End of life care and the approach of death.
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276 to 300 of 969A Systematic Review of the Peer-Reviewed Literature on Self-Blame, Guilt, and Shame.
This is the first systematic review of the evidence on the prevalence of self-blame, guilt, and shame in bereaved parents. A search of PsychINFO, MEDLINE, Embase, CINAHL, PubMed, and Science Direct resulted in 18 studies for the period 1975 to 2013 which the authors have appraised. Self-blame, guilt, and shame are common in bereaved parents, albeit to varying degrees, with differential relationships to sex, and diminishing over time. There is some evidence that guilt and shame predict more intense grief reactions and that self-blame predicts posttraumatic symptomology, anxiety, and depression in bereaved parents. Heterogeneity of the studies and numerous methodological concerns limit the synthesis and strength of the evidence and the generalizability of the findings. Self-blame, guilt, and shame are commonly experienced by bereaved parents. Awareness of these affective states may assist …
matched on Attitude to Death (mesh)
Attitudes to deceased organ donation and registration as a donor among minority ethnic groups in North America and the U.K.: a synthesis of quantitative and qualitative research.
Objectives: A systematic review and synthesis of quantitative and qualitative research were undertaken to examine attitudes to deceased donation and registration as an organ donor among ethnic minorities in the U.K. and North America.
Design: A systematic search and assessments of relevance and quality were conducted. Parallel syntheses were then undertaken of 14 quantitative and 12 qualitative papers followed by their integration. The synthesis was organised around five barriers that emerged as key issues: (1) knowledge regarding deceased donation and registration as a donor; (2) discussion of donation/registration with family members; (3) faith and cultural beliefs; (4) bodily concerns including disfigurement and intactness; and (5) trust in doctors and the health care system.
Results: In all countries, knowledge of organ donation and registration remained low despite public campaigns,…
matched on Attitude to Death (mesh)
Predictors of complicated grief: a systematic review of empirical studies.
A systematic review of the literature on predictors of complicated grief (CG) was undertaken with the aim of clarifying the current knowledge and to inform future planning and work in CG following bereavement. Predictors of CG prior to the death include previous loss, exposure to trauma, a previous psychiatric history, attachment style, and the relationship to the deceased. Factors associated with the death include violent death, the quality of the caregiving or dying experience, close kinship relationship to the deceased, marital closeness and dependency, and lack of preparation for the death. Perceived social support played a key role after death, along with cognitive appraisals and high distress at the time of the death. Inconsistent definitions of CG and measurement tools were noted in the earlier studies reviewed. Limitations identified in the studies included use of cross-sectional…
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Mindfulness-Based Compassion Training for Health Professionals Providing End-of-Life Care: Impact, Feasibility, and Acceptability.
Background: Health professionals who care for patients and their families at the end of life (EOL) may experience gratitude, and enhanced spirituality and meaning in life, yet they are also at increased risk of psychological distress, compassion fatigue, and occupational burnout given the stressors they encounter in their work. Objectives: This research evaluated the feasibility and acceptability of a novel six-week mindfulness-based compassion training intervention, which was tailored to health professionals involved in EOL care ("MBCT4HP"), and explored its impact on levels of psychological distress, compassion fatigue, compassion satisfaction, occupational burnout, self-compassion, and mindfulness. Design: We adopted an observational, repeated measures pilot study. Setting/Subjects: Thirty-one health professionals participated. The intervention comprised six, weekly sessions (totaling…
matched on Terminal Care (mesh), end of life (text)
Chochinov HM, Johnston W, McClement SE, Hack TF, Dufault B, Enns M, Thompson G, Harlos M, Damant RW, Ramsey CD, Davison S, Zacharias J, Milke D, Strang D, Campbell-Enns HJ, Kredentser MS (2016)cohort or longitudinalMEDLINE-indexed journal, not yet read by usPloS one68 citations Dignity and Distress towards the End of Life across Four Non-Cancer Populations.
Objective: The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations.
Design: A prospective, multi-site approach was used.
Setting: Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada.
Participants: Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly.
Main outcome measure: In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI).
Results: Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; …
matched on Palliative Care (mesh), end of life (text)
Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups.
A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregi…
matched on Terminal Care (mesh), terminal illness (text)
Norms of decision making in the ICU: a case study of two academic medical centers at the extremes of end-of-life treatment intensity.
