SATISFICING DEATH: Ageing and end-of-life preparation among transgender older Americans.

A good death-a normative ideology of living and dying well that may allow an individual to gain awareness, acceptance, and preparation for death-has captured the attention of researchers, clinicians, and policymakers in recent years. Prior sociological research has uncovered nuanced perspectives of a good death, yet there has been minimal exploration into how marginalised communities reconstruct their own ideals of a good death in response to structural and institutional inequities. Utilising data from 47 in-depth interviews, I examine how transgender older adults perceive and plan for ageing and end-of-life experiences through advance care planning. My analysis reveals transgender older adults' reevaluated notions of a normatively desirable good death for themselves due to existing inequities. Consequently, they actively reconstruct a personalised ideology of death that is adequate enough to meet their end-of-life needs. I further offer the conceptualisation of SATISFICING DEATH, as a process of individuals from marginalised communities reevaluating and reconstructing their own ideologies of a good death that is adequate enough while using resourceful strategies to improve existing social conditions for themselves. These findings highlight the critical need to provide affirming end-of-life care, support, and resources to transgender communities.

Bereaved Family Caregivers Perception of Trust in Palliative Care Doctors by Patients with Terminal Cancer.

Trust is a key factor in achieving a good death. However, few studies have focused on factors that help patients with terminal cancer establish trusting relationships with their palliative care doctors. This exploratory qualitative study, conducted in Japan, was designed to identify factors related to terminal cancer patients' trust in their doctors. Semi-structured interviews were conducted with 18 caregivers and grounded theory was the research approach chosen to guide this study. The data revealed seven factors related to the trust to palliative care doctors, including caring attitude, symptom management, courteous and specific explanations, long-term involvement in the patient's care, being faced with inevitable death, good impression of the institution, and referral by a trusted doctor. These factors were categorized into three main themes: [1] palliative care doctors, [2] patients with terminal cancer, and [3] professional reputation. There is potential for improving end-of-life experiences through understanding and implementing interventions to ensure trust identified by these caregivers.

'Beyond the Reach of Palliative Care': A Qualitative Study of Patient and Public Experiences and Anticipation of Death and Dying.

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the 'good death': free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the 'good death' as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care.

Investigation of the effect of nurses' professional values on their perceptions of good death: a cross-sectional study in Türkiye.

BACKGROUND: The care of patient individuals in the good death process should be planned based on nursing values. The aim of the study is to determine nurses' perceptions of a good death and its relationship with nursing values. METHODS: The study is descriptive and cross-sectional and was completed with 210 nurses. Data were collected using the Nurse Information Form, Good Death Scale, and Revised Nursing Professional Values Scale. In the study, an attempt was made to reach nurses across Türkiye over a three-month period using the snowball sampling method without calculating the sample size beforehand. Descriptive statistics, Kruskal Wallis and Mann Whitney U test, LSD test, Spearman correlation and linear regression analyzes were used in the study. RESULTS: The nurses' Good Death Scale total mean score was 53.52 ± 7.11, and The Revised Nursing Professional Values Scale mean score was 97.77 ± 15.71. There was a moderate, positive, statistically significant relationship between the nurses' Good Death Scale total mean scores and the Revised Nursing Professional Values Scale total mean scores (r = 0.522; p < 0.001). CONCLUSIONS: Value-based educational activities may be effective in helping nurses have positive perceptions about a good death.

Qualitative study on the perception of good death in patients with end-stage cancer in oncology nurses.

OBJECTIVE: To explore the perception of good death of patients with end-stage cancer by nurses in the oncology department. METHOD: In the study we used a phenomenological approach and semi-structured interviews. A total of 11 nurses from the oncology department of a Grade A hospital in Taizhou were interviewed on the cognition of good death from July 1 to September 30, 2022. Colaizzi's analysis method was used to analyse the interview data. This study followed the consolidated criteria for reporting qualitative research (COREQ). RESULT: Four themes were identified: a strong sense of responsibility and mission; To sustain hope and faith; The important role of family members; Improve patients' quality of life. CONCLUSION: The nurses in the department of oncology have a low level of knowledge about the "good death", and the correct understanding and view of the "good death" is the premise of the realization of " good death". The ability of nursing staff to improve the "good death", attention, and meet the needs and wishes of individuals and families, is the guarantee of the realization of "good death".

