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The COVID-19 pandemic has been associated with the highest death rate in the UK for over 10 years. There has been a marked shift of place of death into the community across the UK between March 2020 and 2021. Deaths at home increased by 67% during the first wave of the pandemic. There was a sustained increase of 33% above expected between the first two waves, and 43% above expected in the second wave.1 Nationally reported data identifies large changes in where people are dying, but little is understood about the circumstances of these deaths, the quality of end-of-life care in the community during the pandemic, or the services received.

Objective To examine advance care planning (ACP) trends among an increasingly diverse aging population, we compared informal and formal ACP use by race/ethnicity among U.S. older adults (≤65 years). Methods We used Health and Retirement Study data (2012–2018) to assess relationships between race/ethnicity and ACP type (i.e., no ACP, informal ACP only, formal ACP only, or both ACP types). We reported adjusted risk ratios with 95% confidence intervals. Results Non-Hispanic Black and Hispanic respondents were 1.77 (1.60, 1.96) and 1.76 (1.55, 1.99) times as likely, respectively, to report no ACP compared to non-Hispanic White respondents. Non-Hispanic Black and Hispanic respondents were 0.74 (0.71, 0.78) and 0.74 (0.69, 0.80) times as likely, respectively, to report using both ACP types as non-Hispanic White respondents. Discussion Racial/ethnic differences in ACP persist after controlling for a variety of barriers to and facilitators of ACP which may contribute to disparities in end-of-life care.

Substance use disorder is a chronic disease carrying a high risk of morbidity and mortality. We report a case of a patient on long-term opioid agonist treatment who was diagnosed with metastatic cholangiocarcinoma and was referred to palliative care services almost contemporaneously with this diagnosis. In this report, we explore the challenges posed in offering holistic care during the end of life of a patient with a history of opioid dependence. A coordinated approach by addiction medicine and palliative care teams can allow patients from this complex cohort to ultimately die with dignity.

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants’ responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient’s terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient’s needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs’ expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.

Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility.To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness.We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care.Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients' wishes will be honored and revisited at end-of-life. An iterative, 'building block' framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations.We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.

Although the practice of forgiveness is encouraged, the healing properties of this virtue by health care professionals are often overlooked. Forgiveness is the voluntary, conscious decision to abandon negative feelings toward another who has caused hurt and replacing those feelings with unconditional love and compassion. It is not about forgetting the hurt or ignoring the pain; it is an actual transformation of the heart. The Enright Forgiveness Process Model and the Pyramid Model of Forgiveness are 2 models that facilitate the forgiveness process. By utilizing either of these pathways, the forgiver ultimately experiences peace of mind and a "release from emotional prison" that leads to holistic healing. As a result, the forgiver experiences lower levels of depression, anxiety, and aggression, which improves quality of life. In addition, physiological benefits such as decreased stress levels, lower blood pressure, and a lower heart rate have also been reported. Throughout the course of their careers, nurses encounter patients and families in acute or end-of-life care situations who want to forgive or be forgiven. As holistic health care providers, nurses should be able to facilitate and close this gap in patient care. This article attempts to raise awareness to the importance of forgiveness in health and well-being among nurses and other health care professionals.

During acute health decompensations for seriously ill patients, emergency clinicians often determine the intensity end-of-life care. Little is known about how emergency clinicians conduct these conversations, especially among those who have received serious illness communication training.To determine the self-reported practice patterns of code status conversations by emergency clinicians with and without serious illness communication training.A cross-sectional survey was conducted among emergency clinicians with and without a recent evidence-based, serious illness communication training tailored for emergency clinicians. Emergency clinicians were included from two academic medical centers. A five-point Likert scale ("very unlikely" to "very likely" to ask) was used to assess the self-reported likelihood of asking about patients' preferences for medical procedures and patients' values and goals.Among 161 respondents (71% response rate), 77 (48%) received the training. A total of 70% of emergency clinicians reported asking about procedure-based questions, and only 38% reported asking about patient's values regarding end-of-life care. For value-based questions, statistically significant differences were observed between emergency clinicians who underwent the training and those who did not in four of the seven questions asked (e.g., the higher odds of exploring the patient's life priorities [adjusted OR = 4.34, 95% CI = 1.95-9.65, P-value0.001]). No difference was observed in the self-reported rates of all procedure-based questions between the two groups.Most emergency clinicians reported asking about procedure-based questions, and some asked about patient's value-based questions. Clinicians with recent serious illness communication training may ask more about some values and priorities.

Anesthesiologists receive extensive training in the area of perioperative care and the specialized skills required to maintain life during surgery and complex procedures. Integrated into almost every facet of contemporary medicine, they interact with patients at multiple stages of their health care journeys. While traditionally thought of as the doctors best equipped to save lives, they may also be some of the best doctors to help navigate the chapters at the end of life. Successfully navigating end-of-life care, particularly in the COVID-19 era, is a complicated task. Competing ethical principles of autonomy and nonmaleficence may often be encountered as sophisticated medical technologies offer the promise of extending life longer than ever before seen. From encouraging patients to actively engage in advance care planning, normalizing the conversations around the end of life, employing our skills to relieve pain and suffering associated with dying, and using our empathy and communication skills to also care for the families of dying patients, there are many ways for the anesthesiologist to elevate the care provided at the end of life. The aim of this article is to review the existing literature on the role of the anesthesiologist in end-of-life care, as well as to encourage future development of our specialty in this area.

Dietary advice, the provision of timely nutritional support and the alleviation of diet-related issues, should be an essential component of a holistic approach to palliative and end-of-life care, adjusted to account for the stage in the patient's journey, including prognosis. With an ageing population and increasing numbers of people living with not just one life-limiting disease but several, the dietary management of these patients is becoming more complex. This article considers the issues patients and families experience, how nurses can play a key role in identifying and alleviating nutrition- and diet-related issues in palliative care, including the use of tools to screen, assess and guide nutrition conversations and interventions. The content of the article is mostly drawn from the literature relating to palliative cancer care, knowledge derived from stakeholder engagement, clinical observations in a dietetic role in a hospice setting and qualitative research on the role of diet in palliative care as perceived by patients, carers, and health professionals.

