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Palliative care is expanding in Africa as the continent faces a rising disease burden. As the specialty takes form, it is important to acknowledge the cultural mores regarding health and disease. Many Africans perceive health as more than the individual's physical body, instead include the spirituality and well-being of family, community and ancestors. Much of living is done with the goal of becoming an ancestor, which is tied to the individual's burial and ceremonies. Despite their importance, conversations about death are often thought to be culturally taboo. This poses a challenge to palliative care which is based on the individual preferences and priorities, usually identified through shared decision-making. Little is known about the end-of-life priorities and preferences in Africa, leading to the research question: What are the end-of-life preferences and priorities for community dwelling adults in Mozambique? This paper examines instruments that can be used to measure end-of-life preferences. [ABSTRACT FROM AUTHOR]

Background: World population is not only aging but suffering from serious chronic illnesses, requiring an increasing need for end-of-life care. However, studies show that many healthcare providers involved in the care of dying patients sometimes express challenges in knowing when to stop non-beneficial investigations and futile treatments that tend to prolong undue suffering for the dying person. Objective: To evaluate the clinical signs and symptoms that show end-of-life is imminent in individuals with advanced illness. Design: Narrative review. Methods: Computerized databases, including PubMed, Embase, Medline,CINAHL, PsycInfo, and Google Scholar were searched from 1992 to 2022 for relevant original papers written in or translated into English language that investigated clinical signs and symptoms of imminent death in individuals with advanced illness. Results: 185 articles identified were carefully reviewed and only those that met the inclusion criteria were included for review. Conclusion: While it is often difficult to predict the timing of death, the ability of healthcare providers to recognize the clinical signs and symptoms of imminent death in terminally-ill individuals may lead to earlier anticipation of care needs and better planning to provide care that is tailored to individual's needs, and ultimately results in better end-of-life care, as well as a better bereavement adjustment experience for the families. [ABSTRACT FROM AUTHOR]

Objectives: Individuals dependent on long-term mechanical ventilation (LTMV) for their day-to-day living are a heterogenous population who go through several transitions over their lifetime. This paper describes three transitions: 1) institution/hospital to community/home, 2) pediatric to adult care, and 3) active treatment to end-of-life for ventilatorassisted individuals (VAIs). Methods: A narrative review based on literature and the author's collective practical and research experience. Four online databases were searched for relevant articles. A manual search for additional articles was completed and the results are summarized. Results: Transitions from hospital to home, pediatric to adult care, and to end-of-life for VAIs are complex and challenging processes. Although there are several LTMV clinical practice guidelines highlighting key components for successful transition, there still exists gaps and inconsistencies in care. Most of the literature and experiences reported to date have been in developed countries or geographic areas with funded healthcare systems. Conclusions: For successful transitions, the VAIs and their support network must be front-and-center. There should be a coordinated, systematic, and holistic plan (including a multi-disciplinary team), life-time follow-up, with bespoke consideration of jurisdiction and individual circumstances. [ABSTRACT FROM AUTHOR]

In response to a global population with increasingly complex issues at the end of life, a movement in the U.S. has emerged incorporating doulas into end-of-life care. These end-of-life (EOL) doulas are not just focused on the quality of life, but also the quality of death. Like birth doulas, who provide support for pregnant patients and their families, EOL doulas help alleviate physical and mental discomfort in those who are dying. In this paper, we explore the role of EOL doulas in improving the care of unrepresented patients, who lack decision-making capacity and have no surrogates or documents to guide their healthcare decisions. We argue that EOL doulas may help this traditionally underserved population experience a "good death" by answering several ethical and procedural challenges. As quasi-independent, non-medical members of the healthcare team, they provide a balancing, advocating voice on behalf of the patient, and may also help reduce inappropriate treatment, delays in care, and the overburdening of the public guardianship system. As such, attention should be given to formally defining their place within the healthcare infrastructure. Ultimately, we contend that EOL doulas are key to ensuring optimal, ethical care for unrepresented patient populations. [ABSTRACT FROM AUTHOR]

Objectives: Individuals dependent on long-term mechanical ventilation (LTMV) for their day-to-day living are a heterogenous population who go through several transitions over their lifetime. This paper describes three transitions: 1) institution/hospital to community/home, 2) pediatric to adult care, and 3) active treatment to end-of-life for ventilator-assisted individuals (VAIs). Methods: A narrative review based on literature and the author's collective practical and research experience. Four online databases were searched for relevant articles. A manual search for additional articles was completed and the results are summarized. Results: Transitions from hospital to home, pediatric to adult care, and to end-of-life for VAIs are complex and challenging processes. Although there are several LTMV clinical practice guidelines highlighting key components for successful transition, there still exists gaps and inconsistencies in care. Most of the literature and experiences reported to date have been in developed countries or geographic areas with funded healthcare systems. Conclusions: For successful transitions, the VAIs and their support network must be front-and-center. There should be a coordinated, systematic, and holistic plan (including a multi-disciplinary team), life-time follow-up, with bespoke consideration of jurisdiction and individual circumstances. [ABSTRACT FROM AUTHOR]

The purpose of the present review was to compile and analyze all interventions aimed at improving the sleep–rest pattern of adult caregivers. A database search was performed in PubMed, Embase, Scopus, CINAHL and PsycINFO. Twenty-four papers published between 1998 and 2020 met the inclusion criteria. Informal caregivers can benefit from various types of sleep interventions, including (a) cognitive-behavioral sleep interventions (CBIs), (b) caregiver health interventions (CHIs), and (c) exercise programs. Other types of interventions such as acupressure, back massage, reflexology, music, and heart rate variability biofeedback sessions may have beneficial effects on the sleep of caregivers. Yet, studies on this topic are heterogeneous and often have considerable methodological shortcomings. Few clinical trials have explored sleep problems as a dyadic caregiver–patient relationship. It is necessary to conduct new clinical trials to determine the viability and level of evidence of the various strategies aimed at improving sleep of informal caregivers. [ABSTRACT FROM AUTHOR]

