End of life care and the approach of death.
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26 to 50 of 969Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial.
Purpose: To determine whether the use of a goals-of-care video to supplement a verbal description can improve end-of-life decision making for patients with cancer.
Methods: Fifty participants with malignant glioma were randomly assigned to either a verbal narrative of goals-of-care options at the end of life (control), or a video after the same verbal narrative (intervention) in this randomized controlled trial. The video depicts three levels of medical care: life-prolonging care (cardiopulmonary resuscitation [CPR], ventilation), basic care (hospitalization, no CPR), and comfort care (symptom relief). The primary study outcome was participants' preferences for end-of-life care. The secondary outcome was participants' uncertainty regarding decision making (score range, 3 to 15; higher score indicating less uncertainty). Participants' comfort level with the video was also measured.
Result…
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Curtis JR (2008)reviewMEDLINE-indexed journal, not yet read by usThe European respiratory journal164 citations Palliative and end-of-life care for patients with severe COPD.
Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality worldwide. For many patients, maximal therapy for COPD produces only modest or incomplete relief of disabling symptoms and these symptoms result in a significantly reduced quality of life. Despite the high morbidity and mortality associated with severe COPD, many patients receive inadequate palliative care. There are several reasons for this. First, patient-physician communication about palliative and end-of-life care is infrequent and often of poor quality. Secondly, the uncertainty in predicting prognosis for patients with COPD makes communication about end-of-life care more difficult. Consequently, patients and their families frequently do not understand that severe COPD is often a progressive and terminal illness. The purpose of the present review is to summarise recent research regarding palli…
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Communication in palliative care: talking about the end of life, before the end of life.
Increasing evidence demonstrates the benefits of early end-of-life care discussions with patients with life-threatening illness and their families. However, these conversations often do not occur. This review explores some of the many barriers faced by clinicians in relation to end-of-life care discussions, including prognostic uncertainty, fear of causing distress, navigating patient readiness and feeling unprepared for these conversations. The value of core clinical communication skills, potential strategies for improvement and areas for future research are also discussed. It is essential that clinicians offer patients facing life-threatening illness, and those close to them, the opportunity to discuss end-of-life issues in line with their information and decision-making preferences. With a growing and ageing global population, supporting both generalist and specialist providers of pal…
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The Role and Response of Palliative Care and Hospice Services in Epidemics and Pandemics: A Rapid Review to Inform Practice During the COVID-19 Pandemic.
Cases of coronavirus disease 2019 (COVID-19) are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multimorbidity. This study aimed to synthesize evidence for the role and response of palliative care and hospice teams to viral epidemics/pandemics and inform the COVID-19 pandemic response. We conducted a rapid systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines in five databases. Of 3094 articles identified, 10 were included in this narrative synthesis. Included studies were from West Africa, Taiwan, Hong Kong, Singapore, the U.S., and Italy. All had an observational design. Findings were synthesized using a previously proposed framework according to systems (policies, training and protocols, communication and coordination, and data), staff (deployment, skill…
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Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: a systematic review.
Objectives: The need for better understanding of end-of-life care has never been greater. Debate about recent U.S. healthcare system reforms has highlighted that end-of-life decision-making is contentious. Providing compassionate end-of-life care that is appropriate and in accordance with patient wishes is an essential component of critical care. Because discord can undermine optimal end-of-life care, knowledge of factors that influence decision-making is important. We performed a systematic review to determine which factors are known to influence end-of-life decision-making among patients and healthcare providers. DATA SOURCES, SELECTION, AND ABSTRACTION: We conducted a structured search of Ovid Medline for interventional and observational research articles incorporating critical care and end-of-life decision-making terms.
Data synthesis: Of 6259 publications, 102 were relevant to our r…
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Kinoshita H, Maeda I, Morita T, Miyashita M, Yamagishi A, Shirahige Y, Takebayashi T, Yamaguchi T, Igarashi A, Eguchi K (2015)MEDLINE-indexed journal, not yet read by usJournal of clinical oncology : official journal of the American Society of Clinical Oncology124 citations Place of death and the differences in patient quality of death and dying and caregiver burden.
Purpose: To explore the associations between place of death and quality of death and dying and caregiver burden in terminally ill patients with cancer and their families.
Methods: Two bereavement surveys were conducted in October 2008 and October 2011. A total of 2,247 family caregivers of patients with cancer who were deceased responded to the mail surveys (response rate, 67%). Family members reported patient quality of death and dying and caregiver burden by using the Good Death Inventory and Caregiving Consequences Inventory.
Results: Patient quality of death and dying was significantly higher at home relative to other places of dying after adjustment for patient and/or family characteristics (adjusted means): 5.0 (95% CI, 4.9 to 5.2) for home, 4.6 (95% CI, 4.5 to 4.7) for palliative care units, and 4.3 (95% CI, 4.2 to 4.4) for hospitals. For all combinations, pairwise P < .001; the s…
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The Effect of Advance Care Planning on Heart Failure: a Systematic Review and Meta-analysis.