Population-based quality indicators of either aggressive or supportive care at end of life (EOL), especially when specific to a cancer type, help to inform quality improvement efforts. This is a population-based, retrospective cohort study of gastrointestinal (GI) cancer decedents in Ontario from 1 January 2006–31 December 2018, using administrative data. Quality indices included hospitalizations, emergency department (ED) use, intensive care unit admissions, receipt of chemotherapy, physician house call, and palliative home care in the last 14–30 days of life. Previously defined aggregate measures of both aggressive and supportive care at end of life were also used. In our population of 69,983 patients who died of a GI malignancy during the study period, the odds of experiencing aggressive care at EOL remained stable, while the odds of experiencing supportive care at EOL increased. Most of our population received palliative care in the last year of life (n = 65,076, 93.0%) and a palliative care home care service in the last 30 days of life (n = 45,327, 70.0%). A significant number of patients also experienced death in an acute care hospital bed (n = 28,721, 41.0%) or had a new hospitalisation in the last 30 days of life (n = 33,283, 51.4%). The majority of patients received palliative care in the last year of life, and a majority received a palliative care home service within the last 30 days of life. The odds of receiving supportive care at EOL have increased over time. Differences in care exist according to income, age, and rurality.

Contains fulltext : 287798.pdf (Publisher’s version ) (Open Access) The Family Perceptions of Physician-Family Caregiver Communication scale (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its validity has been tested only in the USA and the Netherlands. The aim of this paper is to evaluate the FPPFC construct validity and its reliability, as well as the psychometric characteristics of the items comprising the scale. Data were collected in cross-sectional study in Belgium, Finland, Italy, the Netherlands and Poland. The factorial structure was tested in confirmatory factor analysis. Item parameters were obtained using an item response theory model. Participants were 737 relatives of nursing home residents who died up to 3 months prior to the study. In general, the FPPFC scale proved to be a unidimensional and reliable measure of the perceived quality of physician-family communication in nursing home settings in all five countries. Nevertheless, we found unsatisfactory fit to the data with a confirmatory model. An item that referred to advance care planning performed less well in Poland and Italy than in the Northern European countries. In the item analysis, we found that with no loss of reliability and with increased coherency of the item content across countries, the full 7-item version can be shortened to a 4-item version, which may be more appropriate for international studies. Therefore, we recommend use of the brief 4-item FPPFC version by nursing home managers and professionals as an evaluation tool, and by researchers for their studies as these four items confer the same meaning across countries. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10433-022-00742-x.

Background: Providing end-of-life (EOL) care in the acute care setting has been challenging, with clinicians focused on curative treatments and prolonging life, while few nurses are receiving adequate training and support in caring for the dying. Aims: To assess if the introduction of a palliative care link nurse programme (PCLNP) improved nurses’ confidence in providing EOL care in the acute care setting. Methods: A total of 40 acute care nurses attended a full-day education session on core topics, followed by regular 3-monthly educational meetings. Participants were provided with ongoing support and mentoring and required to complete quality improvement activities. A mixed-research methodology was used. Findings: The PCLNP had a positive impact on nurses’ attitudes towards death and dying, and increased levels of comfort in providing EOL care to patients and supporting families. Nurses completed clinical audits and provided education to their colleagues. Conclusions: EOL care in this setting must be improved for both patients and their families. This programme has shown an increase in nurses’ knowledge and comfort level in providing EOL care. Further research into determining the direct impact on patient care and families is required.

Background Oncologists are often concerned that talking about death with patients may hinder their relationship. However, the views of death held by patients have not been thoroughly investigated. This study aimed to describe the perception of death among patients with advanced cancer receiving early palliative care (EPC) and their caregivers. Material and Methods Qualitative and quantitative analyses were performed on 2 databases: (a) transcripts of open-ended questionnaires administered to 130 cancer patients receiving EPC with a mean age of 68.4 years and to 115 primary caregivers of patients on EPC with a mean age of 56.8; (b) texts collected from an Italian forum, containing instances of web-mediated interactions between patients and their caregivers. Results Quantitative analysis shows that: (a) patients and caregivers are not afraid of speaking about death; (b) patients and caregivers on EPC use the word “death” significantly more than patients on standard oncology care (SOC) and their caregivers (P Conclusions EPC interventions, along with proper physician-patient communication, may be associated with an increased acceptance of death in patients with advanced cancer and their caregivers.

RNs lead care planning in long-term-care (LTC), yet there are knowledge gaps regarding their communication with residents and families about end-of-life (EOL) care preferences. A sample of 10 LTC RNs were virtually interviewed to describe their EOL care communication experience. Using an interpretative phenomenological framework, narrative analysis within an interpretive constructivism paradigm yielded four concepts— Being Together , Becoming Clear to Become Comfortable , Advocacy to Honor Residents, and Unique Impact on Nurses— which are all part of RNs' commitment to a continuous, dynamic EOL care communication process. Nurses commit to ongoing whole-person assessment and education, becoming proactive advocates for resident-centered, goal-concordant care. Their knowledge was experientially derived, as their nursing education did not adequately prepare them for EOL care communication or complex, multidimensional relationships with residents and families. Further research is needed to evaluate the nature and interaction and relative contribution of the components of EOL care communication in LTC. [ Journal of Gerontological Nursing, 48 (11), 29–36.]

