'How long do you think?' Unresponsive dying patients in a specialist palliative care service: A consecutive cohort study.

BACKGROUND: Predicting length of time to death once the person is unresponsive and deemed to be dying remains uncertain. Knowing approximately how many hours or days dying loved ones have left is crucial for families and clinicians to guide decision-making and plan end-of-life care. AIM: To determine the length of time between becoming unresponsive and death, and whether age, gender, diagnosis or location-of-care predicted length of time to death. DESIGN: Retrospective cohort study. Time from allocation of an Australia-modified Karnofsky Performance Status (AKPS) 10 to death was analysed using descriptive narrative. Interval-censored survival analysis was used to determine the duration of patient's final phase of life, taking into account variation across age, gender, diagnosis and location of death. SETTING/PARTICIPANTS: A total of 786 patients, 18 years of age or over, who received specialist palliative care: as hospice in-patients, in the community and in aged care homes, between January 1st and October 31st, 2022. RESULTS: The time to death after a change to AKPS 10 is 2 days (n = 382; mean = 2.1; median = 1). Having adjusted for age, cancer, gender, the standard deviation of AKPS for the 7-day period prior to death, the likelihood of death within 2 days is 47%, with 84% of patients dying within 4 days. CONCLUSION: This study provides valuable new knowledge to support clinicians' confidence when responding to the 'how long' question and can inform decision-making at end-of-life. Further research using the AKPS could provide greater certainty for answering 'how long' questions across the illness trajectory.

Ethics and Medicolegal Aspects of Withdrawal of Treatment in Critical Care Patients without Advanced Directives in India: Who will Guard the Guardians Themselves?

The Supreme Court (SC) verdict of 2023 has been welcomed by the medical community in India by those who treat patients with terminal or advanced illnesses. The earlier verdict of the apex court in 2018 was ground-breaking in allowing for advanced directives (ADs) by patients in terms of their preferences at the end of life. However, it was an impractical and lengthy process in the Indian context. The recent verdict has simplified the process of withdrawal of life support, making it more practical. The authority to withdraw life support in dying patients is now also with the treating physician, the hospital, the primary medical board, and the secondary board. This article examines ethical issues related to the specifics of the judgment with respect to those who do not have ADs in India. The present article emphasizes the need for self-regulation, credentialing, and continuing medical education in critical care and palliative medicine. In the absence of these, who will guard the guardians? How to cite this article: Menon MR. Ethics and Medicolegal Aspects of Withdrawal of Treatment in Critical Care Patients without Advanced Directives in India: Who will Guard the Guardians Themselves? Indian J Crit Care Med 2024;28(1):15-17.

Development of the pediatric family-based dignity therapy protocol for terminally ill children (ages 7-18) and their families: A mixed-methods study.

OBJECTIVES: Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families. METHODS: A parallel mixed-methods design was used. The P-FBDT protocol was developed based on the adult DT, and meanwhile by taking children-specific dignity characteristics and Chinese family-oriented culture into consideration. The protocol was then evaluated and modified based on the quantitative and qualitative feedback from 2-round surveys of 14 pediatric oncology or pediatric palliative care experts. RESULTS: The P-FBDT involves terminally ill children and their families in meaningful interactions including a series of conversations and creative activities, which will be recorded and then edited into a document-based generativity entity. The P-FBDT protocol was recognized as highly reasonable and the P-FBDT interview guide was endorsed as important, acceptable, clear, comprehensive, and suitable to be used in pediatric palliative care practice in Chinese culture (>90%). Potential benefits, possible challenges, and practical considerations of the P-FBDT were also proposed. SIGNIFICANCE OF RESULTS: The P-FBDT was perceived to be potentially beneficial to terminally ill children and their families by engaging in a series of meaningful family interactions and creating a lasting memento to be preserved. The protocol needs to be pilot tested among terminally ill children and families for feasibility and potential efficacy in practice.

Successful Management of Terminal Delirium With Transdermal Blonanserin Patch in a Terminally Ill Cancer Patient.