Introduction: A palliative care approach can improve quality-of-life for people with dementia. It is the preference of many people with dementia to remain living at home until death, with the appropriate care. To develop a successful model for dementia palliative care in the community, it is essential to assimilate the perspectives and experiences of those affected. The guiding research question for this study was: What are people with dementia and family carers' views on a model for dementia palliative care?. Methods: Focus groups (n = 3) were conducted with bereaved or current family carers (n = 11), and people with dementia (n = 2). Discussions centred around a proposed model of dementia palliative care. These were transcribed and analysed using thematic analysis. Results: Three main themes were identified: living and dying well with dementia; reducing carer burden to fulfil the wish for home care; and lack of faith in the healthcare system. One statement which summarised the analysis was: "Dementia palliative care is a dream, but not a reality." This reflected participants' repeated "wish" for this "ideal" model of care, but simultaneous scepticism regarding its implementation, based on their prior experiences of healthcare services. Conclusion: All participants were welcoming of the proposed model for dementia palliative care and were generally positive about palliative care as a concept relating to dementia. There was consensus that the model would allow people to live and die well with dementia, and reducing the carer burden would fulfil the wish to remain at home. However systemic changes in the healthcare system will be needed to facilitate a truly person-centred, holistic, individualised and flexible model of care. [ABSTRACT FROM AUTHOR]

Background: Navigating medical care at the end of life can be a challenging experience for patients. There are also significant resource burdens, including intensive care unit (ICU) admissions, accompanying terminal illness. For actively dying patients, developing a care plan based on patient goals and delivering care at the bedside can enhance patient well-being, avoid inappropriate transfers or interventions, and improve resource management. Methods: The Rapid Response Team (RRT) is an around the clock intensivist service that responds to all acutely decompensating patients in our hospital. Through the Appropriate Care Escalation (ACE) program, the RRT intensivist identifies amongst decompensating patients, terminally ill individuals for whom prognosis is extremely poor irrespective of available interventions. These patients receive discussions about goals of care, code status, and management options. They receive care on a dedicated stepdown unit without escalation to the ICU. If aligned with patient goals, care plans incorporate critical care interventions including ventilator and vasopressor therapy. Results: Over 5 years, RRT identified 413 terminally ill patients under the ACE program to continue end of life care on the stepdown unit. Following discussions of goals, 60.8% of patients requested DNR/DNI, 30.9% were full code, and 8.5% requested DNR/OK-TO-INTUBATE status. At discharge, 82.1% of ACE patients expired compared to 23% of all RRT consultations. Patients received 233 critical care procedures at bedside including intubations, central access catheters and bronchoscopy. Conclusion: The ACE program helped identify, in real time, actively dying, terminally ill patients, establish patient goals, and expand critical care services outside the ICU. [ABSTRACT FROM AUTHOR]

End-of-life (EOL) conversations with relatives or significant others are often avoided. One reason can be negative expectations regarding these conversations. The present study was conducted to develop and initially validate the End-of-Life Conversations – Expectations Scale (EOLC-E). An exploratory factor analysis (N = 307) resulted in a 20-item version with three distinct dimensions: expected own emotional burden (α =.92), expected other person's emotional burden (α =.94) and communication self-efficacy (α =.89). The EOLC-E total score correlated significantly with communication apprehension about death (r =.62), fear of death (r =.58), death avoidance (r =.52) as well as readiness for end-of-life conversations (r = −.38) and occurrence of previous conversations (r = −.29). Results suggest that the EOLC-E is a reliable and valid instrument to assess death and dying communication expectations. This measure has utility in communication research focusing on optimizing expectations and increasing EOL communication. [ABSTRACT FROM AUTHOR]

This review article examines the recent (i.e., since the late-1990s) research on deathbed visions (DBVs). The reviewed material includes the features of DBV experiences, terminology and definitional issues in the literature, and prevalence reports of DBVs by family members/caregivers of dying persons, healthcare professionals, terminally ill patients, hospice palliative care volunteers, and nursing home staff. The impact of DBVs on dying persons, why deathbed visitors appear, and possible explanations for DBVs are also considered. The lessons learned from the literature review include the following: DBVs are common experiences that cannot be easily explained, and they typically have positive impacts on dying persons, not the least of which is lessening the fear of death. The literature review also highlights the need for training and education about DBVs. [ABSTRACT FROM AUTHOR]

Background: Patients with serious illness frequently report (temporary) wishes to hasten death. Even until the end-of-life, many patients also harbor a will to live. Although both phenomena are negatively correlated according to some studies, they can also co-exist. Knowledge about the complex relationship between the seemingly opposing wish to hasten death and will to live is limited, but crucial for delivering adequate care and understanding potential requests for assisted dying. Aim: To study the correlation of and explore the relationship between wish to hasten death and will to live over 6 weeks. Design: Observatory, prospective cohort study following a mixed methods design. Analysis of quantitative (Schedules of Attitudes Toward Hastened Death, a visual numerical scale and (additional) validated questionnaires) and qualitative (semi-structured interviews) data with illustrative case descriptions. Setting/participants: Patients receiving palliative care with heterogenous underlying diseases from various care settings, before and after an open conversation on a possible desire to die. Results: In n = 85 patients, wish to hasten death and will to live were strongly negatively correlated at three time points (baseline: r (65) = −0.647, p ⩽ 0.001; after 1 week: r (55) = −0.457, p ⩽ 0.001 and after 4–6 weeks: r (43) = −0.727, p ⩽ 0.001). However, visual assessment of scatterplots revealed a small, but substantial number of outliers. When focusing on these outlier patients, they showed clinically relevant changes between baseline and 6 weeks with the wish to hasten death changing in n = 9 (15% of n = 60) and the will to live changing in n = 11 (18.6% of n = 59). Interview data of three outlier cases illustrates unusual trajectories and possible factors which may influence them. Conclusions: As they can co-exist in different possible combinations, a high wish to hasten death does not necessarily imply a low will to live and vice versa. Patients receiving palliative care can hold such seemingly opposing positions in mind as a form of coping when confronted with an existential threat of serious illness. Therefore, health professionals are encouraged to proactively engage patients in conversation about both phenomena. [ABSTRACT FROM AUTHOR]