Aggressive end-of-life (EOL) care that is not aligned with the preferences of persons with cancer has negative impacts on their quality of life. Alzheimer's disease and related dementias (ADRD) could potentially complicate EOL care planning among persons with cancer. Little is known about the aggressive EOL care patterns among Medicare beneficiaries with both cancer and ADRD.A matched retrospective cohort was created using the 2004 to 2016 Surveillance, Epidemiology, End Results-Medicare (SEER-Medicare) data differentiated by beneficiaries' ADRD status. Beneficiaries with breast, lung, colorectal, or prostate cancer who died between January 1, 2005 and December 31, 2016, were included. Six existing domains of aggressive EOL care and one overall indicator were derived. The major predictor was having ADRD comorbidity; other covariates included sex, marital status, census tract poverty indicator, race/ethnicity, metro status, geographic location, Charlson Comorbidity Index (CCI), survival time, cancer site, and histology stage. Multivariable logistic regression models were deployed to estimate the odds of receiving aggressive EOL care.The study sample was 135,380 people after the one-to-one propensity score matching. The prevalence of aggressive EOL care utilization was slightly lower in beneficiaries with both cancer and ADRD when compared to beneficiaries with cancer only (54% vs. 58%, p 0.0001). Beneficiaries with both cancer and ADRD were less likely to receive aggressive EOL care (AOR: 0.88, 95% CI: 0.86, 0.90) versus beneficiaries with cancer only. From the multivariable logistic regression model, certain beneficiaries' characteristics were associated with higher odds of receiving aggressive EOL care, such as: beneficiaries belonging to a racial/ethnic minority, a shorter survival time, and a higher CCI score.The combined presence of ADRD and cancer was associated with lower odds of receiving aggressive EOL care compared to the presence of only cancer; however, the prevalence difference between the cohorts was not huge. Future studies could conduct in-depth evaluations of the ADRD's influence on the EOL care utilization.

Prolonging life in the ICU increasingly is possible, so decisions to limit life-sustaining therapies frequently are made and communicated to patients and families or surrogates. Little is known about worldwide communication practices and influencing factors.Are there regional differences in end-of-life communication practices in ICUs worldwide?This analysis of data from a prospective, international study specifically addressed end-of-life communications in consecutive patients who died or had limitation of life-sustaining therapy over 6 months in 199 ICUs in 36 countries, grouped regionally. End-of-life decisions were recorded for each patient and ethical practice was assessed retrospectively for each ICU using a 12-point questionnaire developed previously.Of 87,951 patients admitted, 12,850 died or experienced a limitation of therapy (14.6%). Of these, 1,199 patients (9.3%) were known to have an advance directive, and wishes were elicited from 6,456 patients (50.2%). Limitations of life-sustaining therapy were implemented for 10,401 patients (80.9%), 1,970 (19.1%) of whom had mental capacity at the time, and were discussed with 1,507 patients (14.5%) and 8,461 families (81.3%). Where no discussions with patients occurred (n = 8,710), this primarily was because of a lack of mental capacity in 8,114 patients (93.2%), and where none occurred with families (n = 1,622), this primarily was because of unavailability (n = 720 [44.4%]). Regional variation was noted for all end points. In generalized estimating equation (GEE) analyses, the odds for discussions with the patient or family increased by 30% (OR, 1.30; 95% CI, 1.18-1.44; P .001) for every one-point increase in the Ethical Practice Score and by 92% (OR, 1.92; 95% CI, 1.28-2.89; P = .002) in the presence of an advance directive.End-of-life communication with patients and families or surrogates varies markedly in different global regions. GEE analysis supports the hypothesis that communication may increase with ethical practice and an advance directive. Greater effort is needed to align treatment with patients' wishes.

Background: Current evidence suggests that hospital nurses' end-of-life care is complex due to the conflicting tasks of treatment-focused care and palliation. This is a topic that needs further exploration. Aim: To understand hospital nurses' experiences of end-of-life care. Method: Interpretive phenomenology was used to explore 10 hospital nurses' experiences. Findings: Nurses' individual experience of death informed their attitudes to death. The dominant theme was death-as-calm, accompanied by human connection, and death-as-process. The nurses' actions indicated their end-of-life care included love, defined as a desire to create calm, grounded by the virtue of natural goodness, responsibility and dedication, with a willingness to focus on the individual and their family, making the most of whatever time they have left. To continue providing end-of-life care the nurses successfully protected their authentic self by using a ‘professional identity’ and employing ‘defence of self’. The nurses found the unpredictable nature of hospital end-of-life care difficult but used a collaborative power to manage situations. Conclusion: This study suggests hospital nurses successfully navigate an approach to hospital end-of-life nursing care, represented as a ‘harbour’, which facilitates transitioning from ‘stormy’ treatment to calm end-of-life care and death.

Continuing chemotherapy or using hospital services near the end of life (EOL) and delaying the approach to palliative care (PC) services are factors impairing quality of life near the EOL.Records of patients with pancreatic cancer treated at Helsinki University Hospital in 2013 and deceased by the end of 2014 were reviewed (N=221). The PC decision establishes the point when anticancer treatment is interrupted and the focus shifts to symptom-centered PC. The timing of the PC decision, referrals to specialized PC, use of hospital services at the EOL, and place of death were examined.The median overall survival was 13 months from diagnosis. The PC decision was made30 days prior to death or not at all for 44% of patients. In addition, 68% of these patients used hospital service in the last month of life compared to 32% of patients with an earlier PC decision (p0.001). A later or lacking PC decision correlated with a larger proportion of deaths in a secondary or tertiary hospital (64% vs. 36%), but the difference was not statistically significant (p=0.25).A late or lacking PC decision for patients with pancreatic cancer was found in almost half of the patients. There was a significant difference in the use of hospital services depending on the timing of the decision. An earlier PC decision might improve EOL care, since a late or lacking PC decision relates to a more abundant use of hospital services and an increased risk of hospital deaths.

For patients desiring end-of-life care in a palliative care unit, ensuring a safe and timely transfer while reducing length of stay in acute care is optimal. A chart review of 130 patients was completed on those who either died in acute care or were transferred to a palliative care unit. In all, 31% of patients died in acute care and 69% were transferred to a palliative care unit. Barriers impacting a timely transfer included disposition planning, behavioural changes requiring monitoring, imminently dying patients and those awaiting medical assistance in dying. This article makes clinical recommendations to address these barriers.