Delirium is a distressing condition in terminally ill cancer patients, often treated with antipsychotics. Administering them orally, subcutaneously, or intravenously can be challenging in severely agitated patients. Transdermal antipsychotic patches offer an alternative, but their use for terminal delirium remains underexplored. We present the case of a 73-year-old man with advanced diffuse large B cell lymphoma who developed severe mixed delirium during third-line chemotherapy. Nonpharmacological interventions and oral risperidone plus intravenous haloperidol failed to improve his condition. Subsequently, a transdermal blonanserin patch was applied, resulting in the resolution of hallucinations on day 1 and agitation on day 3, allowing improved communication. The patch was easily applied daily without notable adverse events. However, he deteriorated a week later with an estimated survival of days, ultimately requiring continuous midazolam for refractory agitation. This case underscores the potential of transdermal blonanserin patches for delirium in terminally ill cancer patients, emphasizing the need for future prospective studies.

The Perspective of Cancer Patients in Palliative Care on Unmet Needs: A Qualitative Synthesis Using Meta-Ethnography.

BACKGROUND: As cancer patients approach the end of life, their needs become more complex, increasing the demand for palliative care. Advanced-stage cancer patients encounter increasing unmet psychological, physical, autonomy, and communication needs, reflecting the difference between patients' perceived requirements and the support from health care professionals. The objective of this study was to synthesize qualitative evidence on unmet needs in palliative cancer care among inpatient and outpatient adults. METHODS: We conducted a meta-ethnographic review according to Noblit and Hare's framework and the operationalized guidelines developed by Sattar. The eMERGe Reporting Guidance was followed. A literature search was conducted in Cinahl, Embase, Medline, Scopus, Web of Science, PsycINFO and Google Scholar for gray literature. For all the studies, direct quotes from the participants and authors' results were identified, coded and analyzed in NVivo 1.7.1 and extracted as I and II order constructs from which higher third-order themes originated. RESULTS: Eight studies were included. Four new themes emerged, representing areas where palliative cancer care patients expressed a need for help: the need for comprehensive, patient-centered care, the need for maintaining a sense of autonomy and dignity, the need for attentive support to patients' soul and the need for accessible and timely care. CONCLUSIONS: Palliative care patients require a secure, suffering-free end-of-life journey with informed decision-making and team support. Ensuring continuity of care, validating their suffering, and allocating sufficient time are crucial aspects of care. This involves maintaining a consistent care plan, respecting patients' emotions and experiences, and providing services tailored to individual needs.

The gift of here and now at the end of life: Mindful living and dignified dying among Asian terminally ill patients.

OBJECTIVES: In Chochinov's dignity model, living in the here and now (mindful living) is explicitly stated as a dignity-conserving practice. However, what facilitates mindful living remain unclear. This study aims to investigate the mechanisms of mindful living among Asian terminally ill patients. METHODS: This interpretative phenomenological analysis comprised patients aged 50 and above with a prognosis of less than 12 months. Fifty interview transcripts from a larger Family Dignity Intervention study conducted in Singapore were used for the analysis. RESULTS: Findings revealed 12 themes that were organized into 3 axioms of mindful living for dignified dying: (a) purposive self-awareness, (b) family-centered attention, and (c) attitudes of mortality acceptance. Through purposive self-awareness, patients introspected their lived experience with illness and anticipated death to find resilience and contentment. Patients' conscious family-centered attention revolved around their relationships, achievements, and legacy within the family, leading to a deepened sense of interconnectedness with self and beloved others at life's end. Lastly, patients adopted nonjudgmental attitudes of mortality acceptance as they made necessary arrangements in preparation for their death, allowing them to treasure every living moment and obtain a closure in life. An empirical model of mindful living for dignified dying was developed based on these emerging themes, illustrating the interweaving of intention, attention, and attitude for facilitating meaningful living in the face of mortality. SIGNIFICANCE OF RESULTS: Mindful living is a dignity-preserving practice, which helps terminally ill patients to find tranquility in each present moment despite their impending death. The identified mechanisms of mindful living lay important groundwork for a new understanding and possible directions for culture-specific, mindfulness-based, family-centered interventions suited to terminally ill patients in the Asian context.