Purpose: To explore norms of decision making regarding life-sustaining treatments (LSTs) at two academic medical centers (AMCs) that contribute to their opposite extremes of end-of-life ICU use.
Methods: We conducted a 4-week mixed methods case study at each AMC in 2008-2009 involving direct observation of patient care during rounds in the main medical ICU, semi-structured interviews with staff, patients, and families, and collection of artifacts (e.g., patient lists, standardized forms). We compared patterns of decision making regarding initiation, continuation, and withdrawal of LST using tests of proportions and grounded theory analysis of field note and interview transcripts.
Results: We observed 80 patients [26 (32.5 %) ≥65 years old] staffed by 4 attendings, and interviewed 23 staff and 3 patients/families at the low-intensity AMC (LI-AMC), and observed 73 patients [26 (35.6 %) ≥65…
matched on Terminal Care (mesh), end of life (text)
End-of-life care for Medicare beneficiaries with cancer is highly intensive overall and varies widely.
Studies have shown that cancer care near the end of life is more aggressive than many patients prefer. Using a cohort of deceased Medicare beneficiaries with poor-prognosis cancer, meaning that they were likely to die within a year, we examined the association between hospital characteristics and eleven end-of-life care measures, such as hospice use and hospitalization. Our study revealed a relatively high intensity of care in the last weeks of life. At the same time, there was more than a twofold variation within hospital groups with common features, such as cancer center designation and for-profit status. We found that these hospital characteristics explained little of the observed variation in intensity of end-of-life cancer care and that none reliably predicted a specific pattern of care. These findings raise questions about what factors may be contributing to this variation. They al…
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Piers RD, Azoulay E, Ricou B, Dekeyser Ganz F, Decruyenaere J, Max A, Michalsen A, Maia PA, Owczuk R, Rubulotta F, Depuydt P, Meert AP, Reyners AK, Aquilina A, Bekaert M, Van den Noortgate NJ, Schrauwen WJ, Benoit DD, APPROPRICUS Study Group of the Ethics Section of the ESICM (2011)cohort or longitudinalMEDLINE-indexed journal, not yet read by usJAMA245 citations Perceptions of appropriateness of care among European and Israeli intensive care unit nurses and physicians.
Context: Clinicians in intensive care units (ICUs) who perceive the care they provide as inappropriate experience moral distress and are at risk for burnout. This situation may jeopardize patient quality of care and increase staff turnover.
Objective: To determine the prevalence of perceived inappropriateness of care among ICU clinicians and to identify patient-related situations, personal characteristics, and work-related characteristics associated with perceived inappropriateness of care.
Design, setting, and participants: Cross-sectional evaluation on May 11, 2010, of 82 adult ICUs in 9 European countries and Israel. Participants were 1953 ICU nurses and physicians providing bedside care.
Main outcome measure: Perceived inappropriateness of care, defined as a specific patient-care situation in which the clinician acts in a manner contrary to his or her personal and professional belief…
matched on Terminal Care (mesh), end of life (text)
Decision-making and outcomes of feeding tube insertion: a five-state study.
Objectives: To examine family member's perceptions of decision-making and outcomes of feeding tubes.
Design: Mortality follow-back survey. Sample weights were used to account for oversampling and survey design. A multivariate model examined the association between feeding tube use and overall quality of care rating regarding the last week of life.
Setting: Nursing homes, hospitals, and assisted living facilities.
Participants: Respondents whose relative had died from dementia in five states with varying feeding tube use.
Measurements: Respondents were asked about discussions, decision-making, and outcomes related to their loved ones' feeding problems.
Results: Of 486 family members surveyed, representing 9,652 relatives dying from dementia, 10.8% reported that the decedent had a feeding tube, 17.6% made a decision not to use a feeding tube, and 71.6% reported that there was no decision a…
matched on Terminal Care (mesh), end of life (text)
Azoulay E, Timsit JF, Sprung CL, Soares M, Rusinová K, Lafabrie A, Abizanda R, Svantesson M, Rubulotta F, Ricou B, Benoit D, Heyland D, Joynt G, Français A, Azeivedo-Maia P, Owczuk R, Benbenishty J, de Vita M, Valentin A, Ksomos A, Cohen S, Kompan L, Ho K, Abroug F, Kaarlola A, Gerlach H, Kyprianou T, Michalsen A, Chevret S, Schlemmer B, Conflicus Study Investigators and for the Ethics Section of the European Society of Intensive Care Medicine (2009)cohort or longitudinalMEDLINE-indexed journal, not yet read by usAmerican journal of respiratory and critical care medicine339 citations Prevalence and factors of intensive care unit conflicts: the conflicus study.
