Good Death and Quality of End-of-Life Care in Patients with Coexisting Cancer and Dementia: Perspective of Bereaved Families.

Background: Patients with coexisting cancer and dementia often have complex health care needs and face challenges in achieving a good death. Objectives: To evaluate good death achievement and end-of-life (EOL) care in patients with coexisting cancer and dementia from the perspective of bereaved families. Design: Cross-sectional nationwide postal survey. Setting/Subjects: Bereaved families of patients with cancer who died in hospice and palliative care units across Japan. Measurements: Bereaved families completed an anonymous, self-reported questionnaire. Their perspective on achieving a good death was assessed using the Good Death Inventory (GDI) (total score: 18-126). The Revised Care Evaluation Scale-short version (CES2) was used to assess EOL care (total score: 10-60). We examined the Brief Grief Questionnaire (BGQ) (total score: 0-10) and Patient Health Questionnaire 9 (PHQ9) (total score: 0-27). Results: Data from 670 participants were analyzed, including 83 (12.4%) bereaved families of patients with coexisting cancer and dementia. No statistical differences were observed in the total GDI score for 18 items (dementia comorbidity vs. nondementia comorbidity groups, mean ± standard deviation, respectively, 78.4 ± 17.7 vs. 80.0 ± 15.5, adjusted [adj] P = 0.186), CES2 score (49.70 ± 9.22 vs. 48.82 ± 8.40, adj P = 0.316), BGQ score (3.40 ± 2.41 vs. 4.36 ± 2.28, adj P = 0.060), and PHQ9 score (4.67 ± 4.71 vs. 5.50 ± 5.37, adj P = 0.788). Conclusions: GDI, CES2, BGQ, and PHQ9 scores did not differ significantly between groups, regardless of the presence of dementia in hospice and palliative care units. Patients with coexisting cancer and dementia can achieve a good death by high-quality EOL care.

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".

'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.

Enhancing end-of-life care quality and achieving a good death for the elderly in Japan.

BACKGROUND: In the context of an aging populations, there is an escalating need for palliative care tailored to the needs of the elderly. This study aimed to assess differences in symptoms and good death among the elderly, along with the structures and processes involved in end-of life care, and to explore the impact of age on achieving a good death. METHODS: We conducted a questionnaire survey for bereaved family members of patients with cancer, heart disease, stroke, pneumonia, and kidney failure in 2019 and 2020. The study population was categorized into the following age groups: ≤64, 65-74, 75-84, and ≥85. The outcomes included symptom intensity, achievement of a good death, and receipt of quality care. RESULTS: In total, 62,576 bereaved family members agreed to participate in the survey (response rate; 54.0 %). The weighted percentages of 'severe' and 'very severe' symptoms decreased with age. These trends were observed across age groups, even among the elderly. The strongest effect of age on achieving a good death was found for 'feeling that life is complete' with reference to those aged ≤64 years: 65-74 years (odds ratio [OR]; 2.09, 95 % CI; 1.94 to 2.25), 75-84 years (OR; 4.86, 95 % CI; 4.52 to 5.22) and ≥85 years (OR; 12.8, 95 % CI; 11.9 to 13.8). CONCLUSION: Age-specific differences were observed in quality of death, quality of care, and symptom intensity. It is important to provide individualized consideration for each age group rather than categorizing them broadly as the elderly when caring for them.

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.

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.

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.

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.

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.

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.

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.

Existential Matters and Quality of Dying: A Model of Maturation Processes.

Background: How people face mortality is a crucial matter for medicine. Yet, there is not a coherent and comprehensive understanding of how people can process the experience such that it is not traumatic. Methods: This article offers a "logic model" of how existential maturation occurs, using analogies from cell biology to explain the process. Results: This model depicts 10 mechanisms that together deal with mortality-salient events. Collectively, they are termed the existential function, which is seen as an innate, ever-evolving, integral part of the mind. An operational boundary selectively manages how realities are taken in. Processing is initiated with other essential people, ushering in reiterative steps of listening, finding, exploring, making meaning, and adjusting. The result is adaptive, integrated, mortality-acknowledging dispositions of mind. The process allows quality of life at the end of life and healthy mourning; impediments to it make for existential suffering and complicated grief. Conclusions: This conceptual model describes how people can face mortality. Its merit depends on its source in human experience, its explanatory power, its ability to guide people as they face mortality, and its ability to stimulate productive perspectives. It is therefore offered as an invitation for discussion, research, revision, and evolution.

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.

Translation and psychometric evaluation of the Persian version of "good death inventory- short Form" from the perspective of family-members of cancer patients.