It is essential for all healthcare practitioners, including nurses, to recognise and respond to people's wishes and preferences for end of life care as part of a person-centred approach. Older people approaching the end of life are significant consumers of prescribed medicines and are at increased risk of adverse drug events. As such, prescribers and other healthcare practitioners should offer older people the opportunity to be involved in decisions about their medicines. This article focuses on older people and deprescribing in the last year of life. It provides an overview of the personalised care agenda, explores the risks and benefits of medicines among older people with advanced illness, and describes some of the most widely used deprescribing tools. The article emphasises a person-centred approach to end of life care and makes suggestions for holding discussions about deprescribing with patients and their families and/or carers.

People experiencing homelessness have poorer physical and mental health compared with the rest of the population. Mortality rates are significantly higher, yet there is a dearth in suitable places for the delivery of palliative and end-of-life (EOL) care. Homeless people are being failed by the current healthcare system. The stigma associated with being homeless negatively impacts these marginalised people, affecting care given from healthcare professionals (HCP). Services are often inflexible and have little tolerance for substance misuse. District Nurses (DN) are often experienced EOL care practitioners and well-placed to give person-centred care with a focus on collaborative decision-making. However, many homeless people die without input from DNs or specialist palliative support. It is important to understand why this is happening to address what can be done to help.

biBackground:/i/bWhen compared with White patients, racial and ethnic minorities experience greater barriers to quality end-of-life care. Each year, approximately 52,000 children die in the United States, yet little is known about the disparities in pediatric palliative care, especially when looking at psychosocial palliative care services such as those provided by child life specialists, social workers, and pediatric psychologists.biObjectives:/i/bIn an effort to consolidate and synthesize the literature on this topic for psychosocial professionals working with children and families confronting a life-threatening diagnosis, a review was conducted.biDesign:/i/bThis work was a systematic review of several academic databases that were searched from January 2000 to December 2020 for studies exploring disparities in pediatric end-of-life services and written in English.biSetting/Subjects:/i/bThis review was conducted in the United States. The search yielded 109 articles, of which 16 were included for review.biMeasurements:/i/bThree psychosocial researchers independently reviewed, critically appraised, and synthesized the results.biResults:/i/bEmerging themes from the literature (in/i = 16) include service enrollment, decision making, and communication. Results highlight a lack of research discussing psychosocial variables and the provision of psychosocial services. Despite this gap, authors were able to extract recommendations relevant to psychosocial providers from the medical-heavy literature.biConclusions:/i/bRecommendations call for more research specific to possible disparities in psychosocial care as this is vital to support families of all backgrounds who are confronting the difficulties of pediatric loss.

biBackground:/i/bEach health provider/agency in Southland, New Zealand, previously had its own forms and processes to document and communicate the planned scope of treatment; this project attempted to consolidate and streamline these variable processes into one actionable medical order that is valid in all settings.biAim:/i/bThe hypothesis was that the intervention would reduce unnecessary hospitalizations in the final year of life.biDesign:/i/bThe Clinical Order Articulating Scope of Treatment (COAST) form was a single-page medical order designed to document and communicate the resuscitation status and scope of medical treatment for adult patients believed to be in the final year of life, as evidenced by a "no" response to the Surprise Question. This three-phase initiative piloted the use of the COAST form in Southland from May 2019 to January 2020.biResults:/i/bOne hundred eighty-three patients with COAST forms consented to study participation. Sixty-one percent had a malignant primary diagnosis. The average number of emergency department (ED) presentations in the 12 months before COAST form implementation was 1.5 per person, and the average number of hospital admissions per person was 2.2. This was reduced to 0.5 and 0.5, respectively, in the 12 months following COAST implementation (ip/i = 0.00). Three patients had no ED presentations/hospital admissions in the 12 months before COAST implementation, compared with 29 following COAST implementation, and 66.7% of patients died between May 2019 and February 2021.biConclusions:/i/bPatients with a COAST form had significantly fewer ED presentations and hospital admissions in the 12 months following implementation.

lt;bgt;lt;igt;Background:lt;/igt;lt;/bgt; The Go Wish Game (GWG) is a practical tool developed to ease advance care planning (ACP) conversations regarding end-of-life (EOL) issues. The game consists of a guide and 35 cards to help persons think about their personal values and priorities in the context of care and to discuss and share those concerns with families and health care professionals (HPs).lt;bgt;lt;igt;Objectives:lt;/igt;lt;/bgt; To promote ACP conversations in the Italian context, we developed an Italian version of the GWG by linguistic translation and cultural adaptation.lt;bgt;lt;igt;Design:lt;/igt;lt;/bgt; Cross-cultural adaptation process developed by Beaton et al.lt;bgt;lt;igt;Measurements:lt;/igt;lt;/bgt; We started with a back-and-forth translation to guarantee linguistic appropriateness. A prefinal Italian version was developed and then qualitatively evaluated by two focus groups (FGs) to assess content validity and cultural appropriateness. Participants' suggestions were discussed by the research groups and included in the final Italian version.lt;bgt;lt;igt;Data analysis:lt;/igt;lt;/bgt; The FGs' transcripts were analyzed by thematic analysis.lt;bgt;lt;igt;Sample:lt;/igt;lt;/bgt; One FG included HPs potentially involved in ACP, the second FG involved representative from local patient associations (RLPAs) with chronic, degenerative, and potentially terminal disease. Participants were purposefully selected. The two FGs involved eight HPs and five RLPAs, respectively.lt;bgt;lt;igt;Results:lt;/igt;lt;/bgt; Fewer explicit statements concerning EOL choices and a broader emphasis on the role of HPs in this discussion characterized the prefinal version. Our analysis identified three themes and five subthemes: (1)lt;igt;improving translationlt;/igt;: linguistic redefinition and practical clarification; (2)lt;igt;how to play the GWGlt;/igt;: needs and suggestions; and (3)lt;igt;more than a gamelt;/igt;.lt;bgt;lt;igt;Conclusion:lt;/igt;lt;/bgt; The Italian version developed in this study presents several cultural peculiarities. The rigorous translation and cultural adaptation process applied can enrich the existing literature by spreading a practical tool for initiating ACP in other languages and cultures. Further studies are needed to evaluate this tool's effectiveness in supporting ACP and training HPs to promote the ACP process.