Discrimination against the dying.

The purpose of this paper is to identify a kind of discrimination that has hitherto gone unrecognised. 'Terminalism' is discrimination against the dying, or treating the terminally ill worse than they would expect to be treated if they were not dying. I provide four examples from healthcare settings of this kind of discrimination: hospice eligibility requirements, allocation protocols for scarce medical resources, right to try laws and right to die laws. I conclude by offering some reflections on why discrimination against the dying has been hard to identify, how it differs from ageism and ableism, and its significance for end-of-life care.

Hope and illness expectations: A cross-sectional study in patients with advanced cancer.

BACKGROUND: The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients. AIM: The aim of this study was to explore whether realistic illness expectations are associated with reduced hope in people with advanced cancer. DESIGN: This is a cross-sectional secondary analysis of baseline data from a primary palliative care cluster-randomized trial CONNECT (data collected from July 2016 to October 2020). Hope was measured by Herth Hope Index. Illness expectations were measured by assessing patients' understanding of their treatment goals, life expectancy, and terminal illness acknowledgement. Multivariable regression was performed, adjusting for demographical and clinical confounders. SETTING/PARTICIPANTS: Adult patients with advanced solid cancers recruited across 17 oncology clinics. RESULTS: Data from 672 patients were included in the study, with mean age of 69.3 years (±10.2), 53.6% were female. Proportion of patients indicating realistic expectations varied based on which question was asked from 10% to 46%. Median level of hope was 39 (IQR = 36-43). Multivariate non-inferiority regression did not find any significant differences in hope between patients with more and less realistic illness expectations. CONCLUSIONS: Our results suggest that hope can be sustained while holding both realistic and unrealistic illness expectations. Communication about serious news should focus on clarifying the expectations as well as supporting people's hopes.

Nursing Support for Nausea and Vomiting in Patients With Cancer: A Scoping Review.

Nausea and vomiting are symptoms commonly experienced by patients with advanced cancer and have a wide range of causes, including pharmacological interventions. Additionally, multiple factors often simultaneously cause nausea and vomiting. These highly distressing symptoms may be directly or indirectly related to the disease and can significantly impact both the physical and psychological well-being of patients. This study aims to identify the nursing support provided to reduce nausea and vomiting experienced by patients with cancer. This study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist and Arksey and O'Malley's framework. We searched the PubMed, the Cumulative Index to Nursing and Allied Health Literature, the Cochrane Central Register of Controlled Trials in the Cochrane Library, and the Ichushi-Web of the Japan Medical Abstract Society databases for all content published from the inception of each database through July 31, 2023. A total of 4,625 scientific articles were identified after literature screening. In total, 58 articles were included for full-text review, and 10 articles were finally selected for review. The types of study designs comprised six randomized controlled trials, three prospective observational studies, and one before-after study with no controls. The types of cancers included in the articles were colorectal, breast, lung, pancreatic, gynecological, stomach, and sarcoma. The total sample size of the study population was 793 patients (range = 12-281) for intervention studies and 4,333 patients (range = 20-4,197) for observational studies. Nursing support, extracted from the 10 articles, was classified into the following six types: massage therapy, acupressure, early palliative care, psychosocial support, self-symptom monitoring, and coordinated care. The review yielded six classifications of nursing support for nausea and vomiting in cancer patients. Future research should examine the feasibility of providing nursing support for nausea and vomiting in cancer patients.

Improved Symptom Change Enhances Quality of Dying in Patients With Advanced Cancer: An East Asian Cross-Cultural Study.