Psychological symptom burden associated with malignant wounds: Secondary analysis of a prospective cohort study.

OBJECTIVES: Patients with malignant wounds suffer from physical and psychological symptom burden. Despite psychological support being required, the impact of malignant wounds on patients' psychological distress is poorly investigated. We evaluated psychological distress associated with malignant wounds for patients at their end of life. METHODS: This study used the secondary analysis of the results of a large prospective cohort study, which investigated the dying process among patients with advanced cancer in 23 palliative care units in Japan. The primary outcome of this study was the prevalence of moderate to severe psychological symptom burden, evaluated by the Integrated Palliative Care Outcome Scale (IPOS)-feeling at peace scores of 2-4. In addition, the factors affecting psychological symptoms were investigated. The quality of death was also evaluated upon death using the Good Death Scale score. RESULTS: Out of the total 1896 patients, 156 had malignant wounds (8.2%). Malignant wounds were more common in female and young people. The breast, head, and neck were the most prevalent primary sites. More patients with malignant wounds had IPOS-feeling at peace scores of 2-4 than patients without malignant wounds (41.0% vs. 31.3%, p = 0.024). Furthermore, psychological distress was associated with moderate to severe IPOS-pain and the frequency of dressing changes. The presence of malignant wounds did not affect the quality of death. SIGNIFICANCE OF RESULTS: This study showed increased psychological distress due to malignant wounds. Patients with malignant wounds require psychological support in addition to the treatment of physical symptoms for maintaining their quality of life.

Contributing Factors of a Good Death for Children With Cancer From Bereaved Parents' Perspectives in South Korea.

Achieving a good-quality death for children with cancer is as paramount as saving their life, given its implications for both the children's end-of-life quality and the grief journey of their parents. This study explored factors contributing to a good death for children with cancer, as perceived by bereaved parents in South Korea. A retrospective survey was conducted, involving 58 bereaved parents of a child who died of cancer. t-tests and regressions were performed to identify factors related to deceased children associated with parents' reports of a good death for children with cancer. The results revealed significant correlations between parents' age, income, religious affiliation, time elapsed since death, child's age at death, and cancer recurrence with several aspects of a good death. These findings underscore the importance of assessing characteristics of both parents and their children to enhance the quality of death experienced by children with cancer in South Korea.

Perception of Good Death and Level of Perceived Stress in Relatives of Palliative Care Patients.

This study aimed to examine the perception of a good death and the level of perceived stress in relatives of palliative care patients. Relatives of 110 patients hospitalized in a palliative care center constituted the research sample. A personal information form, the "Good Death Scale," and the "Perceived Stress Scale" were used for data collection. The patients' relatives defined good death as being with family members and living this process without suffering. The mean total Good Death Scale score of the relatives of palliative care patients was 54.86 ± 7.78, and their mean total Perceived Stress Scale score was 31.11 ± 10.10. These findings showed that patients' relatives had high perceptions of good death and that their stress levels were above average. To expand the scope of nursing care, it is important to know how patients' relatives are affected by this process. It is recommended that more studies be conducted on this subject.

Semiotics of ICU Physicians' Views on End-of-life Care and Quality of Dying in a Critical Care Setting: A Qualitative Study.

