Caregiver coping mediates the relationship between caregivers' understanding of dementia as terminal and their distress.

We assessed which coping strategies (problem-focused, emotion-focused, dysfunctional) mediate the association between caregivers' understanding of dementia as terminal and their distress. A total of 215 caregivers of community-dwelling persons with severe dementia were surveyed every 4 months over 3 years. A generalized structural equation model was used to test mediation. Caregivers who correctly understood dementia as terminal and those unsure (vs incorrect), experienced more distress (correct: ß [95% confidence interval (CI)]: 0.80 [0.00 to 1.60]; unsure: 0.95 [0.04 to 1.87]). Caregivers with correct understanding of dementia as terminal (vs incorrect) employed more dysfunctional (2.01 [0.60 to 3.42]) and problem-focused coping strategies (2.56 [0.08 to 5.05]). Although dysfunctional and problem-focused coping (associated with higher distress) mediated the positive association between caregivers' understanding that dementia is terminal and their distress, emotion-focused coping (associated with lower distress) did not offset this relationship. Results suggest that terminal illness disclosure to caregivers should be accompanied by interventions to promote emotion-focused coping strategies. Highlights Caregivers who understood dementia as terminal experienced more distress. Dysfunctional and problem-focused coping mediated the positive relationship between terminal illness understanding and caregiver distress. Emotion-focused coping did not offset this relationship.

Investigating spiritual care perceptions and religious coping methods among the relatives of terminally ill patients during the COVID-19 pandemic: the case of Turkey.

BACKGROUND: The COVID-19 pandemic in Turkey and around the world has had a profound impact on the families of terminally ill patients. In this challenging period, investigating the spiritual care perceptions and religious coping methods of patients' relatives is an essential step towards understanding the experiences in this process with the additional challenges brought by the pandemic and developing appropriate support services. This study aims to determine the spiritual care perceptions and the use of religious coping methods among the relatives of terminally ill patients in Turkey during the COVID-19 pandemic. METHODS: The sample of this descriptive and correlational study consisted of the relatives of terminally ill patients (n = 147) who were receiving treatment in the Anesthesiology and Reanimation Intensive Care Unit of a state hospital in Turkey. Spirituality and Spiritual Care Rating Scale and the Religious Coping Scale to them using face-to-face interviews. Mann-Whitney U test, Kruskal-Wallis test, and Spearman's correlation analysis were used to analyze the data. RESULTS: The mean age of the participants was 38.84 ± 11.19 years. Also, 63.3% of them were employed. The participant's total score on the Spirituality and Spiritual Care Rating Scale was 57.16 ± 6.41, and it was determined that the participants' level of perception of spirituality and spiritual care concepts was close to good. When the Religious Coping Scale scores of the participants were examined, it was found that both Positive Religious Coping levels (23.11 ± 2.34) and Negative Religious Coping levels (9.48 ± 1.47) were close to high. There was no correlation between the scores of RCOPE and SSCRS (p > 0.05). CONCLUSION: As a result, it was determined that the level of perception of spirituality and spiritual care concepts of the relatives of terminally ill patients during the COVID-19 pandemic was close to sound, and their Positive Religious Coping levels were high. Epidemics are a reality of the world, and it is essential to learn lessons from this process and take precautions for the future. We offer a perspective to realize the coping power of religion and spirituality, which are integral parts of life. The needs of terminally ill patients' relatives, a sensitive group, become visible.

'I secretly wish. . .' Caregivers' expression of wish for death of persons with severe dementia.