BACKGROUND: Symptom burdens tend to increase for patients with cancer and their families over the disease trajectory. There is still a lack of evidence on the associations between symptom changes and the quality of dying and death. In this context, this research investigated how symptom changes influence the quality of dying and death. METHODS: This international prospective cohort study (the East Asian Collaborative Cross-Cultural Study to Elucidate the Dying Process (EASED), 2017-2019) included 22, 11, and 4 palliative care units across Japan, South Korea, and Taiwan. Eligible participants were adults (Japan and Korea, ≥18 years; Taiwan, ≥20 years) with locally advanced or metastatic cancer. Physical and psychological symptoms were assessed by physicians upon admission and within 3 days before death. Death quality was assessed using the Good Death Scale (GDS), developed in Taiwan. Univariate and multivariate regression analyses were used to identify correlations between symptom severity changes and GDS scores. RESULTS: Among 998 patients (542 [54.3%] men and 456 [45.7%] women; mean [SD] age = 70.1 [± 12.5] years), persistent dyspnea was associated with lower GDS scores when compared to stable dyspnea (ß = -0.427, 95% CI = -0.783 to -0.071). Worsened (-1.381, -1.932 to -0.831) and persistent (-1.680, -2.701 to -0.659) delirium were also significantly associated with lower GDS scores. CONCLUSIONS: Better quality of dying and death was associated with improved symptom control, especially for dyspnea and delirium. Integrating an outcome measurement for the quality of dying and death is important in the management of symptoms across the disease trajectory in a goal-concordant manner.

Pediatric Nurses' Perceived Competencies toward Palliative Care for Terminally Ill Children.

INTRODUCTION: Paediatric palliative care involves the physical, psychological, and spiritual well-being of terminally ill children and their families. Competency in palliative care centred on personal traits and attributes, key abilities to satisfy professional duty through practise, and knowledge of palliative care. OBJECTIVE: Is to identify paediatric nurses' perceived Competencies toward Palliative Care for Terminally Ill Children. METHOD: Used was a descriptive research design. The sample included 72 nurses who worked at neonatal, pediatric intensive care units ( NICU, PICU) in four hospitals affiliated to Universal Health Insurance (UHI) in Port Said City, namely ( El Nasr, El Salam, El Hayah, and pain outpatient clinic at El Tadamon) hospital. The structured questionnaire and the nursing palliative care quiz are the first tools used to evaluate sociodemographic characteristics. Data were gathered using a second tool, the Nurses' Core Competencies in Palliative Care questionnaire. RESULTS: Based on the study, 56.9% of nurses had adequate knowledge, and 47.2% of paediatric nurses agreed that they had some extendable palliative care competences.It can be summarized  that more than sighlty half of the studied sample have adequate knowledge while the rest of the studied sample have inadequate knowledge,with statistically significant relationship between nurses' overall perceived competence and overall knowledge. CONCLUSION: The relationship between nurses' overall perceived competence and overall knowledge was very statistically significant. The Recommendation study's findings highlight the urgent need of creating an evidence-based programme for competency training in palliative care, which should be available in every hospital and adhered to all paediatric nurses.

Survival Prediction of Patients Who Were Terminally Ill Using the EORTC QLQ-C15-PAL Scores and Laboratory Test Values.

Background: Prognostics for patients with cancer is especially important for the supportive care of those who are terminally ill. We previously found that symptom scores as patient-reported outcomes (PROs)-such as dyspnea and fatigue scores-some biochemical parameters, the palliative performance scale (PPS) scores, and symptom clusters were useful prognostic factors; however, the predictability of a prognosis based on these factors remains unclear. Objective: To identify appropriate three-week survival predictive factor(s), in terms of performance, in patients who were terminally ill. Design: We collected symptom scores as PROs using the Japanese version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL). Setting/Subjects: We used data from terminally ill patients with cancer who were hospitalized at the palliative care unit of the Higashisumiyoshi-Morimoto Hospital (Osaka, Japan) from June 2018 to December 2019 (n = 130), as well as additional data obtained from the same clinical study from January to March 2020 (n = 31). Measurements: To evaluate predictive performance, indices such as sensitivity, specificity, positive predictive value, negative predictive value, and overall accuracy were calculated. Results: We found that the presence of a symptom cluster showed high sensitivity but low specificity and that a higher PPS value (>30) showed high specificity but low sensitivity, suggesting that these factors could provide relevant information for survival prognosis (less than or equal to three weeks). Conclusion: Symptom clusters obtained from patients is important for effective supportive care of those who are terminally ill.