Background and aim: While intensive care unit (ICU) mortality rates in India are higher when compared to countries with more resources, fewer patients with clinically futile conditions are subjected to limitation of life-sustaining treatments or given access to palliative care. Although a few surveys and audits have been conducted exploring this phenomenon, the qualitative perspectives of ICU physicians regarding end-of-life care (EOLC) and the quality of dying are yet to be explored. Methods: There are 22 eligible consultant-level ICU physicians working in multidisciplinary ICUs were purposively recruited and interviewed. The study data was analyzed using reflexive thematic analysis (RTA) with a critical realist perspective, and the study findings were interpreted using the lens of the semiotic theory that facilitated the development of themes. Results: About four themes were generated. Intensive care unit physicians perceived the quality of dying as respecting patients' and families' choices, fulfilling their needs, providing continued care beyond death, and ensuring family satisfaction. To achieve this, the EOLC process must encompass timely decision-making, communication, treatment guidelines, visitation rights, and trust-building. The contextual challenges were legal concerns, decision-making complexities, cost-related issues, and managing expectations. To improve care, ICU physicians suggested amplifying patient and family voices, building therapeutic relationships, mitigating conflicts, enhancing palliative care services, and training ICU providers in EOLC. Conclusion: Effective management of critically ill patients with life-limiting illnesses in ICUs requires a holistic approach that considers the complex interplay between the EOLC process, its desired outcome, the quality of dying, care context, and the process of meaning-making by ICU physicians. How to cite this article: Iyer S, Sonawane RN, Shah J, Salins N. Semiotics of ICU Physicians' Views on End-of-life Care and Quality of Dying in a Critical Care Setting: A Qualitative Study. Indian J Crit Care Med 2024;28(5):424-435.

The Health Service Model for Promoting Good Death in Critically Ill End-of-Life Patients in the Emergency Department: A Qualitative Study.

Good death is one of the important outcomes of end-of-life care service delivery. The initial management of critically ill patients in the Emergency Department (ED) for promoting good death often challenging since it requires a focus on human dignity and equity at the end of life. A qualitative approach was used included eight bereaved family members who loss of their loved one in the ED and 25 emergency staff, including 11 emergency physicians and 14 emergency nurses of a super tertiary hospital in Thailand. Semi-structured, face-to-face interviews were conducted from February to August 2021. All the interviews were transcribed verbatim for content analysis. The result identified four distinct scenarios and seven core themes of end-of-life patient characteristics in the ED. To promote a good death in the ED, health care provider should consider the unique service deliver for each critically end-of-life patients and their family members.

Good death for people living with dementia: a qualitative study.

BACKGROUND: Ensuring a good death is one of the primary objectives of palliative care and end-of-life care. There is insufficient evidence regarding what defines a good death for people living with dementia. Obtaining an understanding of what constitutes a good death could help improve dementia care. This study aimed to explore how multiple stakeholders perceive a good death for people living with dementia. METHODS: This qualitative study was carried out across six prefectures in Japan. Enrollment of participants took place within dementia outpatient clinics, hospitals, daycare centers, and community centers. A total of thirty-three in-depth interviews with people living with dementia, physicians, and nurses were conducted. Six focus group discussions were performed with family caregivers and care workers. Verbatim transcripts of the interviews were prepared, and inductive content analysis was used to examine the data. FINDINGS: Regarding the perception of a good death, the following themes were derived: (1) painless death; (2) dying in a preferred environment; (3) family's coping with loss; (4) maintaining regular life; (5) living with respect; and (6) preparation for death. All these themes are interrelated. Participants viewed a good death as a process rather than a single event. CONCLUSION: This study identifies crucial components of a good death for people living with dementia. The findings could be used to improve dementia care.

Good death disrupted: Nurses' moral emotions navigating clinical and public health ethics during the first wave of COVID-19 pandemic.

AIM: To explore the moral emotions that frontline nurses navigated in endeavouring to ensure a 'good death' for hospital patients and care home residents during the first wave of the COVID-19 pandemic. BACKGROUND: Under normal circumstances, frontline staff are focused on clinical ethics, which foreground what is best for individuals and families. Public health crises such as a pandemic require staff to adapt rapidly to focus on what benefits communities, at times compromising individual well-being and autonomy. Visitor restrictions when people were dying provided vivid exemplars of this ethical shift and the moral emotions nurses encountered with the requirement to implement this change. METHODS: Twenty-nine interviews were conducted with nurses in direct clinical care roles. Data were analysed thematically informed by the theoretical concepts of a good death and moral emotions. RESULTS: The data set highlighted that moral emotions such as sympathy, empathy, distress and guilt were integral to the decisions participants described in striving for a good palliative experience. Four themes were identified in the data analysis: nurses as gatekeepers; ethical tensions and rule bending; nurses as proxy family members; separation and sacrifice. CONCLUSIONS: Participants reflected on morally compromising situations and highlighted agency through emotionally satisfying workarounds and collegial deliberations that enabled them to believe that they were party to painful but morally justifiable decisions. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: Nurses are required to implement national policy changes that may disrupt notions of best practice and therefore be experienced as a moral wrong. In navigating the moral emotions accompanying this shift, nurses benefit from compassionate leadership and ethics education to support team cohesion enabling nurses to prevail. PUBLIC CONTRIBUTION: Twenty-nine frontline registered nurses participated in the qualitative interviews that inform this study. REPORTING METHOD: The study adhered to the Consolidated Criteria for Reporting Qualitative Research checklist.