Background: Advance care planning is widely advocated to improve outcomes in end-of-life care for patients suffering from heart failure. But until now, there has been no systematic evaluation of the impact of advance care planning (ACP) on clinical outcomes. Our aim was to determine the effect of ACP in heart failure through a meta-analysis of randomized controlled trials (RCTs).
Methods: We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index and PsycINFO (inception to July 2018). We selected RCTs including adult patients with heart failure treated in a hospital, hospice or community setting. Three reviewers independently screened studies, extracted data, assessed the risk of bias (Cochrane risk of bias tool) and evaluated the quality of evidence (GRADE tool) and analysed interventions accordi…
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Singer AE, Goebel JR, Kim YS, Dy SM, Ahluwalia SC, Clifford M, Dzeng E, O'Hanlon CE, Motala A, Walling AM, Goldberg J, Meeker D, Ochotorena C, Shanman R, Cui M, Lorenz KA (2016)systematic reviewMEDLINE-indexed journal, not yet read by usJournal of palliative medicine135 citations Populations and Interventions for Palliative and End-of-Life Care: A Systematic Review.
Importance: Evidence supports palliative care effectiveness. Given workforce constraints and the costs of new services, payers and providers need help to prioritize their investments. They need to know which patients to target, which personnel to hire, and which services best improve outcomes.
Objective: To inform how payers and providers should identify patients with "advanced illness" and the specific interventions they should implement, we reviewed the evidence to identify (1) individuals appropriate for palliative care and (2) elements of health service interventions (personnel involved, use of multidisciplinary teams, and settings of care) effective in achieving better outcomes for patients, caregivers, and the healthcare system.
Evidence review: Systematic searches of MEDLINE, EMBASE, PsycINFO, Web of Science, and Cochrane Database of Systematic Reviews databases (1/1/2001-1/8/2015…
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A review of the trials which examine early integration of outpatient and home palliative care for patients with serious illnesses.
Background: Palliative care has emerged as care that specifically aims to address gaps inherent in disease-centered approaches in order to enhance care quality in serious illness, both for patients and families and for health care systems. Late palliative care for patients with serious illness mitigates benefits to patients, families, and health care systems. Efforts have been made by investigators to define the impact of earlier palliative care interventions on patient, family and health care systems outcomes. We conducted a systematic review of randomized trials of outpatient and home palliative care, two locations where earlier palliative care do occur, to examine the evidence for palliative care benefits.
Methods: Various terms were used; the search was performed in PubMed. From this search randomized trials were selected from 62 references derive from this search which appeared to b…
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A systematic review of satisfaction with care at the end of life.
The objective of this study was to systematically review the literature to better understand the conceptualization of satisfaction with end-of-life care and the effectiveness of palliative care interventions on this outcome. Data sources included Medline and the Database of Reviews of Effects. The review included relevant qualitative studies and intervention studies using satisfaction as an outcome from 1990 to 2005. Reviewing 24,423 citations yielded 21 relevant qualitative studies, four systematic reviews, and eight additional intervention studies. The qualitative literature described the domains of accessibility and coordination; competence, including symptom management; communication and education; emotional support and personalization of care; and support of patients' decision-making. For collaboration and consultation interventions, eight of 13 studies showed a significant effect o…
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Palliative sedation: a review of the research literature.
The overall aim of this paper is to systematically review the following important aspects of palliative sedation: prevalence, indications, survival, medication, food and fluid intake, decision making, attitudes of physicians, family experiences, and efficacy and safety. A thorough search of different databases was conducted for pertinent research articles published from 1966 to June 2007. The following keywords were used: end of life, sedation, terminal sedation, palliative sedation, refractory symptoms, and palliative care. Language of the articles was limited to English, French, German, and Dutch. Papers reporting solely on the sedatives used in palliative care, without explicitly reporting the prevalence or intensity of sedation, and papers not reporting on primary research (such as reviews or theoretical articles) were excluded. Methodological quality was assessed according to the cr…
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Seriously ill patients' discussions of preparation and life completion: an intervention to assist with transition at the end of life.
Objective: Patients approaching the end of life not only face challenges to physical well-being but also threats to emotional and spiritual integrity. Yet, identifying appropriate, effective, and brief interventions to address those concerns has proven elusive. We developed an intervention based on life review and emotional disclosure literatures and conducted a pilot study to determine feasibility and acceptability. This article presents qualitative intervention responses.
