of life. However, many nurses outside of specialist palliative and end of life care settings do not feel adequately prepared for this. Nurses can usually obtain advice from specialists working in local hospices or palliative care centres, but they may still find it challenging to act on that advice if it is not underpinned by their own knowledge base. This article provides a guide to assist non-palliative care nurses in recognising dying and managing common symptoms at the end of life.

Preferences for end-of-life care settings among the healthy population in Israel-Related socio-demographic variables.

Preferences for end-of-life (EoL) care settings is of considerable interest for developing public health policy and EoL care strategies. Culture, the cause of illness, and background characteristics may impact preferences. The present study aimed to explore preferences for EoL care settings: homes, hospitals, and inpatient hospice units among the general healthy population in Israel. Possible associations between the setting preferences and socio-demographic characteristics were also examined. A cross-sectional survey was conducted among 311 healthy adults who were recruited through a representative internet panel of the Israeli population using the Israeli census sampling method. The sex ratio was almost 1:1 with 158 women (50.8%) and 153 men (49.2%). All participants completed self-report measures using an online survey system. The questionnaires assessed sociodemographics and preferences for EoL care settings. This survey revealed that 52.1% of the participants expressed preference for being cared for at home rather than in an inpatient hospice unit, 40.8% expressed being cared for at home rather than in a hospital, while 36.7% had no preference regarding being cared for in hospital or in a hospice unit. Among the socio-demographic variables, only age and gender were found to be significantly associated with preferences for EoL care settings. The present study highlights the need to be cautious when regarding home as the preferred EoL care setting, as some individuals declared that they would prefer EoL hospice/hospital care. Age and gender should be considered when discussing and tailoring strategies regarding EoL preferences.

Validation of the Distress Thermometer in patients with advanced cancer receiving specialist palliative care in a hospice setting

Background: Ongoing assessment of psychological reaction to illness in palliative and end of life care settings is recommended, yet validated tools are not routinely used in clinical practice. The Distress Thermometer is a short screening tool developed for use in oncology, to detect individuals who would benefit from further psychological assessment. However the optimal cut-off to detect indicative psychological morbidity in patients with advanced cancer receiving specialist palliative care is unclear. Aim: To provide the first validation of the Distress Thermometer in an advanced cancer population receiving specialist palliative care in a UK hospice setting. Design: Receiver Operating Characteristics analysis was used to compare the sensitivity and specificity of cut-offs indicative of psychological morbidity on the Distress Thermometer in comparison to the Hospital Anxiety and Depression Scale. Setting/Participants: Data were derived from 202 patients with advanced cancer who were approached on admission to inpatient or day hospice care, with 139 patients providing complete data on both measures. Results: The area under the curve was optimal using a Distress Thermometer cut-off score of ⩾6 for total distress and for anxiety, and a cut-off score of ⩾4 optimal when screening for depression. Conclusions: The Distress Thermometer is a valid, accurate screening tool to be used in advanced cancer but with caution in relation to the lack of specificity. With little variation between the area under the curve scores, arguably a Distress Thermometer cut-off score of ⩾5 is most appropriate in screening for all types of psychological morbidity if sensitivity is to be prioritised.

Methodological aspects of economic evaluations conducted in the palliative or end of life care settings: a systematic review protocol

IntroductionIn light of this growing palliative care and end of life care patient population, as well as new (expensive) drugs and treatments, quality research providing evidence for decision-making is required....

Stakeholder Perceptions of Dignity Therapy for Children and Young People with Life-Limiting and Life-Threatening Conditions in the UK