Background: As the number of people ageing in prison with complex healthcare needs continues to increase, so does the need for palliative care in the restrictive prison context. Palliative care for people in prison is facilitated by correctional officers, and prison- and hospital-based clinicians. A collective analysis of existing research to identify common experiences of these stakeholders globally has not been completed. Aim: To explore the perceptions and experiences of correctional officers and prison- and hospital-based clinicians who facilitate palliative care for people in prison. Design: A systematic review and meta-synthesis. Data sources: Keywords and subject headings related to palliative care and prisons were used to search seven databases with no time limitations. Peer-reviewed research in English, containing qualitative data from stakeholders facilitating palliative care for people in prison were included, and appraised using the CASP tool. Results: Two analytical themes emerged: (i) a prison lens on a palliative approach and (ii) coping complexities. Palliative care is 'translated' into the prison setting according to security and environmental constraints. Stakeholders experienced ethical, personal and professional difficulties, because prison-based palliative care did not align with community norms. Ambiguous policy and expectations regarding prioritising care needs and balancing custodial rules led to role stress. Conclusions: Providing palliative care for people in prison is complex and impacts stakeholders and people in prison with palliative care needs. Supporting person-centred care through a multi-service approach, stakeholder education and standards will improve the quality and accessibility of care. [ABSTRACT FROM AUTHOR]

Background: Most employees will experience serious illness, caregiving, dying and loss (End-of-Life (EoL) experiences) at multiple points throughout their working lives. These experiences impact affected employees but also their colleagues in terms of health and wellbeing, and the workplace as a whole in terms of workplace safety, productivity and labour relations. The impact of EoL experiences on employees means that workplaces are called to play a more active role in providing support for EoL experiences. Aim: To describe how the EU-CoWork (2024–2028) project addresses its main aims to (1) create Compassionate Workplace cultures, practices and policies and improve health and wellbeing for employees dealing with EoL experiences in different national work contexts in Europe; (2) describe and evaluate the process of co-creation and implementation of Compassionate Workplace Programs (CWPs) and how these influence the programs' outcomes. Design: EU-CoWork employs a facilitated and co-creative Developmental Evaluation approach to the development of 12 tailored CWPs across four European countries (Belgium, Austria, Sweden and Greece). Methods: To evaluate the outcomes and processes leading to these outcomes, a mixed-methods Realist Evaluation methodology is applied, formulating and testing Context-Mechanism-Outcomes configurations and combining longitudinal quantitative and qualitative data collections. Results: EU-CoWork will generate evidence to support an expanded model of occupational health and safety risk factors sensitive to the specific challenges related to employees' EoL experiences. In doing so, several challenges will have to be navigated: involving employees with EoL experiences while avoiding overburdening them, avoiding tokenistic engagement, managing power differentials, balancing the need for scientific rigour with the flexibility required in co-creation, reconciling different epistemologies and disciplinary traditions and organisational resistance to change. Conclusion: There are potential long-lasting broader societal impacts through the stimulation of open discourse on EoL topics, the reconciliation of work and care, and changes in gendered work and care patterns. [ABSTRACT FROM AUTHOR]

Aim: To review the latest qualitative literature on how the physical hospital environment affects palliative patients and their families. Background: People with a life-limiting illness may receive palliative care to improve their quality of life in hospital and may have multiple admissions as their illness progresses. Yet, despite a preference for a death at home, more than half of the dying population will receive end-of-life care in hospital. The physical hospital environment consists of ambiance, aesthetics, and architectural factors, and it is well known that the hospital's acute wards are not a homely environment. Demand is increasing for the physical environment to be improved to better meet the needs and demands of palliative and end-of-life patients and their families. Method: Combining thematic analysis and meta-ethnography methodologies, 12 international qualitative papers were analyzed and synthesized by the three authors. Results: Findings resulted in the development of the SSAFeR Place approach that incorporates the concepts that are important to palliative and end-of-life patients and their families by describing an environment within the acute or palliative care units that feels safe, is private, customizable, and accommodates family; is a space to share with others, is homelike in ambiance and aesthetics, and is conducive for reflection. The concepts of identity, belonging, and safety are connected to the notions of home. Conclusions: To provide person-centered care and to move the focus toward the palliative approach of comfort and quality of life, attention to room size, layout, aesthetics, and ambiance is needed. [ABSTRACT FROM AUTHOR]

Introduction: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. Aim: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. Design: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. Setting/participants: Adult national survey respondents – England. Results: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. Conclusion: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population. [ABSTRACT FROM AUTHOR]

The study aimed to explore experiences of encounters with health care professionals among patients receiving palliative cancer care in specialist palliative care inpatient units. A qualitative explorative study design was conducted in a specialist palliative care inpatient setting. Data collection was implemented using semi-structured individual interviews (20 palliative care cancer patients) and analysed with inductive content analysis. Palliative care patients experienced both meaningful and disrespectful encounters with healthcare professionals. The meaningful encounters encompassed authentic and supportive experiences, while the disrespectful encounters included indifferent and inadequate experiences. Caring for a patient receiving palliative care requires care beyond tending to a patient's physical needs. Patients should be encountered holistically and as equal human beings without highlighting their roles as patients. The healthcare professionals and the organisations should also acknowledge the importance of time and effort spent for encounters and conversations with the patients instead of concentrating resources mainly on physical care. [ABSTRACT FROM AUTHOR]

Background: Providing end-of-life (EOL) care to pediatric patients and their families is challenging. Newly licensed nurses, especially those working with the hematology/oncology population, have little to no experience providing the specialized care needed for the dying child. An evidence-based continuing professional development activity provided a novel approach to improve the knowledge, attitudes, and comfort levels of nurse residents related to pediatric EOL care. Method: A high-fidelity simulation module of a pediatric oncology patient at the EOL was embedded into a 12-month nurse residency program. The module employed several teaching strategies including a storytelling approach. Results: Thirteen pediatric nurse residents participated in the program. While the evidence-based intervention increased participants' EOL care knowledge, their overall attitudes, and comfort levels remained unchanged. Discussion: EOL simulation with a storytelling approach is a highly valuable method of teaching new nurses how to care for a dying patient. Additional studies are needed to explore how to increase the comfort levels of new nurses in the delicate population of pediatric hematology/oncology. [ABSTRACT FROM AUTHOR]