INTRODUCTION: Achieving good death is among the objectives of palliative care in patients with cancer. There should be an instrument for evaluating the quality of palliative care provided by family members at the end of life. This study was done to assess the psychometric properties of good death inventory- short form according to the perspective of family of patients with cancer. METHOD: This methodological study was done in 2022 at two hospitals in Tehran. The translation was done via forward-backward method. Face validity was examined through cognitive interviewing with 10 family members. The content validation, were used by assessment the opinions of 10 palliative care specialists. The construct validity was explored through exploratory factor analysis and examination of convergent validation with care evaluation scale 2.0, as well as inspection of correlation by answering two general questions of satisfaction with treatment and end of life quality of life. The scale's reliability, internal consistency was calculated using Cronbach's alpha coefficient and stability via test-retest. RESULTS: Overall, 204 family members of patients with cancer were included. In the exploratory factor analysis, three factors of peace, hope, and value as well as quality of care were extracted with cumulative variance of 41.8%.A significant and suitable correlation between the total scores of the participants Good death inventory-short form and care evaluation scale2.0 (r = 0.459, P < 0.001) and general satisfaction with end-of-life care (r = 0.423, p < 0.001) as well as the patient's general quality of life (r = 0.539, p < 0.001). The Cronbach's alpha coefficient for the questionnaire was found 0.842, and the stability was confirmed with Intra cluster correlation coefficient = 0.851. CONCLUSION: the Persian version of good death inventory-short form is a valid and reliable questionnaire which can investigate the factors associated with good death according to patients' family members' perspective.

Overcoming the barriers to optimal end of life care in the emergency department.

The focus of care in the emergency department (ED) is on saving or sustaining life, but some patients admitted to the ED die in the ED. Nurses whose focus is on saving lives may therefore find themselves providing end of life care to patients and their families in a stressful and distressing environment. Providing optimal end of life care involves reflecting on what a good death looks like and how patients can be supported to have a good death. This article describes the barriers to optimal end of life care in the ED and prompts nurses to think about how they can enhance their practice when caring for dying patients and their families.

Palliative care practices and policies in diverse socio-cultural contexts: aims and framework of the ERC globalizing palliative care comparative ethnographic study.

Background: Palliative care as a specialist professional practice of care for people with advanced illness is becoming increasingly influential worldwide. This process is affected by global health inequalities as well as cultural dimensions of approaching death and practicing care in life-limiting illness. Objectives: The European Research Council-funded Globalizing Palliative Care (ENDofLIFE) project aims to understand how palliative care policies, discourses and practices are translated, adapted and reconstituted in diverse socio-cultural settings and how cultural dimensions of approaching death and local practices of care shape palliative care implementation. Methods and Analysis: Using a multi-scalar and multi-sited ethnographic approach, the project uses person-centered ethnography, participant observation, semi-structured interviewing, focus group discussions and policy and discourse analysis at transnational, national and local levels. Ethnographic case-studies are conducted in Brazil, India and Indonesia. Discussion: The globalizing palliative care project develops a novel ethnographic methodology of studying end-of-life care trajectories through long-term participant observation with individual patients and families as they manage and practice formal and informal health care in advanced illness. By analyzing how patients and families experience and navigate care over time, complemented by stakeholder interviews, the study advances critical theoretical insight into the relation between (large-scale and dynamically traveling) palliative care models, policies and discourses on the one hand and the experience and practice of palliative care in the lives of patients and informal care givers in local health care practices on the other hand. Insights are expected to benefit culturally situated palliative care policies and practices.

Narrating Final Memories From Spousal Loss: The Role of Place and Quality of Death.

Objective: Personal memories of the death of a spouse can guide bereavement adjustment. Place of death and quality of death are end-of-life factors that are likely to influence death experiences and formation of subsequent personal memories. The current study employs narrative content-analysis to examine how place and quality of death relate to affective sequences present in older adults' final memories from the death of their spouse. Method: Based on power analyses, 53 older adults were recruited and completed a Final Memory Interview. They also reported place of spouse's death (ie, in hospital, out of hospital) and quality of death across four subscales. Final memory narratives were reliably content-analyzed (interrater agreements >.70), revealing positive and negative affective sequences, including: redemption, contamination, positive stability, and negative stability. Findings: Experiencing the death of a spouse in hospital was related to narrating final memories with contamination. In terms of quality of death, reporting a less comforting social environment at time of death was related to the presence of redemption in final memories. Reporting that one's spouse received appropriate medical care related to narrating memories that showed positive stability. Conclusions: Final memories are carried with the bereaved long after their loss. Positive final memories appear to stem from witnessing a comfortable, medically appropriate death outside of a hospital setting. End-of-life 'that is' between care and aligned with patients' values for place and treatment may be critical for spouses' formation of constructive final memories and bereavement adjustment.

Conceptualizations of "good death" and their relationship to technology: A scoping review and discourse analysis.

Background and Aims: By the 1960s, medicine experienced technological revolutions that enabled it to control and medicalize death in many circumstances. The modern conceptualization of "good death" emerged in the late 1960s with the beginning of the hospice movement, and palliative care became an official medical specialty in 1987. This project aims to elucidate how the idea of "good death" has been discussed and perceived since then, as well as the impact of medical technologies on death. Methods: The terms "good death," "technology," and "palliative care" were searched. One hundred ninety English sources that discussed "good death" explicitly or implicitly, published between 1987 and 2020, were included in the final analysis. Texts were analyzed for discursive themes related to "good death" and technology and demographic data related to authors, geographies, types of text, and date of publication. Results: The discourse of a "good death" with the patient being in control dominated the archive. Other discourses include a good death being peaceful and comfortable, one where the patient is not alone, and one that is not prolonged. Medical technology discourses are largely negative in the setting of death. Conclusion: Findings indicate a strong critique of the medicalization of death in the literature. This also complements the dominance of discourses on patient autonomy. Medical discourses of "good death" and technology permeate discussion outside of the healthcare context, and there is an absence of spirituality and neutrality in "good death" discourses. The results of this study are relevant for ethics and communication in geriatric and palliative care.

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.

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.