End of life care and the approach of death.
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301 to 325 of 969COVID-19: guidance on palliative care from a European Respiratory Society international task force.
Background: Many people are dying from coronavirus disease 2019 (COVID-19), but consensus guidance on palliative care in COVID-19 is lacking. This new life-threatening disease has put healthcare systems under pressure, with the increased need of palliative care provided to many patients by clinicians who have limited prior experience in this field. Therefore, we aimed to make consensus recommendations for palliative care for patients with COVID-19 using the Convergence of Opinion on Recommendations and Evidence (CORE) process.
Methods: We invited 90 international experts to complete an online survey including stating their agreement, or not, with 14 potential recommendations. At least 70% agreement on directionality was needed to provide consensus recommendations. If consensus was not achieved on the first round, a second round was conducted.
Results: 68 (75.6%) experts responded in the …
matched on Palliative Care (mesh), Advance Care Planning (mesh)
Patient participation in shared decision-making in palliative care - an integrative review.
Background: Shared decision-making is a process where the decisions regarding patients' care are done in collaboration with the patient, the patient's family and a healthcare professional or an interdisciplinary team. Shared decision-making is considered to be a part of patient centred care, and it enables patient autonomy which is a cornerstone of palliative care. In the past, research on the experiences of palliative care patients' participation in shared decision-making involving a nurse has been limited as the focus has mainly been on specific medical interventions, rather than holistic palliative care.
Objectives: To synthesise research findings on patient participation in shared decision-making in palliative care.
Research design: An integrative literature review.
Methods: The literature search was conducted by searching computerised databases (CINAHL, PubMed, PsychINFO and COCHRAN…
matched on Palliative Care (mesh), Palliative Care (keyword), end of life (text)
Palliative care in intensive care units: why, where, what, who, when, how.
Palliative care is patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering when "curative" therapies are futile. In the Intensive Care Unit (ICU), critically ill patients receive life-sustaining therapies with the goal of restoring or maintaining organ function. Palliative Care in the ICU is a widely discussed topic and it is increasingly applied in clinics. It encompasses symptoms control and end-of-life management, communication with relatives and setting goals of care ensuring dignity in death and decision-making power. However, effective application of Palliative Care in ICU presupposes specific knowledge and training which anesthesiologists and critical care physicians may lack. Moreover, logistic issues such protocols for patients' selection, application models and triggers for consultation of external experts are still ma…
matched on Palliative Care (mesh), Palliative Care (keyword), end of life (text)
Weaver MS, Heinze KE, Bell CJ, Wiener L, Garee AM, Kelly KP, Casey RL, Watson A, Hinds PS, Pediatric Palliative Care Special Interest Group at Children’s National Health System (2016)reviewMEDLINE-indexed journal, not yet read by usPalliative medicine111 citations Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review.
Background: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate.
Aim: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors.
Design: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology.
Data sources: Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-…
matched on Palliative Care (mesh), Palliative Care (keyword), end of life (text)
Measuring and communicating meaningful outcomes in neonatology: A family perspective.
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether an intervention improves outcomes), (4) end-of-life decision-making, (5) to better understand the effects of neonatal conditions and/or interventions on organs and/or long-term health, and finally (6) to better prepare parents for the future. However, the outcomes evaluated have been selected by investigators, based on feasibility, availability, cost, stability, and on what investigators consider to be important. Many of the routinely measured outcomes have major limitations: they may not correlate well with long-term difficulties, they may artificially divide continuous outcomes into dichotomous ones, and may have no clear relations…
matched on Palliative Care (mesh), Palliative Care (keyword), end of life (text)
Adolescent end of life preferences and congruence with their parents' preferences: results of a survey of adolescents with cancer.
Background: Little is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers.
Procedure: Trained facilitators administered surveys orally to adolescents and families in the intervention arm of the FAmily CEntered Advance Care Planning (ACP) for Teens with Cancer (FACE-TC) study. In addition, a post-hoc survey was sent to oncology providers.
Results: Seventeen adolescent/family dyads completed this survey. Seventy five percent of adolescents believed it was appropriate to discuss EOL decisions early and only 12% were not comfortable discussing death. Most preferred to be at home if dying. There were substantial areas of congruen…
matched on Attitude to Death (mesh), end of life (text)
Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology.
The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear. Parents and healthcare providers may have different values regarding the provisi…
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Lichtenthal WG, Catarozoli C, Masterson M, Slivjak E, Schofield E, Roberts KE, Neimeyer RA, Wiener L, Prigerson HG, Kissane DW, Li Y, Breitbart W (2019)clinical trialMEDLINE-indexed journal, not yet read by usPalliative & supportive care57 citations An open trial of meaning-centered grief therapy: Rationale and preliminary evaluation.