BACKGROUND: Qualitative evidence suggests that caregivers may express a wish for death of persons with severe dementia (PwSD). No study has assessed the extent to which it happens, stability of this wish over time and the factors associated with it. OBJECTIVES: We examined caregivers' wish for death of PwSDs overtime and the factors associated with this wish. METHODS: 215 caregivers of community dwelling PwSDs were surveyed every 4 months for 2 years. Using the mixed-effects multinomial regression model, we assessed the PwSD and caregiver factors associated with caregivers' wish for PwSDs' death. RESULTS: At baseline, 27% caregivers expressed a wish for PwSDs' life to end sooner. Overall, 43% of the caregivers expressed a wish for PwSDs' death at least once during the study period and 11% expressed it consistently. Caregivers' perception of PwSDs' lower quality of life (RRR: 1.05, 95% CI: 1.00, 1.10), higher functional dependency (RRR: 1.1, 95% CI: 1.01, 1.21), eating difficulty (RRR: 2.25, 95% CI: 1.26, 4.04) and suffering (RRR: 1.92, 95% CI: 1.05, 3.52) were associated with this wish. Caregivers who were emotionally close to PwSDs were less likely (RRR: 0.25, 95% CI: 0.11, 0.55) while those who understood that dementia is a terminal illness were more likely (RRR: 2.01, 95% CI: 1.03, 3.92) to express this wish. CONCLUSION: Caregivers' wish for PwSDs' death changed over time and was primarily driven by their perception of PwSDs' poor well-being and awareness of their illness being terminal, indicating a need for increased support in this challenging caregiving context.

A Novel Objective Measure for Terminal Delirium: Activity Scores Measured by a Sheet-Type Sensor.

CONTEXT: Delirium is a significant concern in end-of-life care. Continuous monitoring of agitation levels using objective methods may have advantages over existing measurement scales. OBJECTIVES: To examine whether an objective measure of activity scores measured using a sheet-type non-wearable sensor (Nemuri SCAN [NSCAN]) was correlated with agitation levels measured using the modified Richmond Agitation-Sedation Scale (RASS) in terminally ill patients with cancer. METHODS: We conducted a single-center, prospective, observational study in a palliative care unit using the NSCAN to measure activity scores and the RASS to assess agitation levels. RASS scores were prospectively measured by ward nurses blinded to the NSCAN variables. A database was created to pair the RASS scores and activity scores at night on the same day. RESULTS: During the observation period, 1209 patients were hospitalized, and 3028 pairs of assessments of 971 patients were analyzed. The NSCAN activity scores significantly increased with increasing RASS scores (Jonckheere-Terpstra test, p < 0.001). The mean values of the activity scores for each RASS score were RASS -5, 28.9; RASS -4, 36.4; RASS -3, 41.7; RASS -2, 57.4; RASS -1, 58.8; RASS 0, 62.6; RASS 1, 79.6; RASS 2, 106.5; and RASS 3, 118.7. CONCLUSION: The NSCAN activity significantly correlated with modified RASS agitation scores. Real-time NSCAN data on agitation may aid timely interventions for optimal symptom control. To improve outcomes for patients suffering from terminal delirium, more research on monitoring tools is warranted.

Effect of MDMA-assisted therapy on mood and anxiety symptoms in advanced-stage cancer (EMMAC): study protocol for a double-blind, randomised controlled trial.