Background: The drive for home care has increasingly impacted the organization and allocation of resources within the Swedish healthcare system. Objectives: With an interest in uncovering prerequisites for palliative care, this study aimed to investigate longitudinal trends in place of death within the adult Swedish population from 2013 to 2019 and examine potential associations between place of death and individual, geographic, and socioeconomic factors; hospital capacity; and healthcare utilization. Methods: This population-level comprehensive register study included all deceased individuals ⩾18 years old with a registered place of death (n = 599,137). Data were retrieved from public and patient data registers and the national register for palliative care. Trends and associations between place of death and co-variables were investigated by logistic regression- and interaction analyses. Results: From 2013 to 2019, the total number of home deaths increased by 1.9%, whereas the number of hospital deaths decreased by 2.6%. In the overall population of individuals living in their own homes, from 2013 to 2019, the likelihood of dying in hospital versus dying at home decreased (odds ratio: 0.98, 95% confidence interval: 0.97–0.99). Within the population with potential palliative needs living in their own home (78.4%), the likelihood of dying in hospitals equally decreased, except in Stockholm and the north region. For individuals residing in a nursing home, however, the likelihood of dying in hospital versus remaining in the nursing home until death only significantly decreased in the southern region. Conclusion: The results show a trend towards a decrease in hospital deaths but with cross-regional variations. Still, in 2019, only about one-fifth of all individuals died in their own homes. Public health-oriented interventions aimed at strengthening palliative care resources in nursing homes and home care are suggested. [ABSTRACT FROM AUTHOR]

Introduction: Little is known regarding circumstances surrounding advanced care planning (ACP) for patients with amyotrophic lateral sclerosis (ALS). We aim to describe preferences, and perspectives surrounding ACP in patients with ALS. Methods: We conducted a survey of patients with ALS. Survey questions were related to advance directive completion and ACP discussions regarding end-of-life (EoL) choices. Results: 49 surveys were included. Patients have given thought to advance directives, goals of care, and EoL treatments within months of diagnosis (Median: 1 month; IQR:.6 – 3 months). Twenty-seven opened dialogue with spouses, 24 with family members, 19 with health professionals and 16 with their lawyer. Eighty percent were comfortable discussing advance directives and power of attorney while fewer (70%) are less comfortable regarding specific aspects of care such as CPR or invasive ventilation. Only one barrier to discussion was identified with one patient reporting they did not wish to talk about the topic. There was no significant correlation between timing of diagnosis and whether an EoL discussion had occurred (τb =.23, P =.14: n = 42). Level of feeling informed was significantly associated with making EoL decisions for CPR, legal arrangements for a decision maker and completion of living will or AD. Conclusion: In this small cohort, a substantial proportion of ALS patients initiated EoL conversations early. When feeling informed, patients were more likely to make specific EoL choices. Findings suggest an opportunity for providers to help facilitate conversations, ensuring patient wishes. [ABSTRACT FROM AUTHOR]

Introduction: This study describes the end-of-life (EOL) care planning and bereavement practices among adult day services centers (ADSC) when an ADSC participant is dying or has died. Methods: Data are from the 2018 National Study of Long-term Care Providers' biennial survey of ADSCs. Respondents were asked about the following 4 practices: 1) honoring the deceased in some public way in this center; 2) offering bereavement services to staff and participants; 3) documenting in the care plan what is important to the individual at the end of life (EOL), such as the presence of family or religious or cultural practices; and 4) discussing spiritual needs at care planning conferences. ADSC characteristics included US Census region, metropolitan statistical area status, Medicaid authorization, electronic health records (EHR) use, for-profit status, employment of aides, services provision, and model type. Results: About 50% to 30% of ADSCs offered the EOL care planning or bereavement services. Honoring the deceased was the most common practice (53%), followed by bereavement services (37%), discussing spiritual needs (29%), and documenting what is important at EOL (28%). Fewer ADSCs in the West had EOL practices relative to the other regions. The EOL planning and bereavement practices were offered more often in ADSCs that used EHRs, accepted Medicaid, employed an aide, provided nursing, hospice, and palliative care services, and were categorized as medical models, compared with ADSCs without these characteristics. Conclusion: These results highlight the importance of understanding how ADSCs provide EOL and bereavement care to participants who are near EOL. [ABSTRACT FROM AUTHOR]

Background: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. Aim: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. Design: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. Setting: European. Participants: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. Results: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. Conclusions: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals. [ABSTRACT FROM AUTHOR]

Background: We describe two complex cases in the setting of COVID-19 at the End of Life, to enhance learning for all patients. Case Presentation: Maintenance of sustained comfort in two cases required multiple drugs, specifically selected for symptoms that necessitated three separate pumps delivering continuous 24-hour subcutaneous infusion. Case Management: Management of sustained comfort included opioid, midazolam, anti-secretory, diclofenac for intractable temperature, phenobarbital for extreme agitation, in one, where seizure activity was present, while insomnia, was a prominent feature of another. Management of Akatasia was also required. Case Outcome: Attention to each individual patient's rapidly evolving symptoms, during the dying phase, with a thorough differential diagnosis, wa s vitally important in the context of a 'Good Death'. This was achieved in both cases, reflected by evidence at the bedside of comfort and a minimum need for 'as required' drugs in the last days of life. Conclusions: COVID-19 being a new illness, we need to prospectively study the symptom burden/clustering at End of Life and learn from management of this new disease for other illnesses also. Further research is required to develop protocols on; when does Midazolam dose reach tolerance and when should an alternative drug such as phenobarbital for sustained Gamma-Aminobutyric Acid effects be initiated; examine the optimal approach to sustained temperature control; be cognisant of extrapyramidal side effects of drugs used at End of Life and consider looking at a lack of need for 'as required' drugs in the last days of life as an outcome measure of sustained comfort. [ABSTRACT FROM AUTHOR]