Objective: To determine the preliminary feasibility, acceptability, and effects of Meaning-Centered Grief Therapy (MCGT) for parents who lost a child to cancer.
Method: Parents who lost a child to cancer and who were between six months and six years after loss and reporting elevated levels of prolonged grief were enrolled in open trials of MCGT, a manualized, one-on-one cognitive-behavioral-existential intervention that used psychoeducation, experiential exercises, and structured discussion to explore themes related to meaning, identity, purpose, and legacy. Parents completed 16 weekly sessions, 60-90 minutes in length, either in person or through videoconferencing. Parents were administered measures of prolonged grief disorder symptoms, meaning in life, and other assessments of psychological adjustment preintervention, mid-intervention, postintervention, and at three months postinterven…
matched on Hospice Care (mesh)
Quality of Life and Compassion Satisfaction in Clinicians: A Pilot Intervention Study for Reducing Compassion Fatigue.
Background: Compassion fatigue (CF) is prevalent in healthcare professionals, particularly in those caring for chronic, acutely ill, and/or those patients who might be moving toward comfort care. Over time, CF can lead to burnout (BO) and secondary traumatic stress and an overall decrease in professional quality of life. In this pilot study, participants completed a resiliency program focused on education about CF and self-awareness of its individualized impact and were expected to develop ongoing self-care practices to prevent/address the untoward effects.
Methods: Healthcare professionals ( N = 15) participated in a formalized educational program consisting of three 90-minute educational sessions held 2 weeks apart. Preassessment and postintervention data were collected electronically in survey format. A postprogram evaluation was also offered.
Results: Upon completion of the program, …
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Implementation of a Care Pathway for Primary Palliative Care in 5 research clusters in Belgium: quasi-experimental study protocol and innovations in data collection (pro-SPINOZA).
Background: Starting with early identification of palliative care patients by general practitioners (GPs), the Care Pathway for Primary Palliative Care (CPPPC) is believed to help primary health care workers to deliver patient- and family-centered care in the last year of life. The care pathway has been pilot-tested, and will now be implemented in 5 Belgian regions: 2 Dutch-speaking regions, 2 French-speaking regions and the bilingual capital region of Brussels. The overall aim of the CPPPC is to provide better quality of primary palliative care, and in the end to reduce the hospital death rate. The aim of this article is to describe the quantitative design and innovative data collection strategy used in the evaluation of this complex intervention.
Methods/design: A quasi-experimental stepped wedge cluster design is set up with the 5 regions being 5 non-randomized clusters. The primary o…
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The needs of patients with advanced, incurable cancer.
Background: Limited research has investigated the specific needs of patients with advanced incurable cancer. The aim of this study was to describe the prevalence of perceived needs among this population.
Methods: Medical specialists from two regions in New South Wales, Australia, identified patients with advanced, incurable cancer, who were estimated to have a life expectancy of <2 years and were not receiving formal palliative care. Of the 418 eligible patients, 246 (59%) consented to participate. Consenting patients completed the Needs Assessment for Advanced Cancer Patients questionnaire, which has demonstrable validity and reliability. Patients' perceived needs were assessed across the seven domains of the questionnaire: psychological, daily living, medical communication and information, symptom related, social, spiritual and financial needs.
Results: Patients identified the greatest…
matched on Terminal Care (mesh)
Andy Hau Yan Ho; Josip Car; Moon‐Ho Ringo Ho and 3 others (2017)randomised controlled trialMEDLINE-indexed journal, not yet read by usTrials57 citations
A novel Family Dignity Intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial
BACKGROUND: The lack of a holistic approach to palliative care can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian palliative care. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient's family. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of FDI in reducing psychosocial, emotional, spiritual, and psychop…
matched on end of life (text), terminal illness (text)
Piers R, Albers G, Gilissen J, De Lepeleire J, Steyaert J, Van Mechelen W, Steeman E, Dillen L, Vanden Berghe P, Van den Block L (2018)reviewMEDLINE-indexed journal, not yet read by usBMC palliative care137 citations Advance care planning in dementia: recommendations for healthcare professionals.
Background: Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care.
Methods: Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, …
matched on Palliative Care (mesh), Advance Care Planning (mesh), end of life (text)
Factors Impacting Advance Care Planning among African Americans: Results of a Systematic Integrated Review.
Background: African Americans (AA) are more likely to receive worse end-of-life (EOL) care and are less likely to participate in advance care planning (ACP) than white Americans.
Objective: Our goal was to understand factors impacting ACP among AA and explore their interactions, in order to guide further research and intervention development.
Methods: We systematically identified, using Medline, Embase, and World of Science databases, the quantitative and qualitative ACP literature in which AA were included. We assessed the quality of these studies and evaluated the literature in an iterative and integrative fashion, using themes developed from the qualitative literature to understand and categorize findings from the quantitative literature.