BACKGROUND: Symptoms of anxiety and depression are common in patients with terminal illness and multiple challenges exist with timely and effective care in this population. Several centres have reported that one dose of the serotonergic psychedelic psilocybin, combined with therapeutic support, improves these symptoms for up to 6 months in this patient group. Drawing upon related therapeutic mechanisms, 3,4-methylenedioxymethamphetamine (MDMA)-assisted therapy may have the potential to achieve similar, positive mental health outcomes in this group. Preliminary evidence also supports the tolerability of MDMA-assisted therapy for anxiety and depression in advanced-stage cancer. METHODS: Up to 32 participants with advanced-stage cancer and associated depression and anxiety will be randomised in a 1:1 ratio into one of two blinded parallel treatment arms. The intervention group will receive 120 mg (+ 60 mg optional supplemental dose) MDMA-assisted therapy. The psychoactive control group will receive 20 mg oral (+ 10 mg optional supplemental dose) methylphenidate-assisted therapy. For each medication-assisted therapy session, participants will undergo two 90-min therapeutic support sessions in the week preceding, and one 90-min support session the day after the experimental session. A battery of measures (mood, anxiety, quality of life, mystical experience, spiritual wellbeing, attitudes towards death, personality traits, holistic health and wellbeing, connectedness, demoralisation, expectations, qualitative data and safety measures) will be assessed at baseline and through to the end of the protocol. Participants will be followed up until either 12 months post-randomisation or death, whichever occurs first. DISCUSSION: This study will examine the effect of MDMA-assisted therapy on symptoms of anxiety and depression in advanced-stage cancer. Potential therapeutic implications include establishing the safety and effectiveness of a novel treatment that may relieve mental suffering in patients with life-threatening illness. TRIAL REGISTRATION: Trial registered on Australian New Zealand Clinical Trials Registry. REGISTRATION NUMBER: ACTRN12619001334190p. Date registered: 30/09/2019. URL: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378153&showOriginal=true&isReview=true.

Frequency of Myoclonus and its Countermeasures in Terminally Ill Patients with Cancer: A Single-Center Retrospective Study.

Myoclonus is a relatively rare involuntary movement that is often observed in palliative care settings and that can cause patient distress. The purpose of this study is to investigate the occurrence of myoclonus and countermeasures against it in terminally ill patients with cancer diagnosed by palliative care specialists at Komaki City Hospital, Japan. We retrospectively reviewed patients with terminal cancer who received palliative care consultations between January 2018 and May 2019 and who were diagnosed with myoclonus by palliative care specialists, using electronic medical records. Patient demographics, time from onset of myoclonus to death, daily opioid use, countermeasures, and outcome of myoclonus were assessed. Of 360 patients examined during this period, 45 (12.5%) were diagnosed with myoclonus. Median age was 71 (range, 43-88) years; median time from onset of myoclonus to death was 8 days (range, 0-56); opioid usage was present in 39 patients (morphine, oxycodone, and fentanyl: n = 6, 21, and 12, respectively); and median oral morphine equivalent at onset of myoclonus was 60 mg (range, 12-336 mg). Myoclonus treatment was administered to 21 patients (opioid dose reduction, opioid switching, and others: n = 14, 3, and 4, respectively). Myoclonus is a common complication in patients with terminal cancer.

Making end-of-life health disparities in the U.S. visible through family bereavement narratives.

Objective: End-of-life experiences can have important implications for the meaning-making and communication of bereaved family members, particularly due to (in)access to formal healthcare services (i.e., palliative care and hospice). Grounded in Communicated Narrative Sense-Making theory, this study extends knowledge about how the stories told about end-of-life by bereaved family members affect and reflect their sense-making, well-being and importantly, potential disparities in end-of-life care. Methods: Semi-structured interviews with 25 bereaved individuals were conducted regarding their experiences with the terminal illness and death of an immediate family member. Using a framework of family bereavement narratives, a cross-case data analysis demonstrated qualitative patterns between (in)access to end-of-life care and how participants framed bereavement stories. Results: Four themes illustrated the continuum of communication that families engaged in when making sense of end-of-life experiences, including reflections on silence, tempered frustrations, comfort with care, and support from beyond. Innovation: This innovative qualitative connection between family members' bereavement stories and end-of-life care emphasizes the importance of employing a health equity lens within hospice and palliative care, especially in addressing the important aim of comprehensively supporting families even when illness ends. This study demonstrates that access to, quality of, and imagining beyond current structures for EOL may be vital factors for facilitating effective sense-making for the dying and their family systems. Conclusion: These findings illustrate the potential interconnections between (in)access to end-of-life care, sense-making, and communication for individuals and families experiencing terminal illness and bereavement.

What helps or hinders effective end-of-life care in adult intensive care units in Middle Eastern countries? A systematic review.