Method: We conducted a three-armed randomized control trial to evaluate the effects of preparation and life completion discussion on health outcomes in patients with advanced serious illness. Hospice-eligible subjects were randomly assigned to one of three groups: (1) intervention (life completion discussion intervention), (2) attention control (relaxation meditation), and control (no intervention). Subjects in the in…
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Blume ED, Balkin EM, Aiyagari R, Ziniel S, Beke DM, Thiagarajan R, Taylor L, Kulik T, Pituch K, Wolfe J (2014)cohort or longitudinalMEDLINE-indexed journal, not yet read by usPediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies92 citations Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*.
Objective: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease.
Design: Cross-sectional multicenter survey study of bereaved parents.
Setting: Two tertiary care pediatric hospitals.
Subjects: Parents of children younger than 21 years with primary cardiac diagnoses who died in the hospital 9 months to 4 years before the survey date. Parents were excluded if they were non-English speakers or had previously denied permission to contact.
Intervention: The Survey for Caring for Children with Advanced Heart Disease was developed, piloted, and then sent to parents of all children who died at two sites.
Measurements and main results: Fifty bereaved parents responded (39% response rate) a mean of 2.7 years after their child's death. Median age at death was 6 months (3.6 d to 20.4 yr). At end-of-life, 86% of children were intubated and 46% w…
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Sinclair S (2011)cohort or longitudinalMEDLINE-indexed journal, not yet read by usCMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne74 citations Impact of death and dying on the personal lives and practices of palliative and hospice care professionals.
Background Working within the landscape of death and dying, professionals in palliative and hospice care provide insight into the nature of mortality that may be of benefit to individuals facing the end of life. Much less is known about how these professionals incorporate these experiences into their personal lives and clinical practices. Methods This ethnographic inquiry used semi-structured interviews and participant observation to elicit an in-depth understanding of the impact of death and dying on the personal lives of national key leaders (n = 6) and frontline clinicians (n = 24) involved in end-of-life care in Canada. Analysis of findings occurred in the field through constant comparative method and member checking, with more formal levels of analysis occurring after the data-collection phase. Results Eleven specific themes, organized under three overarching categories (past, prese…
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Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study.
Background: Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients.
Methods/design: Mortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal question…
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Cultural Factors Influencing Advance Care Planning in Progressive, Incurable Disease: A Systematic Review With Narrative Synthesis.
Context: Advance care planning (ACP) can improve end-of-life outcomes, but low uptake indicates it is less acceptable to patients of some cultural backgrounds.
Objectives: The objectives of this study were to explore how cultural factors influence ACP for patients with progressive, incurable disease and how ACP might be made cross-culturally appropriate.
Method: We conducted a systematic literature review using narrative synthesis. Protocol was registered prospectively (PROSPERO CRD42017060441). Key words and subject headings of six databases (AMED, PsycINFO, Embase, Ovid MEDLINE, CINAHL, and Cochrane) were searched without time restrictions. Eligible studies reported original research published in full that included adult participants with progressive, incurable disease or their formal or informal caregivers. Study quality was assessed using the Mixed Methods Appraisal Tool.
Results: Ei…
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The Effectiveness of Advance Care Planning in Improving End-of-Life Outcomes for People With Dementia and Their Carers: A Systematic Review and Critical Discussion.
Context: End-of-life care for people with dementia can be poor, involving emergency hospital admissions, burdensome treatments of uncertain value, and undertreatment of pain and other symptoms. Advance care planning (ACP) is identified, in England and elsewhere, as a means of improving end-of-life outcomes for people with dementia and their carers.
Objective: To systematically and critically review empirical evidence concerning the effectiveness of ACP in improving end-of-life outcomes for people with dementia and their carers.
Methods: Systematic searches of academic databases (CINAHL Plus with full text, PsycINFO, SocINDEX with full text, and PubMed) were conducted to identify research studies, published between January 2000-January 2017 and involving statistical methods, in which ACP is an intervention or independent variable, and in which end-of-life outcomes for people with dementia…
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Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making.
Background: End-of-life decisions are frequently made by patients' surrogates. Race and ethnicity may affect such decision making. Few studies have described how different racial/ethnic groups experience end-of-life surrogate decision making.
Objectives: To describe the self-reported experience the self-reported experience of African-American, Caucasian, and Hispanic surrogate decision makers of seriously ill patients and to examine the relationship of race, ethnicity, and culture to that experience.
Design: Purposive sample to include racial/ethnic minorities in a qualitative study using focus group interviews.
Participants: The participants of the study were 44 experienced, mostly female, surrogate decision makers for older veterans.
Approach: Transcripts were qualitatively analyzed to identify major themes, with particular attention to themes that might be unique to each of the three …
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Improving residents' end-of-life communication skills with a short retreat: a randomized controlled trial.
Background: Internal medicine residents are largely unprepared to carry out end-of-life (EOL) conversations. There is evidence that these skills can be taught, but data from randomized controlled trials are lacking.
Purpose: We studied whether a day-long communication skills training retreat would lead to enhanced performance of and confidence with specific EOL conversations. We also studied the effect of the retreat on residents' ability to respond to patient emotions.