Opinions of Cancer Patients, Their Relatives, and Nurses on Good Death.

The study sample consists of participants as the patient, patient relatives, and nurse. In our study, a significant relationship was found between the ages of patients, and fear of death, avoidance of death, accepting approach, non-acceptance, and the DAP-R scale total score. A positive moderate correlation was found between the fear of death and death avoidance among my nurses who participated in the study. The nurse, the patient, and patient relatives had a good perception of death and had a higher attitude toward death. Additionally, that found to nurses' fear of death and death avoidance behavior are higher than patients and their relatives.

Student Nurses' Perception of Good Death and Religious Coping Styles.

This research aims to examine the perception of the good death and religious coping styles of student nurses. The research is a correlational descriptive study. The research was conducted with 358 nursing students at a state university in the east of Turkey. It was found in the study that students had a good perception of death (58.83 ± 6.12) and mostly used positive religious coping styles (positive/24.55 ± 3.71, negative/13.31 ± 4.21). As a result of the correlation analysis, a weakly significant positive relationship was determined between good death perception and positive religious coping (p < .001).This study observed that students' perceptions of good death increased along with their positive religious coping styles.

Nobody Should Die Alone. Loneliness and a Dignified Death During the COVID-19 Pandemic.

During the direst months of the COVID-19 pandemic, thousands of people died alone. This study analyzes these deaths, which occurred without the presence of loved ones, and seeks to a) examine the significance for relatives, as well as professionals, of dying alone, b) determine if these solitary deaths can be considered dignified, or good deaths, and c) evaluate if the treatment of the cadavers and the funeral rites transpired with the desired dignity and sensitivity. The study was carried out in the autonomous community of Madrid using a qualitative, phenomenological, and interpretative approach through in-depth interviews of 49 informants, professionals and relatives. Interviews were conducted between July and November of 2020, followed by an interpretive, categorical, qualitative analysis. Among the key findings are that during the most critical months, deaths lacked the desired dignity, even though the involved professionals did their best to accompany and dignify the deaths.

What Constitutes a "Good Death"?-A Representative Cross-Sectional Survey Among the General Public in Croatia.

Understanding the attitudes of a particular society on a "good death" is important when it comes to end-of-life decision-making and palliative care. In the Republic of Croatia no systematic research has been done on the attitudes of the general population about the concept of a "good death". This cross sectional survey was conducted on a three-stage random sample, stratified by regions, counties and locations within those counties (N = 1203) during November and December, 2019. ANOVA, to determine differences, factor analysis and multiple regression analysis were used. The most important characteristics of a good death outlined by the respondents were: the absence of pain, the presence and unencumberedness of family and loved ones, the importance of a sense of fulfilment and meaning in life in this regard, reconciliation with God, the presence of awareness and sobriety, and the possibility of treatment.

The Concept of a Good Death from the Perspectives of Nurses Caring for Patients Diagnosed with COVID-19 in Intensive Care Unit.

We have witnessed increasing numbers of cases of COVID-19 and associated deaths worldwide. Therefore, the purpose of this descriptive and cross-sectional study was to determine the perception of a good death and the factors contributing to it by nurses caring for patients diagnosed with COVID-19 in the intensive care unit (ICU). It was carried out with nurses caring for patients diagnosed with COVID-19 in the ICU (n = 369). Data were collected using a questionnaire and the Good Death Scale. The mean score of the participants scale was 56.84 ± 7.51. In this study, nurses have seen as important statements that include "ensuring a peaceful death", "being with their loved ones", "meeting a person's spiritual needs", and "having an opportunity to say goodbye" for the good death. The factors contributing to the perception of a good death were gender, marital status, and feeling sad when caring for a dying patient (p < .05).