This scoping review aimed to explore what is known about palliative and End-of-Life (EOL) care access by immigrants with culturally and linguistically diverse (CALD) background living in high-income Organization for Economic Co-operation and Development (OECD) countries. CaLD immigrants have low utilization of palliative care services with patients' family members taking up the role of caring, leading to immigrants not fully benefiting from the specialized services that are offered to alleviate suffering and promote quality of life. While there is some research in this area mainly in Europe, it cannot be said about all high-income OECD countries. Achieving person-centered care in high-income countries, requires identifying and addressing barriers to care access, especially by immigrants with CaLD background. Five-stage methodological framework by Arksey and O'Malley was used to undertake the review. Immigrants in OECD countries experience challenges in accessing palliative and EOL care services. The review also identified limited literature on the subject and establishes need for more research on the subject. [ABSTRACT FROM AUTHOR]

The interest in airless or non-pneumatic tire (NPT) structures emerges due to potential performance and environmental advantages, such as reduced rolling resistance and improved recyclability, when compared with traditional rubber-based pneumatic tires. NPTs can already be found in commercial applications such as forklifts, electric scooters, and wheelchairs. Even so, up to the knowledge of authors, there is no known established large-scale production of NPTs for most applications. This work presents a systematic literature review regarding the mechanical design and development of NPTs. A summary of structural characteristics and mechanical behaviour analysis is provided. Relevant standards, analysis strategies, materials, production techniques, and the end-of-life of tires are addressed. In the end, the authors debate the current challenges and prospects of these emergent products. Furthermore, this research aims at being used as a tool, potentiating the development of innovative and efficient, airless tire solutions. The review presented clarifies that many academic efforts are focused on finding optimal functional designs, which are frequently complex and physically demanding. These geometrically complex design proposals are, in most cases, composed of intricate cellular structures and spokes arrangements. Based on the current lack of knowledge, authors identify key research areas to be further developed such as the production, performance, and reliability of NPTs. It is debatable whether there will ever be a shortcoming of the rubber tire, or a time when fully recyclable tires are a societal obligation. Nevertheless, the number of reasons to promote the development of a reliable replacement to the traditional tire is far from scarce. [ABSTRACT FROM AUTHOR]

Death is a ubiquitous theme in television dramas and we argued that mediated depictions of end-of-life experiences have the potential to provide glimpses into the ways in which characters experience real-life issues and can serve as conversation starters within family viewers. The study aimed to identify how a popular television drama, This is Us, depicted end-of-life communication. Analysis of season one revealed 54 conversations about end-of-life, two explicit death scenes, and three implied death scenes. Results also illustrate how the storyline within the show clearly depicts the impact end-of-life has on the family system, emphasizing the ongoing interdependence, hierarchy, and boundary (re)negotiation as a result of death. Findings advance understanding of how mediated narratives can illustrate end-of-life scenarios and conversations within the family system and can provide observational opportunities for modeling end-of-life communication behaviors within their families. [ABSTRACT FROM AUTHOR]

Background: Like many countries where voluntary assisted dying (VAD) is legal, eligible doctors in Victoria, Australia, have sole legal authority to provide it. Doctors' attitudes towards legalised VAD have direct bearing on their willingness to participate in VAD and consequently, on whether permissive laws can effectively facilitate access to VAD. The study aimed to explore how some Victorian doctors are perceiving and experiencing the provision of legalised VAD under a recently commenced law. Methods: Semi-structured interviews with 25 Victorian doctors with no in-principle objection to legalised VAD were conducted between July 2019-February 2020. Interviews were recorded, transcribed, and analysed using thematic analysis. Ethical approval from the relevant institution was obtained. Results: Doctors perceive or experience VAD to fundamentally challenge traditional medical practice. Barriers to access to VAD derive from applicant, communication, and doctor-related factors. Doctors' willingness to participate in VAD is situation specific. [ABSTRACT FROM AUTHOR]

Increased advance care planning was endorsed at the start of the Coronavirus disease 2019 (COVID-19) pandemic with the aim of optimizing end-of-life care. This retrospective observational cohort study explores the impact of advanced care planning on place of death. 21,962 records from patients who died during the first year of the pandemic and who had an Electronic Palliative Care Coordination System record were included. 11,913 (54%) had a documented place of death. Of these 5,339 died at home and 2,378 died in hospital. 9,971 (45%) had both a documented place of death and a preferred place of death. Of these, 7,668 (77%) died in their preferred location. Documented elements of advance care planning, such as resuscitation status and ceiling of treatment decisions, were associated with an increased likelihood of dying in the preferred location, as were the number of times the record was viewed. During the COVID-19 pandemic, advanced care planning and the use of digital care coordination systems presented an opportunity for patients and healthcare staff to personalize care and influence end-of-life experiences. [ABSTRACT FROM AUTHOR]

Disparity in hospice use threatens optimal quality of life during the final stage of life while American Indians/Alaska Natives may not be aware of hospice benefits. Our established Blackfeet members and Montana State University collaborative team conducted a modified Duke End-of-Life Care Survey (8 sections with 60 questions) to assess a baseline end-of-life values, beliefs, and attitudes of Blackfeet individuals. In this manuscript, we present the results of 3 sections with 28 questions: Preference of Care; Beliefs About Dying, Truth Telling, and Advance Care Planning; and Hospice Care by examining overall and generational differences. Most participants (n = 92) chose quality of life over quantity of life with using various devices if they had an incurable disease (54-82%), would want to know if they were dying (92%) or had cancer (89%), but had not thought or talked about their preference of end-of-life care (30% and 35% respectively). The results portray understandable cultural context as well as generational differences with personal variability. While an affirmative shift towards hospice was emerging, dissemination of accurate hospice information would benefit people in the partner community. In conclusion, an individual-centered approach—understanding individual need first—may be the most appropriate and effective strategy to promote hospice information and its use. [ABSTRACT FROM AUTHOR]