BACKGROUND: As many patients are spending their last days in critical care units, it is essential that they receive appropriate end-of -life care. However, cultural differences, ethical dilemmas and preference practices can arise in the intensive care settings during the end of life. Limiting therapy for dying patients in intensive care is a new concept with no legal definition and therefore there may be confusion in interpreting the terms 'no resuscitation' and 'comfort care' among physicians in Middle East. Therefore, the research question is 'What helps or hinders effective end-of-life care in adult intensive care units in Middle Eastern countries?' METHODS: The authors conducted a comprehensive systematic literature review using five electronic databases. We identified primary studies from Medline, Embase, CINAHL, Psycinfo and Scopus. The team assessed the full-text papers included in the review for quality using the Joanna Briggs Institute checklist (JBI). We completed the literature search on the first of April 2022 and was not limited to a specific period. RESULTS: We identified and included nine relevant studies in the review. We identified five main themes as end-of-life care challenges and/or facilitators: organisational structure and management, (mis)understanding of end-of-life care, spirituality and religious practices for the dying, communication about end-of-life care, and the impact of the ICU environment. CONCLUSIONS: This review has reported challenges and facilitators to providing end-of-life care in ICU and made initial recommendations for improving practice. These are certainly not unique to the Middle East but can be found throughout the international literature. However, the cultural context of Middle East and North Africa countries gives these areas of practice special challenges and opportunities. Further observational research is recommended to confirm or modify the results of this review, and with a view to developing and evaluating comprehensive interventions to promote end-of-life care in ICUs in the Middle East.

Advance care planning before and during COVID-19: evaluation of 73,675 patients' records.

BACKGROUND: Advance care planning (ACP) was encouraged by policymakers throughout the COVID-19 pandemic. Little is known about use of ACP during this time. AIM: To compare use of ACP before and during the COVID-19 pandemic. DESIGN & SETTING: Retrospective, observational cohort study, comparing the creation, use and content of Electronic Palliative Care Co-ordination System records in London. Individuals aged 18+ with a Coordinate My Care Record, created and published in the pre-pandemic period (01/01/2018-31/12/2019), Wave1 (W1) (20/03/2020-04/07/2020), and Wave2 (W2) (01/10/2020-05/03/2021). METHOD: Patient demographics and components of ACP were compared using descriptive and comparative statistics. RESULTS: 73,675 records were included; 35,108 pre-pandemic, 21,235 W1, 9,925 W2. Most records were created in primary care (56% pre-COVID, 76% in W1 and 48% in W2).Compared to the pre-pandemic period, the average weekly number of records created increased by 297% W1 (P<0.005) and 29.1% W2 (P<0.005). Patients with records created during the pandemic were younger (61% aged 80+ W1, 59% W2, 65% pre-pandemic (P<0.005)). Patients with records created in W1 had longer estimated prognoses at record creation (73% had an estimated prognosis of 1 year+ W1 vs 53% pre-pandemic (P<0.005)) and were more likely to be "For Resuscitation" (38% W1 vs 30% pre-pandemic (P<0.005)). CONCLUSION: During the COVID-19 pandemic, increased ACP activity was observed, especially in primary care, and for younger people and those not imminently dying. Further research is needed to identify training and planning requirements as well as organisational and system changes to support sustained high-quality ACP within primary care.

Assisted Suicide and Slippery Slopes: Reflections on Oregon.

Slippery slope argumentation features prominently in debates over assisted suicide. The jurisdiction of Oregon features prominently too, especially as regards parliamentary scrutiny of assisted suicide proposals. This paper examines Oregon's public data (including certain official pronouncements) on assisted suicide in light of the two basic versions of the slippery slope argument, the empirical and moral-logical versions. Oregon's data evidences some normatively interesting shifts in its assisted suicide practice which in turn prompts consideration of two elements of moral-logical slippage that are not widely discussed. One is slippage from an initial autonomy-based public justification for assisted suicide which does not include burden-based concerns within its operative account of voluntariness to an evolved public justification that does. The other is an expansion of a terminal illness ground to include chronic illnesses effectively rendered terminal via a refusal of treatment.