Rationale: Many sources of conflict exist in intensive care units (ICUs). Few studies recorded the prevalence, characteristics, and risk factors for conflicts in ICUs.
Objectives: To record the prevalence, characteristics, and risk factors for conflicts in ICUs.
Methods: One-day cross-sectional survey of ICU clinicians. Data on perceived conflicts in the week before the survey day were obtained from 7,498 ICU staff members (323 ICUs in 24 countries).
Measurements and main results: Conflicts were perceived by 5,268 (71.6%) respondents. Nurse-physician conflicts were the most common (32.6%), followed by conflicts among nurses (27.3%) and staff-relative conflicts (26.6%). The most common conflict-causing behaviors were personal animosity, mistrust, and communication gaps. During end-of-life care, the main sources of perceived conflict were lack of psychological support, absence of staff mee…
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Sprung CL, Woodcock T, Sjokvist P, Ricou B, Bulow HH, Lippert A, Maia P, Cohen S, Baras M, Hovilehto S, Ledoux D, Phelan D, Wennberg E, Schobersberger W (2008)cohort or longitudinalMEDLINE-indexed journal, not yet read by usIntensive care medicine90 citations Reasons, considerations, difficulties and documentation of end-of-life decisions in European intensive care units: the ETHICUS Study.
Objective: To evaluate physicians' reasoning, considerations and possible difficulties in end-of-life decision-making for patients in European intensive care units (ICUs).
Design: A prospective observational study.
Setting: Thirty-seven ICUs in 17 European countries.
Patients and participants: A total of 3,086 patients for whom an end-of-life decision was taken between January 1999 and June 2000. The dataset excludes patients who died after attempts at cardiopulmonary resuscitation and brain-dead patients.
Measurements and results: Physicians indicated which of a pre-determined set of reasons for, considerations in, and difficulties with end-of-life decision-making was germane in each case as it arose. Overall, 2,134 (69%) of the decisions were documented in the medical record, with inter-regional differences in documentation practice. Primary reasons given by physicians for the decision…
matched on Terminal Care (mesh), end of life (text)
What explains racial differences in the use of advance directives and attitudes toward hospice care?
Cultural beliefs and values are thought to account for differences between African Americans and whites in the use of advance directives and beliefs about hospice care, but few data clarify which beliefs and values explain these differences. Two hundred five adults aged 65 and older who received primary care in the Duke University Health System were surveyed. The survey included five scales: Hospice Beliefs and Attitudes, Preferences for Care, Spirituality, Healthcare System Distrust, and Beliefs About Dying and Advance Care Planning. African Americans were less likely than white subjects to have completed an advance directive (35.5% vs 67.4%, P<.001) and had less favorable beliefs about hospice care (Hospice Beliefs and Attitudes Scale score, P<.001). African Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual belief…
matched on Hospice Care (mesh), Terminal Care (mesh), Attitude to Death (mesh), end of life (text)
Palliative care education in Swiss undergraduate medical curricula: a case of too little, too early.
Palliative medicine education is an important strategy in ensuring that the needs of terminally ill patients are met. A review was conducted in 2007 of the undergraduate curricula of all five of Switzerland's medical schools to identify their palliative care-related content and characteristics. The average number of mandatory hours of palliative care education is 10.2 h (median 8 h; range 0-27 h), significantly short of the 40 h recommended by the European Palliative Care Association's Education Expert Group. The median time allocated to designated palliative care blocks is 3 h (range 0-8 h). Most of the education occurs before the clinical years, and there are no mandatory clinical rotations. Three schools offer optional clinical rotations but these are poorly attended (<10% of students). Although a number of domains are covered, ethics-related content predominates; 21 of a total of 51 …
matched on Palliative Care (mesh), terminal illness (text)
Health literacy not race predicts end-of-life care preferences.
Background: Several studies have reported that African Americans are more likely than whites to prefer aggressive treatments at the end of life.
Objective: Since the medical information presented to subjects is frequently complex, we hypothesized that apparent differences in end-of-life preferences and decision making may be due to disparities in health literacy. A video of a patient with advanced dementia may overcome communication barriers associated with low health literacy.