Background/objectives: The role of palliative care in the support of patients with neuromuscular disorders (NMDs) is generally recognised in spite of the scarcity of condition-specific evidence in the literature. Methods: We have focussed specifically on palliative and end-of-life care for patients whose neuromuscular disease has an impact on their respiratory function. Reviewing the literature, we have examined where existing palliative care knowledge can be applied to the specific challenges faced by patients with NMDs, identifying where lessons learnt during the management of one condition may need to be judiciously applied to others. Results: We highlight lessons for clinical practice centring on six themes: management of complex symptoms; crisis support; relief of caregiver strain; coordination of care; advance care planning; and end of life care. Conclusions: The principles of palliative care are well suited to addressing the complex needs of patients with NMDs and should be considered early in the course of illness rather than limited to care at the end of life. Embedding relationships with specialist palliative care services as part of the wider neuromuscular multidisciplinary team can facilitate staff education and ensure timely referral when more complex palliative care problems arise. [ABSTRACT FROM AUTHOR]

Despite documented benefits of advance care planning (ACP), understandings about the impact of advance directives (AD)—critical steps in the ACP process—remain limited. As a type of AD, living wills (LWs) are often misplaced or forgotten about. This study explores the prevalence of missing LWs among older adults in the U.S. and its association with in-hospital death and hospice care use. Analyses are based on 692 participants who responded to LW completion questions in the 2016 Core and 2018 wave of the Health and Retirement Study Nearly a fifth of American older adults age 65+ had an LW that went missing. Stepwise logistic regression results show that completed LWs confirmed by both individuals and their proxies were associated with increased hospice use and fewer hospital deaths. Individuals whose LWs went missing still had better end-of-life care than those who did not have an LW. [ABSTRACT FROM AUTHOR]

Background: Palliative care requires innovative methods to understand what works, for whom, in what circumstances and why. Realist evaluation has become one prominent approach due to its preoccupation with building, and testing, causal theories to explain the influence of contextual factors on outcomes. Undertaking realist evaluation is not without challenges and may amplify issues of underrepresentation, disempower those working in palliative care, and produce results with poor ecological validity. Complementary approaches are needed which mitigate these challenges, whilst producing credible findings that advances knowledge. Purpose: In this article it is outlined how realist evaluation provides a toolkit to advance research to explain, and empirically test, the complex contours of palliative care. Moreover, it is proposed that transformative evaluation can provide a catalyst to engage and empower those within palliative care, create the opportunity for care transformation, and produce more informed and authentic theories. Discussion: Contemporary issues in palliative care pertain to the complexity of palliative care, the insufficiency of experimental designs alone, and the challenges of achieving inclusive research participation. In this article it is argued that theory led, participatory, opportunistic and naturalistic approaches can provide an antidote to the issues in the literature. The combination also mitigates many methodological critiques of the individual approaches, by increasing the transformative potential of realist evaluation, and explanatory potential of transformative evaluation. [ABSTRACT FROM AUTHOR]

Aims and Objectives: The goal of the present study was to explore anticipatory grief experiences among primary caregivers in home-based palliative care. We placed a special emphasis on coping methods adopted by individuals from Eastern cultures when facing death. Background: Most patients prefer spending their last days at home, which often exerts considerable physical and mental stress on their primary caregivers. Design: This study adopted a qualitative exploratory research design and used open-ended in-depth interviews to explore anticipatory grief experiences among primary caregivers of patients receiving palliative home care. Methods: In the study of the factors that Anticipatory Experience of Grief among Primary Caregivers in Palliative Home Care, we used the phenomenological approach and methods to glean answers. Posters and snowball sampling were used to individually recruit participants. In total, 16 primary hospice home caregivers participated. We used semi-structured interviews to collect data. The interviews were audio-recorded in a quiet location. Each interview was divided into two to three sessions, and each session lasted 60-90 minutes. For data analysis, field notes and audio recordings are transcribed into protocols. A thematic analysis method was used to analyze the context of the interviews. Sampling and analysis processes were repeated until theoretical saturation was achieved. Results: Four major themes emerged from the categorized interview data: meaning and manifestation as to the essence of life, the art of coping with death, realization and the gift of death, and adapting, coping with, and controlling emotions. Additionally, we observed, as with many Eastern cultures, a lunar calendar death in July and crying at the death of a relative is considered taboo. Conclusions: The coping methods adopted by individuals in Eastern cultures when facing death were summarized accordingly. These findings could serve as a reference to better understand the coping mechanisms these individuals use to address anticipatory grief when facing a family member's impending death. Relevance to Clinical Practice: Potential relevance for the present findings include acceptance of Eastern cultural grief customs, early hospice and palliative care interventions for helping individuals adjust to their grief, case management and resource consolidation, providing 24-hour telephone consultation services, regular assessment visits, and developing localized teaching materials for life-and-death education. [ABSTRACT FROM AUTHOR]

We examine and integrate last two decades of research on euthanasia from a cultural perspective. After an exhaustive search from Scopus and Web of Science, 40 studies matching our criteria are included in the review. We qualitatively summarize the literature country-wise and use text map of co-occurring terms in the titles, keywords, and abstracts of these articles to determine the similarities and differences among sub-themes in continental clusters. Research done in Asian, European, North American, and multi-cultural studies suggests that attributes unique to each culture are instrumental in shaping public attitudes towards euthanasia. We also find that some cultures, despite the prevalence of euthanasia, are underrepresented in empirical research. This review of literature on the cultural nuances in end-of-life decisions such as euthanasia is pertinent to social scientists, healthcare professionals and social workers in any given time, but more so during such critical events as worldwide COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

This article explores the experiences of young adults with a life-shortening condition in the first wave of the Coronavirus (COVID-19) pandemic in the UK. It presents the findings from an inclusive qualitative research study using constructivist grounded theory which aimed to examine the unintended consequences of pandemic control measures (lockdown and 'shielding') on this population. Purposive and theoretical sampling methods were used to recruit young adults with a life-shortening condition, employing a range of recruitment methods such as social media, advertising in newsletters and snowballing. Twenty-six young adults (aged 22–40 years), with a wide range of life-shortening conditions participated in the study. Seventeen participants were female and nine male. The majority identified as White British/Other and the remainder as Black British (2), Mixed Race (2) or Latin American (1). Data were generated iteratively using in-depth guided interviews and analysed collectively by an inclusive research team using the constant comparative method. The article explores a theory of embodied precariousness of living with a life-shortening condition during the first wave of the Coronavirus pandemic in relation to three categories: the rationing of life-saving treatment, the deterioration of health and retraction of healthcare provision, and the disruption of typical care arrangements. The findings show that the pandemic control measures introduced to keep people safe have intensified the precarity of this group promoting inequalities in healthcare and health outcomes. The article identifies some implications for practice to support the future management of unexpected and unwanted change. [ABSTRACT FROM AUTHOR]