Methods: PGY-2 resident volunteers were randomly assigned to a retreat group or a control group. The retreat involved a combination of teaching styles and skills practice with standardized patients. All participants completed questionnaires and were evaluated carrying out two types of conversations (breaking bad news or discussing direction of care) with a standardized patient before (T1) and after (T2) the intervention p…
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Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial.
Background: Significant palliative care intervention has focused on physical pain and symptom control; yet less empirical evidence supports efforts to address the psychosocial and spiritual dimensions of experience.
Objective: To evaluate the impact of an intervention (Outlook) that promotes discussions of end-of-life preparation and completion on health outcomes in dying persons, including pain and symptoms, physical function, emotional function (anxiety and depression), spiritual well-being, and quality of life at the end of life.
Design: A three-arm pilot randomized control trial. Subjects were recruited from inpatient and outpatient hospital, palliative care, and hospice settings. Intervention subjects met with a facilitator three times and discussed issues related to life review, forgiveness, and heritage and legacy. Attention control subjects met with a facilitator three times and …
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Does palliative care improve quality? A survey of bereaved family members.
Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S. hospitals, the impact of hospital palliative care consultation programs on the quality of care received by family members is not well understood. We conducted prospective quantitative telephonic interviews of family members of patients who died at Mount Sinai Medical Center between April and December 2005 using the validated "After-Death Bereaved Family Member Interview," to assess quality of medical care at the end of life. Multivariable techniques were used to compare family satisfaction of palliative care patients vs. usual care patients controlling for age, race (white vs. nonwhite), diagnosis (cancer vs. noncancer), socioeconomic status (Med…
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Family member satisfaction with end-of-life decision making in the ICU.
Rationale: Families of ICU patients may be at risk for increased psychological morbidity due to end-of-life decision making. The identification of chart-based quality indicators of palliative care that predict family satisfaction with decision making may help to guide interventions to improve decision making and family outcomes.
Objective: To determine patient and family characteristics and chart the documentation of processes of care that are associated with increased family satisfaction with end-of-life decision making for ICU patients.
Methods: We conducted a cohort study of ICU patients dying in 10 medical centers in the Seattle-Tacoma area.
Measurement: Outcomes from family surveys included summary scores for family satisfaction with decision making and a single-item score that indicated feeling supported during decision making. Predictor variables were obtained from surveys and cha…
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Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement.
Objective: The aim of family focused grief therapy is to reduce the morbid effects of grief among families at risk of poor psychosocial outcome. It commences during palliative care of terminally ill patients and continues into bereavement. The authors report a randomized, controlled trial.
Method: Using the Family Relationships Index, the authors screened 257 families of patients dying from cancer: 183 (71%) were at risk, and 81 of those (44%) participated in the trial. They were randomly assigned (in a 2:1 ratio) to family focused grief therapy (53 families, 233 individuals) or a control condition (28 families, 130 individuals). Assessments occurred at baseline and 6 and 13 months after the patient's death. The primary outcome measures were the Brief Symptom Inventory, Beck Depression Inventory, and Social Adjustment Scale. The Family Assessment Device was a secondary outcome measure. A…
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Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, Morton SC, Hughes RG, Hilton LK, Maglione M, Rhodes SL, Rolon C, Sun VC, Shekelle PG (2008)systematic reviewMEDLINE-indexed journal, not yet read by usAnnals of internal medicine365 citations Evidence for improving palliative care at the end of life: a systematic review.
Background: Many persons and their families are burdened by serious chronic illness in late life. How to best support quality of life is an important consideration for care.
Purpose: To assess evidence about interventions to improve palliative and end-of-life care.
Data sources: English-language citations (January 1990 to November 2005) from MEDLINE, the Database of Abstracts of Reviews of Effects, the National Consensus Project for Quality Palliative Care bibliography, and November 2005 to January 2007 updates from expert reviews and literature surveillance.
Study selection: Systematic reviews that addressed "end of life," including terminal illness (for example, advanced cancer) and chronic, eventually fatal illness with ambiguous prognosis (for example, advanced dementia), and intervention studies (randomized and nonrandomized designs) that addressed pain, dyspnea, depression, advance…
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Sobanski PZ, Alt-Epping B, Currow DC, Goodlin SJ, Grodzicki T, Hogg K, Janssen DJA, Johnson MJ, Krajnik M, Leget C, Martínez-Sellés M, Moroni M, Mueller PS, Ryder M, Simon ST, Stowe E, Larkin PJ (2020)guidelineMEDLINE-indexed journal, not yet read by usCardiovascular research134 citations Palliative care for people living with heart failure: European Association for Palliative Care Task Force expert position statement.
Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social, or spiritual nature. This document encourages the use of validated assessment tools to recognize such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific a…
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