© 2022 American Academy of Hospice and Palliative MedicineContext: The COVID-19 pandemic has highlighted variability in intensity of care. We aimed to characterize intensity of care among hospitalized patients with COVID-19. Objectives: Examine the prevalence and predictors of admission code status, palliative care consultation, comfort-measures-only orders, and cardiopulmonary resuscitation (CPR) among patients hospitalized with COVID-19. Methods: This cross-sectional study examined data from an international registry of hospitalized patients with COVID-19. A proportional odds model evaluated predictors of more aggressive code status (i.e., Full Code) vs. less (i.e., Do Not Resuscitate, DNR). Among decedents, logistic regression was used to identify predictors of palliative care consultation, comfort measures only, and CPR at time of death. Results: We included 29,923 patients across 179 sites. Among those with admission code status documented, Full Code was selected by 90% (n = 15,273). Adjusting for site, Full Code was more likely for patients who were of Black or Asian race (ORs 1.82, 95% CIs 1.5–2.19; 1.78, 1.15–3.09 respectively, relative to White race), Hispanic ethnicity (OR 1.89, CI 1.35–2.32), and male sex (OR 1.16, CI 1.0–1.33). Of the 4951 decedents, 29% received palliative care consultation, 59% transitioned to comfort measures only, and 29% received CPR, with non-White racial and ethnic groups less likely to receive comfort measures only and more likely to receive CPR. Conclusion: In this international cohort of patients with COVID-19, Full Code was the initial code status in the majority, and more likely among patients who were Black or Asian race, Hispanic ethnicity or male. These results provide direction for future studies to improve these disparities in care.

Patient experiences should be considered by healthcare systems when implementing care practices to improve quality of end-of-life care. Families and caregivers of recent in-patient decedents may be best positioned to recommend practices for quality improvement.To identify actionable practices that bereaved families highlight as contributing to high quality end-of-life care.We conducted qualitative content analysis of narrative responses to the Bereaved Family Surveys Veterans Health Administration inpatient decedents. Out of 5964 completed surveys in 2017, 4604 (77%) contained at least one word in response to the open-ended questions. For feasibility, 1500/4604 responses were randomly selected for analysis. An additional 300 randomly selected responses were analyzed to confirm saturation.Over 23% percent (355/1500) of the initially analyzed narrative responses contained actionable practices. By synthesizing narrative responses to the BFS in a national healthcare system, we identified 98 actionable practices reported by the bereaved families that have potential for implementation in QI efforts. Specifically, we identified 67 end-of-life practices and 31 practices in patient-centered care domains of physical environment, food, staffing, coordination, technology and transportation. The 67 cluster into domains including respectful care and communication, emotional and spiritual support, death benefits, symptom management. Sorting these practices by target levels for organizational change illuminated opportunities for implementation.Narrative responses from bereaved family members can yield approaches for systematic quality improvement. These approaches can serve as a menu in diverse contexts looking for approaches to improve patient quality of death in in-patient settings.

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.

This paper reports findings from a qualitative study on the triggers of hospital social workers' moral distress at a large southern U.S. health system. Moral distress occurs when ethical conflict cannot be resolved in a way that aligns with an individual's personal and professional values and ethics. Participants indicated that moral distress derives from both individual interactions and the culture and climate of health systems. For example, participants expressed how sources of moral distress derived from client-centered decisions, such as end-of-life care and patient autonomy; interpersonal dynamics, including team or supervisory conflict; structural issues, such as insurance barriers or internal hospital policies; and organizational values, such as perceptions of institutional support and validation. Implications of this research suggest that health systems need to foster positive ethical environments that nurture clinicians' health and mental health through programs that aim to increase moral resilience, promote empowerment, and foster wellness.

As Americans live longer and with chronic conditions, the healthcare system, researchers, faculty, practicing providers, patients, and families must adapt to changing societal needs and goals.The aim of this commentary was to offer recommendations that align with the six vital directions to improve the health care and quality of life for older Americans.This article expands upon the six vital directions from an evidence-based practice (EBP) perspective that values the three legs of the EBP stool: (1) research evidence, (2) clinician expertise, and (3) patient preferences, values, and circumstances.The recommendations reflect the scientific literature, our expertise in EBP and research, our nursing roles and expertise, and our experiences in the care of our older parents. By sharing our experiences as nurse scientists and daughters, we offer insight to raise the healthcare bar for older adults through EBP and meaningful, person-centered care.Vital directions for improving the health care and quality of life for older Americans include promoting interprofessional education to create an adequately prepared workforce; researching and implementing pathways to minimize the social determinants of health for older adults; disseminating findings that remediate older adult health disparities; innovating approaches for managing chronic health conditions at home; and studying and implementing approaches for allocating resources for end-of-life care that are satisfying for the patients, their family, and clinicians.

The purpose of this text is to tell the story of the implementation of the Act Respecting End-of-Life Care, referred to hereafter as Law 2 (Gouvernement du Québec, 2014) with an emphasis on the ambiguous role of ethics in the Interdisciplinary Support Groups (ISGs), created by Quebec's Ministère de la santé et des services sociaux (MSSS). As established, ISGs provide "clinical, administrative and ethical support to health care professionals responding to a request for Medical aid in dying (MAiD)" (Gouvernement du Québec, 2015). It is suggested that their composition includes the participation of a person with an expertise in ethics. These ISGs represent an important innovation for stakeholders involved in MAiD. To date, no scientific research has specifically addressed ISGs and little research has been conducted in other jurisdictions on the roles, operations and practices of MAiD support structures, especially the implication of ethics. Several ISGs have certainly developed promising practices that could benefit all stakeholders in the wider field of ethics and end of life. We will explore the development of ISGs in Quebec as a support structure for MAiD by highlighting the role that ethics has played (and should play) in these morally and humanly challenging situations.