Background/Objectives: Compassionate Cities are social ecology approaches that apply a set of actions, targeting a broad range of stakeholders, with the intention of renormalising caring, dying, loss and grieving in everyday life. While several initiatives have been described in the literature, a rigorous evaluation of their processes and outcomes is lacking. This article describes the protocol for a mixed-methods study to evaluate the development process and the outcomes of two Compassionate Cities in Flanders, Belgium. Methods and Analysis: We will use a convergent multiphase mixed-methods design, in which a combination of qualitative and quantitative data collection methods will be triangulated in the data analysis stage to capture both development processes and outcomes. Our design includes a quasi-experimental component of a quantitative outcome evaluation in both Compassionate Cities and two comparable control cities with no formal Compassionate City programme. Both Compassionate Cities will be co-created in collaboration with local stakeholders. A critical realism lens will be applied to understand how and why certain processes manifest themselves. Discussion: The creation of Compassionate Cities implies high levels of complexity, adaptivity, unpredictability and uncertainty. This requires various data collection methods that can be applied flexibly. A researcher taking on the role of active participant in the project's development has several advantages, such as access to scholarly information. Reflexivity in this role is paramount to questioning where the ownership of the project lies. By applying a critical realism lens, we remain cautious about our interpretations, and we test the homogeneity of our findings through other forms of data collection. Conclusion: This is the first published study protocol to describe both a process and outcome evaluation of a Compassionate City project. By transparently describing our aims and data collection methods, we try to maximise information exchange among researchers and to inform others who desire to implement and evaluate their own initiatives. [ABSTRACT FROM AUTHOR]

Objective: Older adults are a rapidly growing segment of the global population; a paucity of research exists on social workers supporting this vulnerable group in integrated health care that focuses on both physical and behavioral health. To fill the gap, this study explored social workers' perspectives of working with older adults in integrated healthcare settings. Methods: Using qualitative methods, a constant comparison data analysis approach was conducted to identify themes. Results: Themes included: (1) working with and highlighting the unique needs of older adults in integrated health, (2) identifying skills needed for working as a social worker within integrated healthcare settings, (3) supporting patient families, and (4) needing to make decisions on behalf of patients. Discussion: Study findings demonstrate social workers as key members of interdisciplinary team as well as highlight the unique needs, skills, and challenges for working with older adults in integrated healthcare settings. [ABSTRACT FROM AUTHOR]

Background: Alzheimer's disease and related dementias (AD/ADRD) are terminal conditions impacting families and caregivers, particularly at end-of-life. Longitudinal, secondary data analyses present opportunities for insight into dementia caregiving and decision-making over time; however, joining complex datasets and preparing them for analysis poses many challenges. Objectives: To describe an approach to linking national survey data of older adults with their primary caregivers to build a prospective, longitudinal dataset, and to share the Statistical Analysis System (SAS) coding statement algorithms with other researchers. Methods: The National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) are joined using a series of algorithms based on conceptual and operational definitions of dementia, primary caregivers, and the occurrence of death. A series of SAS algorithms resulting in the final longitudinal dataset was created. Results: NHATS/NSOC participants were linked using three preliminary data files (n = 12 427) and one final data join (n = 3305) over nine rounds of data collection. Presence of dementia was defined based on the indicator in the year preceding the last month-of-life (LML) interview. Primary caregivers were defined as the person providing the most frequent care over time. Additional flag variables (LML interview, dementia classification, and cohort (2011 vs 2015)) were created. The SAS algorithms are presented herein. Discussion: The SAS coding statement algorithms provide an opportunity to conduct longitudinal analysis of care for both members of the dyad in the context of dementia and end-of-life. Future research using the proposed dataset can further explore care and caregiving in these populations. [ABSTRACT FROM AUTHOR]

Background: Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic. Methods: This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia. Results: Forty family carers (male n = 9, female n = 31) age range: 18–86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer. Conclusion: This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the 'expert' in terms of their knowledge of their relatives' care and preferences. [ABSTRACT FROM AUTHOR]

Background: As deaths in hospitals increase, clear discussions regarding resuscitation status and treatment limitations, referred to as goals of care (GOC), are vital. GOC may need revision as disease and patient priorities change over time. There is limited data about who is involved in GOC discussions, and how this changes as patients deteriorate in hospital. Aims: To review the timing and clinicians involved in GOC discussions for a cohort of patients who died in hospital. Methods: Retrospective observational audit of 80 consecutive end of life admissions between March 11th and April 9th, 2019. Results: Of 80 patients, 75 (93.6%) had GOC recorded during their admission, about half for ward-based non-burdensome symptom management or end-of-life care. GOC were revised in 68.0% of cases. Medical staff involved in initial versus final GOC discussions included home team junior doctor (54.7% versus 72.5%), home team consultant (37.3% versus 56.9%) and ICU doctor (16.0% versus 21.6%). For initial versus final GOC decisions, patients were involved in 34.7% versus 31.4%, and family in 53.3% versus 86.3%. Dying was documented for 92.0% of patients and this was documented to have been communicated to the family and patient in 98.6% and 19.5% of cases respectively. Conclusions: As patients deteriorated, family and senior clinician involvement in GOC discussions increased, but patient involvement did not. Junior doctors were most heavily involved in discussions. We advocate for further GOC training and modeling to enhance junior doctors' confidence and competence in conducting and involving patients and families in GOC conversations. [ABSTRACT FROM AUTHOR]