Bibliometric and Visualized Analysis of Good Death Research from 2001-2021.

Quantitative analysis via bibliometric field analyses is a recent, gradually emerging method. We conducted a bibliometric study to investigate the authors' scientific influence and contributions and evaluate trends and research foci in good death-related literature using the Web of Science (WOS) Core Collection. A total of 1,157 publications were selected for the analysis. There was a significant increase in annual publications per year (R2 = 0.79). The publication (317, 27.4%) and average citation (29.2) numbers were highest in the USA. Controlling for population number and GDP, the Netherlands had the highest number of articles per million persons (5.89) and US$ 1010 GDP (1.02). North American and Western European countries are leaders in the field, but some East Asian countries (Japan and Taiwan) perform well. Current research focuses on patient perspectives of good death and advance care planning among patients, families, and health care providers.

Factors associated with good death of patients with advanced cancer: a prospective study in Japan.

PURPOSE: It is important for palliative care providers to identify what factors are associated with a "good death" for patients with advanced cancer. We aimed to identify factors associated with a "good death" evaluated by the Good Death Scale (GDS) score among inpatients with advanced cancer in palliative care units (PCUs) in Japan. METHODS: The study is a sub-analysis of a multicenter prospective cohort study conducted in Japan. All variables were recorded on a structured data collecting sheet designed for the study. We classified each patient into better GDS group or worse GDS group, and examined factors associated with better GDS using multivariate analysis. RESULTS: Between January and December 2017, 1896 patients were enrolled across 22 PCUs in Japan. Among them, a total of 1157 patients were evaluated. Five variables were significantly associated with a better GDS score in multivariate analysis: preferred place of death at PCU (odds ratio [OR] 2.85; 95% confidence interval [CI] 1.72-4.71; p < 0.01), longer survival time (OR 1.02; 95% CI 1.00-1.03; p < 0.01), not sudden death (OR 1.96; 95% CI 1.27-3.04; p < 0.01), better spiritual well-being in the last 3 days in life (OR 0.53; 95% CI 0.42-0.68; p < 0.01), and better communication between patient and family (OR 0.81; 95% CI 0.66-0.98; p = 0.03). CONCLUSIONS: We identified factors associated with a "good death" using GDS among advanced cancer patients in Japanese PCUs. Recognition of factors associated with GDS could help to improve the quality of end-of-life care.

Cultural implications for disclosure of diagnosis and prognosis toward terminally ill cancer patients in China: A literature review.

OBJECTIVE: Health professionals in China tend to avoid open communication with terminally ill cancer patients concerning their diagnosis and prognosis. This review aims to explore Chinese cultural beliefs and attitudes concerning disclosure and death among health professionals and cancer patients in China and to investigate preferences of terminally ill cancer patients for a "good death." METHOD: A narrative literature review was conducted in May 2020 on MEDLINE, EMBASE, and WEB OF SCIENCE to include all studies with clear study design which presented its own study data or referred to data within underlying studies, published between January 2000 and May 2020, having cancer patients and/or healthcare professionals as participants, conducted in Mainland China, Hong Kong, or Taiwan and containing relevant data concerning "medical disclosure" or "good death." Quality assessment of publications was conducted using the NIH and CASP checklists. RESULTS: Primary database search revealed a total of 108 papers of which 9 were ultimately included. The additional hand search led to the inclusion of eight further papers. In total, there were 11 quantitative studies, 4 qualitative studies and 2 literature reviews included in this review. Our findings indicated that most terminally ill cancer patients in China want to know the truth about their diagnosis and prognosis and preferred to be informed by their doctors. Terminally ill cancer patients valued a good relationship with family and medical staff as well as being respected as an individual and wanted to be able to prepare for death. SIGNIFICANCE OF RESULTS: Terminally ill cancer patients in China often have a substantial need for information about their condition while their preferences are widely consistent with those in Western societies. Training for health professionals needs to focus on communication skills in order to overcome barriers in patient interaction.