To explore and understand the experiences of patients with advanced illness in relation to dignity during end-of-life care in emergency departments.Qualitative study based on Gadamer's hermeneutics.Between September 2019 and February 2020, 16 in-depth interviews were carried out with advanced illness patients who attended emergency departments. The participants were informed priorly and signed informed consent. The data were analysed using an inductive strategy for finding emerging themes. The Consolidated Criteria for Reporting Qualitative Research was used for writing the study's report.In the data analysis process, two main themes emerged that glean the experiences of patients in relation to dignity during end-of-life care in emergency departments. 'Dignity as an individual's attribute' and 'Acting with dignity: Dignity as a behavioural attribute'.Patient dignity in end-of-life care is centred around the principle of control (of oneself, one's death and one's emotions). The strategies required for patients to preserve their dignity can be somewhat incompatible with the dynamics and objectives of healthcare professionals who work in emergency departments.The dignity of patients with advanced illness who attend emergency departments is a relevant issue that merits being addressed from the patients' perspective. Participants have identified that dignity is a way of being and behaving in the face of illness. Emergency departments need to respect end-of-life patients' desires by supporting and accompanying them, avoiding therapeutic obstinacy. We recommend care to be centred on patients' well-being, to respect their autonomy and decision-making processes, and to allow prompt referrals to palliative care services.Managers from the Emergency Departments participated in the study design and patients' recruitment. Patients' relatives were informed about the study's aim, and they contributed to the development of the interview protocol.

The loss of a child in a family is a painful experience. Despite this, most studies focus on the grieving experience of parents. Our understanding of sibling bereavement therefore remains underexplored. This study aims to address this gap by exploring the bereavement experience of younger bereaved siblings from the perspective of the bereaved child and the parents.This study is a qualitative study conducted in Hong Kong. We recruited eleven bereaved families from 2019 to 2020. Semi-structured interviews were conducted separately with bereaved children and parents. Thematic analyses were performed.Eleven bereaved siblings, aged 5 to 11, and their parents were interviewed. Four themes were generated: Parents' unawareness of bereaved siblings' grief, protecting parents from grief, comparison with the deceased siblings, and learning how to grieve.Our findings suggest that the family dynamics and interactions in the grieving experience are complex. The impact of grief on the bereaved child could emanate from the loss of the sibling or from the grief of the parents or from family interactions.This study highlights the importance of viewing the sibling bereavement experience in a family context and of enhancing sibling bereavement services. Helping professionals should not only provide more bereavement support to the bereaved siblings individually, but they should also enhance parents' capacity to support their bereaved children.

Background An activity to provide a tangible keepsake following the death of a loved one is termed ‘memory making’. However, limited evidence is available related to professionals' education and support to provide memory making opportunities in the adult intensive care unit (ICU). Having a greater understanding of healthcare professionals’ experiences can inform future patient/family care and support for professionals in end-of-life care. Objective The objective of this study was to describe what participants perceive memory making to be, if they have facilitated memory making activities as part of their practice, if they perceive it as part of their role, and if they have the necessary skills to do so. Methods Seventy-five registered nurses (75% response rate), 19 medical doctors (76% response rate), and two social workers (66.7% response rate) completed a survey at a single tertiary referral centre in an adult ICU. Results Participants reported memory making to include the creation of tangible keepsakes as well as nontangible activities. Overall, participants reported high agreement scores that the responsibility for initiating memory making predominately belonged to the nurse. Participants reported skills most needed involved the ability to interact with the family, being open to the concept, and integrating memory making into their standard of care. Having developed a rapport with families was considered an enabler, whereas lack of knowledge and clinical workload were reported as inhibitors to offering memory making. Conclusions Overall, participants in this study reported positive experiences with offering memory making to families during end-of-life care in the adult ICU. Nurses are more likely to perceive professional responsibility for offering memory making, likely due to their increased time at the bedside and higher prominence and leadership in other end-of-life practices. To support professionals, education should include conceptual knowledge, procedural knowledge of keepsake creations, communication techniques using reflective practices, and organisational support to facilitate time requirements.

International audience; OBJECTIVES: Comfort care for a dying patient increases the quality of the end of life. End-of-life situations are frequently managed in acute geriatric units (AGUs), and transition to comfort care only is often necessary. However, the frequency of transition to comfort care and the latter's putative link with the end-of-life trajectory (sudden death, cancer, organ failure, and frailty with or without dementia) have not previously been studied in acute geriatric units. We sought to (1) describe end-of-life trajectories and the transition to comfort care only, and (2) analyse the relationship between the two, prior to death in an AGU. DESIGN: A secondary analysis of a subgroup of the DAMAGE cohort (a prospective multicentre cohort of 3509 patients aged 75~years and over and admitted consecutively to an AGU). SETTING/PARTICIPANTS: DAMAGE patients who died in an AGU after a stay of at least 48~hours. METHODS: Data on the end-of-life trajectory and the transition to comfort care only were extracted from medical records. RESULTS: Of the 177 included patients, 123 (69.5%) transitioned to comfort care only in the AGU. A frailty trajectory (in patients living with dementia or not) accounted for nearly 70% of deaths. Paradoxically, only frailty among people living without dementia was not significantly associated with a more frequent transition to comfort care [odds ratio (95% confidence interval): 1.44 (0.44-4.76), relative to a patient dying suddenly]. CONCLUSIONS AND IMPLICATIONS: Transition to comfort care only is frequent in AGUs and is linked to the end-of-life trajectory (except for frail patients living without dementia). The frailty trajectory is one of the most frequent, and, therefore, physicians must be aware of the need to improve practice in this context.