In palliative and end of life care settings supporting people to make sense of their lives is as important as managing disease symptoms. Dignity Therapy is a validated psychotherapeutic intervention designed to bring about a sense of meaning and purpose for individuals at the end of life. Dignity Therapy has primarily been implemented and evaluated in adult palliative care settings. Prior to designing studies that evaluate Dignity Therapy for children and young people with life-limiting and life-threatening conditions, it is essential to establish stakeholders’ perceptions of Dignity Therapy, and whether adaptations would be required for this client group. We aimed to explore the acceptability of Dignity Therapy for children and young people with life-limiting and life-threatening conditions and health professionals, and report findings from our stakeholder activities. Stakeholder consultation activities involved one Death Cafe and two workshops, with over 80 health professionals, hosted at two hospice settings, and a range of social media activities including feedback from five young people with life-limiting and life-threatening conditions via a closed Facebook group and a twitter chat with 22 contributors. Data included field notes, workshop outputs (‘post-it ideas storm’ and ‘diamond ranking’) and social media postings that were analysed using thematic analysis. Across stakeholders, there was overwhelming support for explicit interventions that support the psychosocial and spiritual needs of children and young people with life-limiting conditions. Dignity Therapy could be a supportive intervention to promote open conversations about life, meaning and purpose and dying, between the child or young person, family members and health professionals, but needs adapting to meet their needs. A tool kit of interventions, appropriate to a range of ages and cognitive abilities was suggested, for example a storybook for young children and a digitalised version of dignity therapy for older children/young people. Collaboration with stakeholders is the first stage in developing, or adapting an existing intervention in a different context, a complex intervention. Our stakeholder consultation highlighted that Dignity Therapy has potential to improve the psychosocial and spiritual wellbeing of children and young people with life-limiting and life-threatening conditions, through recalling memories and thinking about the things that are important to them and what they want to be remember for. Research is now needed to develop and test a Dignity Therapy intervention for children and young people with life-liming and life-threatening conditions in the UK.

The Safer Prescription of Opioids Tool (SPOT) — a novel clinical decision support digital health platform for opioid conversion in palliative and end-of-life care: a single centre pilot study

BackgroundOpioid conversion is complex and currently performed manually using tables of approximate equivalence, often in high pressure clinical situations. Apps that offer opioid dose conversion are available but there are concerns about their accuracy, reliability, and clinical validation.AimThe study evaluated a novel opioid dose conversion app, The Safer Prescription of Opioids Tool (SPOT), as a clinician decision support (CDS) platform. The secondary objective was to use SPOT to describe patterns of opioid dose conversion in palliative and end-of-life care.MethodThis prospective clinical utility single-centre pilot study followed a mixed methods design. Prescribers completed an initial survey exploring their current opioid prescribing practice. Thereafter prescribers used SPOT for opioid dosage conversions in parallel to their usual clinical practice. Lastly, prescribers evaluated SPOT through a survey and focus group. SPOT was evaluated using clinical data across primary, secondary and tertiary care in palliative care and end of life care settings at a Scottish Health Board in both out-of-hours and in-hours.ResultsSPOT correctly matched the Gold Standard result in 258 of 268 (96.3%) calculations. Users had a statistically significant increase in confidence in prescribing opioids after using SPOT. A majority (62%) of conversions were for cancer pain. Focus group feedback highlighted perceived benefits in Quality Improvement and Safety when using SPOT.ConclusionSPOT is a safe, reliable and validated CDS that has significant potential to reduce harms from opioid dosing errors, particularly in primary care, including rural primary care, and the out-of-hours setting.

Knowledge of genetics among nurses in end of life care settings

Knowledge of genetics among nurses in end of life care settings

Cognitive behavioural therapy in palliative and end-of-life car

Anxiety and depression are often overlooked symptoms in patients with terminal conditions. There appears to be a link between anxiety and depression and a higher incidence of physical symptoms. Any psychological distress, whatever the cause, requires assessment and treatment. The role of counselling in palliative and end-of-life care (EoLC) is well established. Cognitive behavioural therapy (CBT) is a psychotherapeutic treatment tool that aims to enable individuals to change negative thought processes and behaviour. This article examines whether CBT can be adapted and utilised to reduce patients’ symptoms of low mood, anxiety and pain in the palliative care setting. CBT has the potential to be effective for this patient population, as it focuses on the ‘here and now’. Emerging evidence indicates that palliative care practitioners can be trained effectively to undertake CBT with their patients/clients. Nurses working with patients in palliative and EoLC settings should be familiar with CBT so that they can refer patients who might benefit to a practitioner competent in it use. Conflicts of interest: none

The family caregivers journey in end of life care: Recognizing and identifying with the role of carer

The process of dying in the 21st Century is often protracted. An ageing population and increasing long term conditions have resulted in a need for increased palliative and end of life care. Formal health care services are unable to fully provide the level of support required at the end of life. Increasingly therefore family caregivers are being relied upon to provide often complex interactions and support to people who are dying. More is now understood about the activities they engage in and their potential support needs, however, the carer role is an elusive concept that many carers in palliative and end of life care settings do not recognise or identify with. This has implications for the interactions they may share with health and social care professionals. Drawing on current literature, policy, and a qualitative study of the perceptions of family caregivers in a palliative care setting this paper will seek to consider the role of family caregivers in palliative care settings and to explore the ways in which health and social care practitioners can assist them in undertaking this role.