Results: Thirty-eight mostly moderate and low quality quantitative studies focused largely on advance directive (AD) completion. Whereas most conclu…
matched on Terminal Care (mesh), Advance Care Planning (mesh), end of life (text)
Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008).
The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998-2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison …
matched on Terminal Care (mesh), Terminally Ill (mesh), end of life (text)
Communication about cancer near the end of life.
Cancer communication near the end of life has a growing evidence base, and requires clinicians to draw on a distinct set of communication skills. Patients with advanced and incurable cancers are dealing with the emotional impact of a life-limiting illness, treatment decisions that are complex and frequently involve consideration of clinical trials, and the challenges of sustaining hope while also having realistic goals. In this review, the authors sought to provide a guide to important evidence about communication for patients with advanced cancer regarding communication at diagnosis, discussing prognosis, decision making about palliative anticancer therapy and phase 1 trials, advance care planning, transitions in focus from anticancer to palliative care, and preparing patients and families for dying and death.
matched on Palliative Care (mesh), Terminally Ill (mesh), end of life (text)
Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research.
Background: In order to improve the state of science in palliative care, we must increase our ability to document the real-time experience of patients and families as they traverse the end of life. Yet, frequently, prospective measurement is impeded by difficulty with patient identification, recruitment, enrollment, and retention. The palliative care literature is replete with descriptions of studies unable to meet enrollment goals, and that as a result, do not have adequate power to test hypotheses or draw conclusions.
Objectives: To review the literature describing difficulties associated with ascertainment, enrollment, and attrition. To outline the successful recruitment methods of a new longitudinal study of patients and their caregivers.
Design: A two-year longitudinal study of 240 patients with Stage IV cancer (breast, prostate, colorectal, lung), advanced congestive heart failure …
matched on Palliative Care (mesh), Terminally Ill (mesh), end of life (text)
Kinlaw K (2005)reviewMEDLINE-indexed journal, not yet read by usSeminars in oncology nursing12 citations Ethical issues in palliative care.
Objectives: To review important issues that address respect for patient autonomy, beneficnce, non-maleficence, and justice, which are included in communication surrounding the determination of decision-making capacity, informed consent, breaking bad news, and creating shared goals of care.
Data sources: Review articles, and government and organizational reports.
Conclusion: Palliative care and its proximity to end-of-life care issues frequently raises ethical issues for patients, their families, and the clinicians caring for them. Supporting the identification and honoring the patient's preferences for treatment are central components of ethical behavior.
Implications for nursing practice: Advance care planning provides an important opportunity for respecting patient autonomy and may be helpful when discussing care options surrounding resuscitation, withholding or withdrawal of treatment…
matched on Palliative Care (mesh), Advance Care Planning (mesh), end of life (text)
Chinese familial tradition and Western influence: a case study in Singapore on decision making at the end of life.
Decision making for an incompetent patient at the end of life is difficult for both family members and physicians alike. Often, palliative care teams are tasked with weaving through opinions, emotions, and goals in search for an amenable solution. Occasionally, these situations get challenging. We present the case of an elderly Chinese Singaporean with metastatic cancer, whose family and physicians had conflicting goals of care. The former was adamant on treating the patient's disease with an untested drug, whereas the latter aimed to treat his symptoms with more conventional medication. Drug-drug interactions prevented treatment with both. Beginning with a discussion of the patient's best interest, we delve into the Singaporean context to show how culture affects medical decision making. Confucianism and filial piety are the values on which this family's workings were based. In an analy…
matched on Palliative Care (mesh), Terminal Care (mesh), end of life (text)
Tulsky JA (2005)case reportMEDLINE-indexed journal, not yet read by usJAMA221 citations Beyond advance directives: importance of communication skills at the end of life.
Patients and their families struggle with myriad choices concerning medical treatments that frequently precede death. Advance directives have been proposed as a tool to facilitate end-of-life decision making, yet frequently fail to achieve this goal. In the context of the case of a man with metastatic cancer for whom an advance directive was unable to prevent a traumatic death, I review the challenges in creating and implementing advance directives, discuss factors that can affect clear decision making; including trust, uncertainty, emotion, hope, and the presence of multiple medical providers; and offer practical suggestions for physicians. Advance care planning remains a useful tool for approaching conversations with patients about the end of life. However, such planning should occur within a framework that emphasizes responding to patient and family emotions and focuses more on goals …
matched on Palliative Care (mesh), Terminal Care (mesh), end of life (text)
Unconscious death thoughts: Do they play a role in time trade-off and visual analogue scale scores for health?