Resumo O planejamento antecipado de cuidados é um processo de discussões entre profissionais de saúde e pacientes que permite a tomada de decisão compartilhada quanto a objetivos de cuidados de saúde, atuais e/ou futuros, com base nos desejos e valores do paciente e em questões técnicas do cuidado. É considerado fundamental na prestação de cuidados de excelência em fim de vida, permitindo que profissionais de saúde alinhem os cuidados prestados com o que é mais importante para o paciente. Apesar de seus benefícios, ainda é muito pouco realizado na prática clínica, especialmente no Brasil. Considerando a necessidade de guias práticos de planejamento antecipado de cuidados adaptados à realidade brasileira, pautados em estratégias de comunicação empática, este estudo é uma proposta de guia baseada em revisão integrativa da literatura (PubMed e SciELO), com recomendações de evidências atuais, incluindo instrumentos validados para o português (Brasil), para facilitar sua implementação na prática clínica. Abstract Advance care planning is a process of discussion between healthcare professionals and patients that enables shared decision-making on current and/or future healthcare goals, based on patients’ desires and values and technical care issues. Advance care is considered essential in the provision of quality terminal care, allowing healthcare professionals to align the care provided with what is most important to the patient. Despite its benefits, it is still underused in clinical practice, especially in Brazil. Considering the need for practical guides for advance care planning adapted to the Brazilian reality, drawing on empathetic communication strategies, this study is a guide proposal based on an integrative literature review (PubMed and SciELO), with recommendations of current evidence, including instruments validated for Portuguese (Brazil), to facilitate its implementation in clinical practice. Resumen La planificación anticipada de atención es un proceso de discusión entre los profesionales de la salud y los pacientes que permite la toma de decisiones relacionadas a los objetivos de atención médica actuales y/o futuros, basadas en los deseos y valores del paciente y en cuestiones técnicas de la atención. Resulta ser una apropiada atención terminal, ya que estos profesionales pueden adecuar la atención con los deseos del paciente. Pese a sus beneficios, es poco realizada en la práctica clínica, especialmente en Brasil. Dada la necesidad de guías prácticas para la planificación anticipada de atención, adaptadas a la realidad brasileña y basadas en estrategias comunicativas empáticas, este estudio propone una guía a partir de una revisión integradora de la literatura (PubMed y SciELO), con recomendaciones de evidencia actual, incluidos instrumentos validados para el portugués brasileño para facilitar su aplicación en la práctica clínica.

In this compelling personal narrative describing a case from the front lines of the COVID-19 pandemic, a palliative care physician harnesses the creative powers and strengths of the interdisciplinary team to provide compassionate care to a critically ill patient and his family. The author describes the process of identifying a surrogate decision maker from among the patient's many adult children-several of whom were estranged from him and each other-and facilitating weighty decisions about his end-of-life care. Over the course of this journey, the author grapples with her inner biases and struggles with the emotional trauma associated with bearing witness to extraordinary suffering and social isolation imposed by COVID-19. Not only does the ethics of care approach embodied here lead to the creation of enduring vibrant works of art for this patient and others, but it also affirms a guiding principle of palliative care in which interdisciplinary collaboration is marshalled in the service of cultivating relationships, upholding responsibilities, and intensifying empathy among persons tied together by a common narrative.

CONTEXT: Guidelines exist to direct end-of-life symptom management in COVID-19 patients. However, the real-world symptom patterns, and degree of concordance with guidelines on medication use, and palliative care involvement has received limited attention. OBJECTIVES: To describe the evolution of COVID-19 symptoms, medication used to alleviate these, and degree of palliative care involvement in the final week of life. METHODS: This retrospective study reviewed all COVID-19 inpatient deaths across five metropolitan hospitals in Australia from January 1 to December 31, 2020. Outcome measures were collected at day of death, and days one, two, five and seven before death. These were COVID-19 symptom severity (measured by the Palliative Care Outcome Scale), and use of supportive pharmacological and non-pharmacological therapies. Palliative care referral timepoint was also collected. RESULTS: Within the sample of 230 patients, commonest symptoms were breathlessness, agitation, pain, and respiratory secretions. On day of death, 79% (n = 181) experienced at least one symptom, and 30% (n = 68) experienced severe/extreme symptoms. The use of midazolam, glycopyrrolate, and infusions for symptom management occurred late, less frequently, and at lower doses than suggested in guidelines and other studies. Palliative care referrals were made late, at median three days before death (IQR 1-6 days), and for only half of people dying from COVID-19 (51%; n = 118). CONCLUSION: Symptoms peaked in final three days of life. Earlier use of in fusional and breakthrough medications should be considered in anticipation of symptoms given high likelihood of dying in discomfort. Earlier palliative care referral for high-risk patients should be considered at hospital admission.

BACKGROUND: Unlike fee-for-service Medicare, the Veterans Health Administration (VHA) allows for the provision of concurrent care, incorporating cancer treatment while in hospice. METHODS: We compared trends of aggressive care at end of life between Medicare and VHA decedents with advanced nonsmall cell lung cancer from 2006 to 2012, and the relation between regional level end-of-life care between Medicare and VHA beneficiaries. RESULTS: Among 18,371 Veterans and 25,283 Medicare beneficiaries, aggressive care at end of life decreased 15% in VHA and 4% in SEER (Surveillance, Epidemiology, and End Results)-Medicare (p