Background: Death doulas have gained greater attention recently by offering psychosocial, spiritual and other non-clinical support for patients with time-limiting diseases, including their families, with the potential to complement existing end-of-life care services. However, their roles, scope of practice and care impact remain poorly understood. Aim: To describe existing knowledge on death doulas regarding their roles, care impact, training and regulation. Design: This scoping review utilised Levac et al.'s framework and textual narrative synthesis to summarise the findings. Data sources: PubMed, Scopus, CINAHL, PsycINFO, ProQuest, Google Scholar were searched for relevant articles from inception to 20 May 2021. Empirical studies, narrative reports, unpublished theses and studies in English were included. Results: Thirteen articles were included. Death doulas take on diverse roles in end-of-life care. Their roles include providing psychosocial, spiritual, practical support, companionship and resource navigation. The positive impacts of engaging a death doula include continuous presence, holistic service and flexible payment regime. The negative aspects include role inconsistencies and confusion among healthcare professionals and the public. Conclusions: Death doulas can augment existing end-of-life care services by providing holistic and personalised care services at home or hospital settings. Their roles are still evolving and remain mostly unregulated, with little evidence about their impact. There is a need for more rigorous studies to explore healthcare professionals' views about this role and examine the clinical outcomes among dying persons and their families. [ABSTRACT FROM AUTHOR]

Background: Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods: We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results: End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion: Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future. [ABSTRACT FROM AUTHOR]

This study describes the development and the preliminary validation of the Family Caregiver Anticipatory Grief Clinical Interview (FcAG-CI). This instrument, conceptually based in Adult Attachment Theory, evaluates Anticipatory Grief response patterns of cancer family caregivers; semistructured interviews were conducted in a sample of family caregivers in palliative care (n = 72, mostly women, adult children, or spouses, mean age of 52.37) and coded according to the rating guidelines. FcAG-CI, composed of eight domains, shows convergent and concurrent validity with self-reported predeath prolonged grief disorder symptoms as well as divergent validity with the Zarit Burden Interview. The tests for reliability suggest that it has reasonable consistency (Cronbach's α =.750) and very good interrater reliability. Two factors were identified, corresponding to the two major sources of distress: traumatic and relational aspects of end-of-life caregiving. This instrument, allows the categorization of respondents in four different profiles (Avoidant, Adjusted, Traumatic, and Intense Anticipatory Grief), with clear implications for clinical practice. [ABSTRACT FROM AUTHOR]

We examined whether Medical Marijuana Legislation (MML) was associated with site of death. Using state-level data (1992–2018) from the National Vital Statistics System (NVSS), we employed difference-in-differences method to compare changes in death rate among older adults at four sites—nursing home (NH), hospital, home, hospice/other—over time in states with and without MML. Heterogeneity analyses were conducted by timing of MML adoption, and by decedent characteristics. Results show a negative association between MML implementation and NH deaths. Among early adopters (states with weakly regulated programs) and decedents with musculoskeletal disorders, there was a positive association between MML implementation and hospital deaths, whereas among late adopters (states with "medicalized" programs), there was a positive association between MML implementation and hospice deaths. Decline in NH deaths may reflect increased likelihood of transfers due to threat of Federal enforcement, penalties for poor outcomes, and liability concerns. Future studies should examine these associations further. [ABSTRACT FROM AUTHOR]

Background: Healthcare providers increasingly care for patients with Limited English Proficiency (LEP). There is limited research evaluating healthcare provider utilization practices, attitudes, perceived benefits and barriers regarding the use of medical interpreters in end of life (EOL) and goals of care (GOC) conversations. Objectives: To elicit healthcare providers' opinions of the role, factors that impact decisions to use medical interpreters and perceived utility of using medical interpreters when conducting EOL and GOC conversations with LEP patients and their families. Design: Cross-sectional survey of internal medicine trainees and attending physicians from a U.S. medical center. Results: A total of 117 surveys were collected with a response rate of 51%. In-person medical interpreters received higher ratings with regard to their helpfulness compared to telephone medical interpreters during EOL and GOC conversations. Being an attending physician and having received training in the use of a medical interpreter predicted higher composite scores reflecting greater awareness of the roles of medical interpreters and endorsement of best communication practices. In-person interpreters were viewed by a subset of participants as "standard of care" during EOL and GOC conversations. Conclusion: Having more years in practice and receiving training in the use of medical interpreters correlated with more favorable attitudes toward the role of medical interpreters and positive communication practices. Incorporating early training in the use of medical interpreters could help enhance communication practices and outcomes during EOL and GOC conversations with LEP patients. [ABSTRACT FROM AUTHOR]

Introduction: Dying in the hospital is not always a good experience for patients and their families. To be more in line with evidence-based practices for healthcare workers to effectively support high quality end of life care, the project team implemented a standardized communication tool to alert interdisciplinary team members of patients on comfort care measures. Methods: Purple Butterfly was a quality improvement project that was implemented at a diverse community hospital in the urban setting. Clinical and non-clinical interdisciplinary team members participated in a pre- and post- implementation survey to assess the need for a standardized communication tool that would alert them of patients who transitioned to comfort care. Results: Pre-implementation, 37% of survey respondents (n = 60) reported they were always aware of the presence of a patient on comfort care measures prior to entering the room. After implementation of a standardized communication tool, 100% (n = 43) of respondents at 9 months, reported that they were always aware of the presence of a patient on comfort care measures prior to entering the room. Additionally, 9 months post-intervention 100% of respondents reported that knowing this contextual information supported them in performing their job duties in a compassionate, patient-centered fashion. Conclusion: Implementation of a standardized communication tool increased awareness for team members, about the presence of patients on comfort care measures prior to entering the room and supported team members to perform their job duties in a compassionate, patient-centered fashion supportive of this patient population. [ABSTRACT FROM AUTHOR]

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations. [ABSTRACT FROM AUTHOR]

This study aims to analyse the impact that a psychological intervention programme has on the emotional state of family caregivers of patients at the end of life. The study is longitudinal with two arms (control and experimental). Data was collected from 154 primary family caregivers of patients at the end of life as well as from their respective 154 care-recipients. The intervention programme has shown its effectiveness in reducing anxiety, emotional distress and burden in the family caregivers of end-of-life patients. A reduction of anxiety of patients whose family caregivers participated in the intervention was also observed. [ABSTRACT FROM AUTHOR]