Survey of NCI-Designated Cancer Centers on the Utilization of Palliative Care in Pancreatic Cancer Patients.

Recognized as one of the deadliest cancers, pancreatic cancer underscores an urgent need for palliative care. We surveyed palliative care directors at all 65 National Cancer Institute (NCI) cancer centers to assess the utilization and timing of palliative care involvement in pancreatic cancer patients. 1) Does your palliative care team have a policy to get involved with every pancreatic cancer patient? a. Yes b. No 2) When palliative care is involved with pancreatic cancer patients, in what setting are you typically/primarily first asked to be involved? a. Early in the patient's treatment journey (focusing on symptom management) b. Later in the patient's treatment journey (focusing on end-of-life discussions and explaining hospice) All 65 NCI-designated centers responded, achieving 100% of the targeted sample. Among these centers, 64 lacked a policy for palliative care involvement with every pancreatic cancer patient. Additionally, 38 centers initiated intervention early, focusing on symptom management, while 15 centers started palliative care late in the treatment journey, emphasizing end-of-life discussions. Furthermore, 12 centers initiated intervention both early and late when treating pancreatic cancer. There is an increasing recognition among medical centers of palliative care's necessity for pancreatic cancer, with a rising trend toward early integration. Variation in the timing and emphasis of palliative care involvement remains. Future research should explore barriers to accessing palliative care and compare outcomes of early versus late intervention. By addressing these areas, healthcare providers can potentially improve outcomes for pancreatic cancer patients.

Attitude of the Lithuanian Public toward Medical Assistance in Dying: A Cross-Sectional Study.

Euthanasia and assisted suicide, involving the intentional termination of a patient's life, are subjects of global debate influenced by cultural, ethical, and religious beliefs. This study explored the attitudes of the general public toward euthanasia, finding varying levels of support. A cross-sectional study was conducted. This research specifically evaluated the perspectives of 5804 Lithuanian residents using a survey distributed through social media, which presented medical scenarios on life-preserving interventions. Analysis indicated that gender, religion, experience in caring for patients in a terminal condition, education, and age significantly influenced the attitudes of the respondents toward end-of-life decisions. Specifically, factors like being non-religious or having less experience in caring for the terminally ill correlated with a more positive opinion regarding euthanasia and other forms of medical assistance in dying.

The specialized pediatric palliative care service in Italy: how is it working? Results of the nationwide PalliPed study.

BACKGROUND: Accurate estimation of the specialized pediatric palliative care (PPC) burden and the definition of the extent and quality of PPC service in Italy represent urgent needs to enable the proper allocation of PPC resources and the definition of prevention and educational plans. The PalliPed project aimed to provide the first comprehensive assessment of the characteristics of Italian patients requiring PPC, the quality and extent of regional PPC networks/facilities, and the number of dedicated resources. In this paper, we present the results of the second part of the project, regarding the implementation and quality of PPC services in Italy. METHODS: The PalliPed study had an observational cross-sectional design. All Italian specialized PPC centers/facilities were invited to participate in the project and complete a survey on the characteristics of PPC centers/facilities in different care settings, reporting data as of 24 October 2022. Data were collected online. RESULTS: 19 PPC specialized centers/facilities from 12 Italian regions and two autonomous provinces responded to the survey. Among them, 11 are regional referral centers. Seven Italian regions out of 20 reported no PPC centers/facilities, mainly in central-southern Italy. Less than half (45%) of the regional referral centers cover the entire regional territory, and three offer 24/7 service. Ten centers have a dedicated team. Half of the eight non-referral centers offer 24/7 service and have a dedicated team. A total of 1,092 patients were reported by 18 centers as of 24 October 2022. Over the years, an increasing number of patients has been reported, rising from 1,202 (2019) to 1,544 (2021). The dedicated staff is inadequate, and most healthcare providers are not recognized at an institutional level. A shortage of 'young' staff and a lack of specific training was reported, particularly among nurses (77% had no training in PPC). CONCLUSIONS: The results obtained show how training, information, and research interventions are still necessary for the reorganization of the available resources and definition of proper strategies to respond dynamically to the new emerging needs of these populations. At the same time, our study represents a first step in defining a national registry of PPC models, useful for monitoring evolutions, and critical issues and planning any new or corrective strategy.

Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study.

BACKGROUND: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. METHODS: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. RESULTS: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). CONCLUSIONS: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.

The Extent to Which the Wish to Donate One's Organs After Death Contributes to Life-Extension Arguments in Favour of Voluntary Active Euthanasia in the Terminally Ill: An Ethical Analysis.

In terminally ill individuals who would otherwise end their own lives, active voluntary euthanasia (AVE) can be seen as life-extending rather than life-shortening. Accordingly, AVE supports key pro-euthanasia arguments (appeals to autonomy and beneficence) and meets certain sanctity of life objections. This paper examines the extent to which a terminally ill individual's wish to donate organs after death contributes to those life-extension arguments. It finds that, in a terminally ill individual who wishes to avoid experiencing life he considers to be not worth living, and who also wishes to donate organs after death, AVE maximizes the likelihood that such donations will occur. The paper finds that the wish to donate organs strengthens the appeals to autonomy and beneficence, and fortifies the meeting of certain sanctity of life objections, achieved by life-extension arguments, and also generates appeals to justice that form novel life-extension arguments in favour of AVE in this context.

Validation of the Bengali version of the Caregiver Collusion Questionnaire: A tool for measuring collusion among caregivers of terminally ill patients.

Background: In palliative care settings, collusion or "conspiracy of silence" frequently interferes with communication and interpersonal relationships among patients, caregivers, and healthcare professionals. The "Caregiver Collusion Questionnaire" is the only tool available for assessing caregiver collusion. The purpose of the study is to translate and adapt the English version of this instrument into Bengali, followed by standard validation. Methods: The study was carried out in two stages. Four independent translators conducted forward and backward translations of the English version of the "Caregiver Collusion Questionnaire" into Bengali. The Bengali version of the instrument was finalized following expert committee reviews, pre-testing, and cognitive debriefing. The final validation was carried out among 71 caregivers of patients with advanced incurable illnesses admitted to the palliative medicine and internal medicine departments of two Bangladeshi hospitals. In the final phase, the validity (content, face, and construct validity) and reliability (interclass item-wise correlation coefficient) of the translated tool were assessed. Result: 60% of the participants fully understood 19 items, whereas 40% struggled with one or more items. The expert committee expressed their satisfaction with the face and content validity of the translated version. The Bengali version also had quite good reliability (α = 0.62). Seven components were identified using principal component analysis with the distribution of Varimax Rotation distribution. Items under each factor had adequate factor loading, ranging from 0.4 to 0.8. Conclusion: The Bengali version of the "Caregiver Collusion Questionnaire" was found valid reliable and culturally acceptable for measuring caregiver collusion among the Bengali-speaking people. Based on the scale, the reasons for collusion can be identified and measures can be taken for breaking the collusion.

Feasibility and Acceptability of a Novel Intensive Care Unit Communication Intervention ("Let's Talk") and Initial Assessment Using the Multiple Goals Theory of Communication.