Design: Before and after oral survey.
Participants: Subjects presenting to their primary care doctors.
Methods: Subjects were asked their preferences for end-of-life care after they heard a verbal description of advanced dementia. Subjects then viewed a 2-minute video of a patient with advanced dementia and were asked again about their preferences. For the analysis, preferences were dichotomized into comfort care …
matched on Terminal Care (mesh), end of life (text)
Empathy and life support decisions in intensive care units.
Background: Although experts advocate that physicians should express empathy to support family members faced with difficult end-of-life decisions for incapacitated patients, it is unknown whether and how this occurs in practice.
Objectives: To determine whether clinicians express empathy during deliberations with families about limiting life support, to develop a framework to understand these expressions of empathy, and to determine whether there is an association between more empathic statements by clinicians and family satisfaction with communication.
Design: Multi-center, prospective study of audiotaped physician-family conferences in intensive care units of four hospitals in 2000-2002.
Measurements: We audiotaped 51 clinician-family conferences that addressed end-of-life decisions. We coded the transcripts to identify empathic statements and used constant comparative methods to categ…
matched on Terminal Care (mesh), end of life (text)
Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer.
Background: In the present study, we investigated the situation of children who had succumbed to their malignancy in Germany as perceived by their parents. Specifically, we were interested in bereaved parents' perspective on five essential areas: 1) symptoms and quality of life, 2) characteristics of the child's death, 3) anticipation of their child's death and care delivery, 4) end-of-life decisions and 5) impact of the child's death on the parents and perceived social support by the health care team.
Materials and methods: We contacted all existing departments for paediatric oncology in the German federal state of Nordrhein Westfalen and asked them to contact all parents for participation in our study who had lost their child to cancer in 1999 and 2000. Upon agreement, we interviewed the parents utilising a validated semi-structured interview on distressing symptoms and quality of life…
matched on Palliative Care (mesh), Terminal Care (mesh), Attitude to Death (mesh), end of life (text)
Toward shared decision making at the end of life in intensive care units: opportunities for improvement.
Background: In North America, families generally wish to be involved in end-of-life decisions when the patient cannot participate, yet little is known about the extent to which shared decision making occurs in intensive care units.
Methods: We audiotaped 51 physician-family conferences about major end-of-life treatment decisions at 4 hospitals from August 1, 2000, to July 31, 2002. We measured shared decision making using a previously validated instrument to assess the following 10 elements: discussing the nature of the decision, describing treatment alternatives, discussing the pros and cons of the choices, discussing uncertainty, assessing family understanding, eliciting patient values and preferences, discussing the family's role in decision making, assessing the need for input from others, exploring the context of the decision, and eliciting the family's opinion about the treatment d…
matched on Terminal Care (mesh), end of life (text)
Nephrologists' reported preparedness for end-of-life decision-making.
Nephrologists commonly engage in end-of-life decision-making with patients with ESRD and their families. The purpose of this study was to determine the perceived preparedness of nephrologists to make end-of-life decisions and to determine factors that are associated with the highest level of perceived preparedness. The nephrologist members of the Renal Physicians Association (RPA) and the Canadian Society of Nephrology were invited to participate in an online survey of their end-of-life decision-making practices. A total of 39% of 360 respondents perceived themselves as very well prepared to make end-of-life decisions. Age >46 yr, six or more patients withdrawn from dialysis in the preceding year, and awareness of the RPA/American Society of Nephrology (ASN) guideline on dialysis decision-making were independently associated with the highest level of self-reported preparedness. Nephrolog…
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Religious coping among caregivers of terminally ill cancer patients: main effects and psychosocial mediators.
This study investigated the association between religious coping, mental health and the caring experience, as well as potential explanatory mechanisms, among 162 informal caregivers of terminally ill cancer patients. Regression analyses indicated that, controlling for socio-demographic variables, more use of positive religious coping strategies was associated with more burden, yet, also more satisfaction. In contrast, more use of negative religious coping strategies was related to more burden, poorer quality of life and less satisfaction, and correlated with an increased likelihood of Major Depressive Disorder and anxiety disorders. In a number of models, negative religious coping was related to outcomes through its relationship with social support, optimism and self-efficacy. Implications for research and healthcare are discussed.
matched on Terminal Care (mesh), terminal illness (text)
Understanding cardiopulmonary resuscitation decision making: perspectives of seriously ill hospitalized patients and family members.