BACKGROUND: Several factors influence the Time Trade-off (TTO) and Visual Analogue Scale (VAS) health measures. In qualitative TTO studies, respondents often report thoughts of death which may induce mortality awareness. According to Terror Management Theory (TMT), mortality awareness gives rise to anxiety and increases unconscious death thought accessibility (DTA), potentially mitigated by secure attachment. Therefore a relation between DTA and attachment versus TTO and VAS is expected. RESEARCH QUESTIONS: (1) Does DTA occur in TTO and VAS methods, (2) How are DTA and attachment related to TTO and VAS scores. We hypothesize: (1) DTA increases when respondents complete TTO or VAS tasks, and (2) TTO scores increase in those with a secure attachment. METHODS: In an online experiment, 4572 members of the general public were randomised to one of four conditions: TTO, VAS, Mortality Salient (…
matched on Attitude to Death (mesh)
Kheibari A, Cerel J (2021)randomised controlled trialMEDLINE-indexed journal, not yet read by usSuicide & life-threatening behavior7 citations Does self-esteem inflation mitigate mortality salience effects on suicide attitudes?
Introduction: Suicide stigma is a major barrier to prevention and intervention efforts. Using terror management theory as the guiding framework, the present study examined whether enhancing self-esteem would buffer against suicide stigma and lead to prosocial attitudes and behavior.
Methods: Experimental methods were utilized in the present study. After being primed with death-related thoughts, participants were randomly assigned to one of two conditions: (1) positive feedback (experimental group) and (2) no feedback (control group). The dependent variables included (1) evaluations of a suicide decedent, (2) intentions to intervene against suicide, and (3) charitable donation behavior toward a suicide prevention organization.
Results: The most consistent findings for the self-esteem boost hypothesis were for the interaction effects of death anxiety and self-esteem boost for the donation …
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Does intensity of stimulus and culture matter in death anxiety?
Two experiments were designed to study the effect of mortality salience (MS) and terror attack news on socioreligious attribution of Muslims in Pakistan. The first sample of students (n = 238) was taken from public and private universities of Pakistan. The age range of the sample was 18-37 years. Participants were randomly assigned to one of eight conditions: 2 (MS vs. pain salience) × 4 (non-Muslims attacking Muslims vs. Muslims attacking non-Muslims vs. Muslims attacking Muslims vs. weather news). Results indicated a non-significant main effect of MS (p = .83) on socioreligious attribution. Similarly, a non-significant interaction effect (p = .76.) on socioreligious attribution was found. However, the main effect of terror news was significant (p = .01). Post hoc analyses revealed that individuals exposed to the news video showing Muslims attacking non-Muslims scored significantly high…
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Kentish-Barnes N, Chevret S, Champigneulle B, Thirion M, Souppart V, Gilbert M, Lesieur O, Renault A, Garrouste-Orgeas M, Argaud L, Venot M, Demoule A, Guisset O, Vinatier I, Troché G, Massot J, Jaber S, Bornstain C, Gaday V, Robert R, Rigaud JP, Cinotti R, Adda M, Thomas F, Calvet L, Galon M, Cohen-Solal Z, Cariou A, Azoulay E, Famirea Study Group (2017)randomised controlled trialMEDLINE-indexed journal, not yet read by usIntensive care medicine103 citations Effect of a condolence letter on grief symptoms among relatives of patients who died in the ICU: a randomized clinical trial.
Purpose: Family members of patients who die in the intensive care unit (ICU) may experience symptoms of stress, anxiety, depression, posttraumatic stress disorder (PTSD), and/or prolonged grief. We evaluated whether grief symptoms were alleviated if the physician and the nurse in charge at the time of death sent the closest relative a handwritten condolence letter.
Methods: Multicenter randomized trial conducted among 242 relatives of patients who died at 22 ICUs in France between December 2014 and October 2015. Relatives were randomly assigned to receiving (n = 123) or not receiving (n = 119) a condolence letter. The primary endpoint was the Hospital Anxiety and Depression Score (HADS) at 1 month. Secondary endpoints included HADS, complicated grief (ICG), and PTSD-related symptoms (IES-R) at 6 months. Observers were blinded to group allocation.
Results: At 1 month, 208 (85.9%) relative…
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Smoking Is So Ew!: College Smokers' Reactions to Health- Versus Social-Focused Antismoking Threat Messages.
This study utilizes Terror Management Theory (TMT) to examine differences between eliciting social death and physical death anxiety related to smoking, smoking attitudes, and quitting intent among college students. Moreover, an important TMT variable-self-esteem-was used as a moderator. A 2 × 3 between-subjects factorial design crossed smoking-based self-esteem (low, high) with mortality salience manipulation (health-focused, social-focused, control). Results suggest while both making health-focused salient and making social-focused mortality salient were effective at getting smokers to quit, there was less effect for health-focused mortality salience on those whose self-esteem is strongly tied to smoking. Effect of social-focused mortality salience was more pronounced among participants who highly linked self-esteem with smoking. For smokers with low smoking-based self-esteem, both heal…
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