Background: Family members of intensive care unit (ICU) patients often report poor communication, feeling unprepared for ICU family meetings, and poor psychological outcomes after decision-making. The objective of this study was to create a tool to prepare families for ICU family meetings and assess feasibility of using Communication Quality Analysis (CQA) to measure communication quality of family meetings. Methods: This observational study was conducted at an academic tertiary care center in Hershey, PA from March 2019 to 2020. Phase 1a involved conceptual design. Phase 1b entailed acceptability testing of 2 versions of the tool (text-only, comic) with 9 family members of non-capacitated ICU patients; thematic analysis of semi-strucutred interviews was conducted. Phase 1c assessed feasibility of applying CQA to audio-recorded ICU family meetings (n = 17); 3 analysts used CQA to assess 6 domains of communication quality. Wilcoxon Signed Rank tests were used to interpret CQA scores. Results: Four themes emerged from Phase 1b interviews: participants 1) found the tool useful for meeting preparation and organizing thoughts, 2) appreciated emotional content, 3) preferred the comic form (67%), and 4) had indifferent or negative perceptions about specific elements. In Phase 1c, clinicians scored higher on the CQA content and engagement domains; family members scored higher on the emotion domain. CQA scores in the relationship and face domains had the lowest quality ratings. Conclusions: Let's Talk may help families become better prepared for ICU family meetings. CQA provides a feasible approach to assessing communication quality that identifies specific areas of strengths and weaknesses in communication.

Go Wish card game-exploring end-of-life wishes of patients in oncology palliative care: a qualitative study.

BACKGROUND: Among the methods that promote quality of life and care, discussing and remembering end-of-life (EOL) wishes for future care may contribute to decision-making about care and the promotion of a good death. Our aim was to investigate the most significant EOL desires among Brazilian cancer patients receiving palliative care (PC). METHODS: This was an exploratory, descriptive, and qualitative study conducted in a Palliative Care Oncology Unit. Fifteen patients played the Go Wish card game (GWCG), choosing and categorizing cards into themes as very important, more or less important, and not important at all. The ten most important cards were discussed, and categories were defined for each card. Cards with the highest frequencies of choice were described. Patients were also asked, "What did playing the cards mean to you?". All data were analyzed using Bardin's content analysis and generated a word cloud to interpret the participants' narratives. RESULTS: Out of the 36 cards, card 19, "I want my family and friends close to me", was the most frequently chosen. Out of the 15 patients studied, only one reported that they initially did not enjoy playing the cards. In this study, the GWCG was effective in fulfilling 90% of the patients' wishes, and this was only possible with the support of the researchers, members of the multi-professional team, and patients' families. CONCLUSIONS: The use of the GWCG in the oncology PC setting made an important contribution to open discussions about patients' values and preferences, as well as being an easy-to-use, understandable, and flexible tool. Prioritizing the fulfillment of patients' wishes was one of the main strengths of this study. Our study suggests working with these wishes as a framework for person-centered care.

Deprescribing Tool for Older PeoPle with Limited-life Expectancy (De-TOPPLE) version 1: Development and validation using a modified Delphi technique.

Deprescribing decision making in older adults with limited life expectancy is often challenging for clinicians. We aimed to develop and validate a Deprescribing Tool for Older People with Limited-life Expectancy (De-TOPPLE). Modified Delphi technique was used to gain experts' consensus on the tool and further develop using their feedback. Experts [Round-1 (n = 13), Round-2 (n = 7)] had clinical and/or research background on geriatric medicine, geriatrics, family medicine or pharmacotherapy. Round-1 consensus was achieved on approach taken by the tool to evaluate risk and benefit; distinguishing medications as preventive, symptom control or dual-purpose; referring to established deprescribing process; stepwise approach to deprescribing; and the overall concept. Common feedback was to reflect upon harm-benefit analysis, distinguish medication types earlier, qualify adverse events, use time-to-benefit (TTB), prioritise symptom relief, monitor post-deprescribing, include shared decision making and define terms for clinical familiarisation. After tool update, Round-2 consensus was achieved on usability in clinical setting, flexibility of implicit judgement, ceasing preventive medication with inadequate TTB, ceasing symptom control medication with inadequate symptom relief, ceasing dual-purpose medication (DPM) with inadequate TTB and symptom relief, and continuing DPM with adequate TTB and symptom relief. De-TOPPLE version 1 was developed and validated through two rounds of the Delphi process. Clinical use of the tool needs final validation following the addition of contextual statements to the tool.