Background: To improve communication and decision making related to cardiopulmonary resuscitation (CPR), a greater understanding of the perspectives of hospitalized patients with advanced diseases and their family members are needed.
Methods: In five Canadian hospitals, we administered a face-to-face questionnaire to older inpatients with end-stage cancer and advanced medical diseases and, where possible, to one of their family members, regarding information needs, the deliberation process, and their preferred decisional role.
Findings: A total of 440 of 569 patients (78%) and 160 of 176 available caregivers (91%) agreed to participate. Most patients (61%) had thought about what treatment they wanted if their heart stopped, few patients (11.3%) could describe more than two components of CPR, and only 2.7% of patients thought that the success rate of CPR was < 10%. A minority of patients …
matched on Terminal Care (mesh), end of life (text)
End-of-life decisions: a cohort study of the withdrawal of all active treatment in intensive care units in the United Kingdom.
Objective: To describe the epidemiology of active treatment withdrawal in a nationally representative cohort of intensive care units (ICUs) focusing on between-unit differences.
Design and setting: Cohort study in 127 adult general ICUs in England, Wales and Northern Ireland, 1995 to 2001.
Patients: 118,199 adult admissions to ICUs.
Measurements and results: The decision to withdraw all active treatment was made for 11,694 of 118,199 patients (9.9%). There were a total of 36,397 deaths (30.8%) before discharge from hospital, and 11,586 (31.8%) of these occurred after the decision to withdraw active treatment, with no change over time (p=0.54). Considerable variation existed between units regarding the percentage of ICU deaths that occurred after the decision to withdraw active treatment (1.7-96.1%). Median time to death after the decision to withdraw active treatment was 2.4 h; 8% surviv…
matched on Terminal Care (mesh), end of life (text)
End-of-life care in black and white: race matters for medical care of dying patients and their families.
Objectives: To compare the end-of-life medical care experienced by African-American and white decedents and their families.
Design: Cross-sectional, retrospective survey with weighted results based on a two-stage probability sampling design.
Setting: Hospitals, nursing homes, and home-based medical services across the United States.
Participants: Surrogates (N=1,447; primarily family members) for decedents from 22 states.
Measurements: Validated end-of-life care outcomes concerning symptom management, decision-making, informing and supporting families, individualized care, coordination, service utilization, and financial impact.
Results: Family members of African-American decedents were less likely than those of white decedents to rate the care received as excellent or very good (odds ratio (OR)=0.4). They were more likely to report absent (OR=2.4) or problematic (OR=1.9) physician commu…
matched on Terminal Care (mesh), end of life (text)
Hospice and palliative medicine: new subspecialty, new opportunities.
Palliative care is the physical, psychological, social, and spiritual care provided to patients from diagnosis to death or resolution of a life-threatening illness. Hospice care is a comprehensive program of care that is appropriate when patients with chronic, progressive, and eventually fatal illness are determined to have a prognosis of 6 months or fewer. Hospice and palliative medicine has now been recognized by the American Board of Medical Subspecialties as a field with a unique body of knowledge and practice. With 9 other specialty boards, the American Board of Emergency Medicine has cosponsored hospice and palliative medicine as an official subspecialty. As a result, board-certified emergency physicians may now pursue certification in hospice and palliative medicine through either fellowship training or, for a limited time, completing practice track requirements, followed by a wri…
matched on Hospice Care (mesh), Palliative Care (mesh), Advance Care Planning (mesh)
Survival outcomes of supportive care versus dialysis therapies for elderly patients with end-stage kidney disease: A systematic review and meta-analysis.
Aim: Elderly people comprise a large and growing proportion of the global dialysis population. Regional differences in rates of dialysis in the elderly suggest multiple factors influence treatment decision-making including beliefs about the relative benefits and harms of dialysis and supportive (non-dialysis) care. We therefore systematically reviewed the literature reporting survival of elderly patients treated with either treatment pathway.
Methods: Systematic review and meta-analysis of cohort studies or randomized controlled trials identified in MEDLINE, EMBASE and the Cochrane Central Register of Controlled Trials published before July 2014. Survival by treatment modality was calculated. Subgroup analyses by study design, study size, patient age and cohort era were conducted.
Results: Eighty-nine studies published between 1976 and 2014 reported on 294 921 elderly end-stage kidney di…
matched on Palliative Care (keyword)