Does Hospitalist Care Enhance Palliative Care and Reduce Aggressive Treatments for Terminally Ill Patients? A Propensity Score-Matched Study.

BACKGROUND: Information on the use of palliative care and aggressive treatments for terminally ill patients who receive care from hospitalists is limited. METHODS: This three-year, retrospective, case-control study was conducted at an academic medical center in Taiwan. Among 7037 patients who died in the hospital, 41.7% had a primary diagnosis of cancer. A total of 815 deceased patients who received hospitalist care before death were compared with 3260 patients who received non-hospitalist care after matching for age, gender, catastrophic illness, and Charlson comorbidity score. Regression models with generalized estimating equations were performed. RESULTS: Patients who received hospitalist care before death, compared to those who did not, had a higher probability of palliative care consultation (odds ratio (OR) = 3.41, 95% confidence interval (CI): 2.63-4.41), and a lower probability to undergo invasive mechanical ventilation (OR = 0.13, 95% CI: 0.10-0.17), tracheostomy (OR = 0.14, 95% CI: 0.06-0.31), hemodialysis (OR = 0.70, 95% CI: 0.55-0.89), surgery (OR = 0.25, 95% CI: 0.19-0.31), and intensive care unit admission (OR = 0.11, 95% CI: 0.08-0.14). Hospitalist care was associated with reductions in length of stay (coefficient (B) = -0.54, 95% CI: -0.62--0.46) and daily medical costs. CONCLUSIONS: Hospitalist care is associated with an improved palliative consultation rate and reduced life-sustaining treatments before death.

[Development and Validation of a Dignity in Care Scale of Terminally Ill Patients for Nurses].

PURPOSE: This study aimed to develop an instrument to showcase Dignity in Care of Terminally Ill Patients for Nurses and to examine its validity and reliability. METHODS: A total of 58 preliminary items on dignity in care of terminally ill patients for nurses were selected using content validity analysis and expert opinions on 97 candidate items derived through a literature review and qualitative focus group interviews. Questionnaires were administered to 502 nurses caring for terminally ill cancer patients at hospice and palliative care institutions. The data were analyzed using item analysis, exploratory and confirmatory factor analysis, convergent and discriminant validity, and Pearson correlation for criterion validity, reliability was tested using Cronbach's alpha. RESULTS: The final instrument consisted of 25 items, with four factors identified through confirmatory factor analysis. Four factors-ethical values and moral attitudes, interaction-based communication, maintaining comfort, professional insight and competence-accounted for 61.8% of the total variance. Cronbach's α for total items was .96, and test-retest reliability of intraclass correlation coefficient was .90. CONCLUSION: Since its validity and reliability have been verified through various methods, the Dignity in Care Scale of Terminally Ill Patients for Nurses can be used for develop nursing interventions and improve dignity in care of terminally ill patients.

The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers.

BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based on the Chochinov Dignity Model. METHODS: This is a descriptive qualitative study. Participants included a total of 11 parents and 14 healthcare providers who were recruited from a tertiary children's hospital in Beijing and the Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association using purposive sampling. Thematic framework analysis was used to analyze data. RESULTS: The themes of the empirical Dignity Model were broadly supported in this study, but some themes were interpreted differently in the child population. Compared with the original model, some child-specific themes were identified including acknowledging regret, a sense of security, the company of important loved ones, realizing unfinished wishes, decent and dignified death, resolving family disputes, and fairness. CONCLUSIONS: This is the first study on Dignity Model for terminal children. Knowledge of children's dignity can promote reflection of healthcare providers and caregivers regarding the values underlying their performance in pediatric palliative care, and develop certain practical interventions to strengthen children and their families' sense of dignity at end of life.