Considerations for palliative care and quality of death has significantly increased over the past 10 years in the Eastern Mediterranean Region (EMR). Recent trends in ageing and increasing chronic disease burden have drawn attention to the need to pay attention to the concept of good death and related factors from the perspective of the local population.To assess the factors related to good death in the EMR.We searched PubMed, Embase, Scopus, Web of Science, and ProQuest on 22 October 2021 for English language articles, with no time limit, using keywords "quality of death", "good death", "quality of dying", "good dying", "Middle Eastern", and countries in the Region. The quality of articles was evaluated using the Hawker criterion and based on the PRISMA guidelines. From the thematic analysis, the factors influencing good death were extracted. EndNote X8 software was used for data management.The search yielded 55 articles, and 14 were included in the study, with a total of 3589 participants. Factors related to good death were classified into 2 main categories: patient preferences and end-of-life care. The former was divided into 4 groups: symptom management, psychological support, social support, and spiritual care. The second category included 2 subcategories: death control and patient autonomy, and end-of-life care.Although patients' beliefs about good death are personal, unique, and different, perception about good death in the EMR depends on the extent to which patients' preferences are met and end-of-life care is provided. More research on good death is recommended in the context of Islamic countries in EMR, and to empower patients and their families to better manage the dying process and create educational programmes.العوامل المتعلقة "بالاحتضار في سلام" في إقليم شرق المتوسط: استعراض منهجي.آرمين فريدوني، مريم رسولي، تكتم كيانيان،مریم الهی خواه، حسين سوري، شيلان عزيزي، سلمان برسته.على مدى السنوات العشر الماضية، زاد الاهتمام بالرعاية الملطِّفة وظروف الاحتضار زيادة كبيرة في إقليم شرق المتوسط. وقد لفتت الاتجاهات الحديثة في الشيخوخة وتزايد عبء الأمراض المزمنة الانتباه إلى ضرورة الاهتمام بمفهوم "الاحتضار في سلام" والعوامل المتعلقة به من منظور السكان المحليين.هدفت هذه الدراسة الى تقييم العوامل المتعلقة "بالاحتضار في سلام" في إقليم شرق المتوسط.في يوم 22 أكتوبر/ تشرين الأول 2021 بحثنا في قواعد أبحاث: PubMed، Scopus، Web of Science ProQuest، عن مقالات باللغة الإنجليزية، بدون تحديد إطار زمني، باستخدام الكلمات المفتاحية التالية: "quality of death" (ظروف الاحتضار) أو: "good death" (الاحتضار في سلام)، أو: "quality of dying" (ظروف الاحتضار)، أو: "good dying" (الاحتضار في سلام)، أو: "Middle Eastern" (شرق أوسطي) وأسماء بلدان الإقليم. وقيَّم الباحثون المقالات باستخدام معيار هوكر، واستنادًا إلى المبادئ التوجيهية للعناصر الموصى بها لإعداد تقارير الاستعراض المنهجي والتحليلات التلوية (PRISMA). ومن خلال التحليل الموضوعي، استُخرجت العوامل التي تؤثر على “الاحتضار في سلام”. وأُديرَت البيانات ببرنامج EndNote X8.أسفر البحث بالكلمات الرئيسية عن 55 مقالة، وأدرجت 14 منها في الدراسة، ولقد بلغ مجموع المشاركين فيها 3589 مشاركًا. وصُنفت العوامل المتعلقة “بالاحتضار في سلام” إلى فئتين رئيسيتين: تفضيلات المرضى والرعاية في مرحلة الاحتضار. وبعد ذلك قُسمت الفئة الأولى إلى 4 مجموعات، هي: علاج الأعراض، والدعم النفسي، والدعم الاجتماعي، والرعاية الروحية. أما الفئة الثانية فقد اندرجت تحتها فئتان فرعيتان: التحكم في مرحلة الاحتضار واستقلالية المريض، والرعاية في مرحلة الاحتضار.على الرغم من أن اعتقادات المرضى بخصوص "الاحتضار في سلام" اعتقادات شخصية ومتفردة ومختلفة، فإن فكرة الناس في إقليم شرق المتوسط عن "الاحتضار في سلام" تعتمد على مدى تحقيق تفضيلات المرضى وتوفر الرعاية في مرحلة الاحتضار. ويُوصََى بإجراء المزيد من البحوث عن "الاحتضار في سلام" في البلدان الإسلامية في إقليم شرق المتوسط، وتمكين المرضى وأسرهم من إدارة مرحلة الاحتضار على نحو أفضل وإعداد برامج للتوعية في هذا الصدد.Facteurs liés à la bonne mort dans la Région de la Méditerranée orientale : revue systématique.Les considérations relatives aux soins palliatifs et à la qualité du décès ont considérablement augmenté au cours des 10 dernières années dans la Région de la Méditerranée orientale. Les tendances récentes du vieillissement et de l'augmentation du fardeau des maladies chroniques ont mis en évidence la nécessité de prêter attention au concept de bonne mort et aux facteurs associés du point de vue de la population locale.Évaluer les facteurs liés à la bonne mort dans la Région de la Méditerranée orientale.Le 22 octobre 2021, nous avons effectué des recherches sur PubMed, Embase, Scopus, Web of Science et ProQuest afin de trouver des articles en anglais, sans limitation de période, en utilisant les mots clés « qualité du décès », « bonne mort », « qualité du processus de la mort », « bien mourir », « Moyen-Orient » et les pays de la Région. La qualité des articles a été évaluée à l'aide des critères utilisées par Hawker et en suivant les directives PRISMA. L'analyse thématique a permis l'extraction des facteurs influençant la bonne mort. Le logiciel EndNote X8 a été utilisé pour la gestion des données.La recherche a produit 55 articles, dont 14 ont été inclus dans l'étude, avec un total de 3589 participants. Les facteurs liés à une bonne mort ont été classés en deux catégories principales : les préférences du patient et les soins de fin de vie. La première a été divisée en quatre groupes : prise en charge des symptômes, soutien psychologique, soutien social et soins spirituels. La seconde catégorie comprenait deux sous-catégories : contrôle sur la mort et autonomie du patient, ainsi que les soins de fin de vie.Bien que les croyances des patients sur la bonne mort soient personnelles, uniques et différentes, la perception de la bonne mort dans la Région de la Méditerranée orientale dépend de la mesure dans laquelle les préférences des patients sont satisfaites et les soins de fin de vie fournis. Il est recommandé de mener davantage de recherches sur la bonne mort dans le contexte des pays islamiques dans la Région de la Méditerranée orientale, ainsi que de donner aux patients et à leurs familles les moyens de mieux gérer le processus de la mort et de créer des programmes éducatifs.