Antibiotics in the end-of-life phase in pediatric oncological patients with a diagnosis of terminal illness: a dilemma.

BACKGROUND: Pediatric cancer patients in the final phase of life receive antibiotics empirically. The decision to start, maintain, or stop the antibiotic administration as part of care at this stage is a dilemma. METHODS: We conducted a retrospective, descriptive, cross-sectional study including cancer patients in the final phase of life, hospitalized during the last 5 to 7 days of life. We included demographic variables, diagnoses, days of hospitalization, cultures, antibiotics used, prevalent symptoms in the last week of life, and principal diagnosis at the time of death, and performed descriptive statistics and a chord diagram. RESULTS: Twenty-two patients were included; 18 (81.81%) received antibiotic treatment. The mean age was 8.75 years. The predominant pathologies were central nervous system tumors in seven patients (31.81%). Of the total, 18 (81.81%) had an infectious diagnosis reported as bloodstream infection, followed by pneumonia in three (13.63%). The main cause of death was respiratory failure (40.9%). Of the 18 patients with an infectious diagnosis, 16 (88.88%) received empiric therapy. Predominant factors for antibiotic use were more than 7 days of hospitalization (75%), ICU admission (100%), invasive devices (88.8%), and aminergic support (100%). The predominant symptoms were dyspnea (68.18%), pain (50%), and fever (40.9%), which persisted in nine (60%), two (18.18%), and five (55.5%) patients, respectively. CONCLUSIONS: The lack of guidelines for antibiotic administration leads to excessive and potentially unnecessary use, which can lead to discomfort, prolonged hospitalization, bacterial resistance, excessive cost, and suffering without symptom control.

INTRODUCCIÓN: Los pacientes pediátricos oncológicos en la fase final de vida reciben antibióticos de forma empírica. La decisión de iniciar, mantener o suspender la administración del antibiótico como parte del cuidado en esta etapa es un dilema. MÉTODOS: Se llevó a cabo un estudio retrospectivo, descriptivo y transversal que incluyó pacientes oncológicos en fase final de vida, hospitalizados durante los últimos 5 a 7 días de vida. Se incluyeron variables demográficas, diagnósticos, días de estancia hospitalaria, cultivos, antibióticos utilizados, síntomas prevalentes en la última semana de vida y diagnóstico principal al momento de fallecer. Se realizó estadística descriptiva y un gráfico de cuerdas. RESULTADOS: Se incluyeron 22 pacientes: 18 (81.81%) recibieron manejo antibiótico. La media de edad fue de 8.75 años. Las patologías predominantes fueron tumores de sistema nervioso central en siete pacientes (31.81%). Del total, 18 (81.81%) pacientes presentaron infección del torrente sanguíneo; tres (13.63%) presentaron neumonía. La principal causa de muerte fue insuficiencia respiratoria (40.9%). De los 18 pacientes con diagnóstico infeccioso, 16 (88.88%) recibieron terapia empírica. Los factores prevalentes para el uso antibiótico fueron una estancia hospitalaria mayor a 7 días (75%), hospitalización en Unidad de Cuidados Intensivos (100%), dispositivos invasivos (88.8%) y apoyo aminérgico (100%). El síntoma prevalente fue disnea (68.18%), dolor (50%) y fiebre (40.9%), mismos que persistieron en nueve (60%), dos (18.18%) y cinco pacientes (55.5%), respectivamente. CONCLUSIONES: La falta de pautas respecto a la administración de antibióticos conlleva a su uso excesivo y potencialmente innecesario, lo cual puede ocasionar incomodidad, prolongar la hospitalización, resistencia bacteriana, costos excesivos y sufrimiento, sin control de los síntomas.