End of life care and the approach of death.
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151 to 175 of 969A systematic review of religious beliefs about major end-of-life issues in the five major world religions.
Objective: The objective of this study was to examine the religious/spiritual beliefs of followers of the five major world religions about frequently encountered medical situations at the end of life (EoL).
Method: This was a systematic review of observational studies on the religious aspects of commonly encountered EoL situations. The databases used for retrieving studies were: Ovid MEDLINE In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus. Observational studies, including surveys from healthcare providers or the general population, and case studies were included for review. Articles written from a purely theoretical or philosophical perspective were excluded.
Results: Our search strategy generated 968 references, 40 of which were included for r…
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Factors associated with family satisfaction with end-of-life care in the ICU: a systematic review.
Background: Family satisfaction with end-of-life care in the ICU has not previously been systematically reviewed. Our objective was to perform a review, synthesizing published data identifying factors associated with family satisfaction with end-of-life care in critically ill adult populations.
Methods: The following electronic databases were searched: MEDLINE (Medical Literature Analysis and Retrieval System Online), MEDLINE Updated, EMBASE (Excerpta Medical Database), CINAHL (Cumulative Index to Nursing and Allied Health Literature), PsycInfo, and PubMed. Two authors reviewed retrieved titles and abstracts. Studies describing nonadult and non-ICU populations or not addressing end-of-life care, family satisfaction, or factors affecting satisfaction were excluded. The remaining articles underwent full review and data extraction by two authors. Quality was assessed using a checklist based…
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Stability of end-of-life preferences: a systematic review of the evidence.
Importance: Policies and practices that promote advance care planning and advance directive completion implicitly assume that patients' choices for end-of-life (EOL) care are stable over time, even with changes in health status.
Objective: To systematically evaluate the evidence on the stability of EOL preferences over time and with changes in health status.
Evidence review: We searched for longitudinal studies of patients' preferences for EOL care in PubMed, EMBASE, and using citation review. Studies restricted to preferences regarding the place of care at the EOL were excluded.
Findings: A total of 296 articles were assessed for eligibility, and 59 met inclusion criteria. Twenty-four articles had sufficient data to extract or calculate the percentage of individuals with stable preferences or the percentage of total preferences that were stable over time. In 17 studies (71%) more than 7…
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Systematic review of supportive care needs in patients with primary malignant brain tumors.
In adults, primary malignant brain tumors (PMBT) are rare, but they have a devastating impact and the chances for survival are limited. UK clinical guidance on supportive care for patients with brain and central nervous system tumors was published in 2006 and relied on very limited evidence. The current article reviews literature from 2005 through 2011 on the psychosocial and supportive needs of patients with PMBT and their families or caregivers. Searches were conducted in PubMed, Web of Science, Psychinfo, Cochrane, Scopus, ASSIA, and Sciencedirect. The search initially yielded 6220 articles, of which 60 were found to be eligible (1%). Eleven qualitative and 49 quantitative studies are reviewed here and mapped onto the structure of the existing UK clinical guidance. Studies suggest rates of depression and anxiety up to 48% in patients and up to 40% in caregivers, with many unmet needs …
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Wicher CP, Meeker MA (2012)systematic reviewMEDLINE-indexed journal, not yet read by usJournal of health care for the poor and underserved94 citations What influences African American end-of-life preferences?
Background: The U.S. population is aging and increasingly culturally diverse. The challenges of an aging population desiring a good end to their lives combined with soaring costs for medical care serve as a mandate for providers to be aware of both patient preferences and other factors influencing decision-making at the end of life.
Methods: Systematic review of published research studies examining African American preferences related to end-of-life care and decision-making.
Findings: There are well documented differences in preferences for end-of-life care and utilization of services between non-Hispanic Whites and African Americans. African Americans do not use advance care planning (ACP) documents or hospice to the same extent as non-Hispanic Whites, and, even after controlling for income and access, the difference is significant. Many African Americans choose aggressive life-sustaini…
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Mularski RA, Dy SM, Shugarman LR, Wilkinson AM, Lynn J, Shekelle PG, Morton SC, Sun VC, Hughes RG, Hilton LK, Maglione M, Rhodes SL, Rolon C, Lorenz KA (2007)systematic reviewMEDLINE-indexed journal, not yet read by usHealth services research145 citations A systematic review of measures of end-of-life care and its outcomes.
Objective: To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.
Data sources: English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care.
Study design: Systematic review of end-of-life care literature.
Extraction methods: Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies.
Principal findings: Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant…
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Communication between physicians and nurses as a target for improving end-of-life care in the intensive care unit: challenges and opportunities for moving forward.
Our objective was to discuss obstacles and barriers to effective communication and collaboration regarding end-of-life issues between intensive care unit nurses and physicians. To evaluate practical interventions for improving communication and collaboration, we undertook a systematic literature review. An increase in shared decision making can result from a better understanding and respect for the perspectives and burdens felt by other caregivers. Intensive care unit nurses value their contributions to end-of-life decision making and want to have a more active role. Increased collaboration and communication can result in more appropriate care and increased physician/nurse, patient, and family satisfaction. Recommendations for improvement in communication between intensive care unit physicians and nurses include use of joint grand rounds, patient care seminars, and interprofessional dial…
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Traditional expectations versus US realities: first- and second-generation Asian Indian perspectives on end-of-life care.
Background: Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US.
Objective: To examine the perspectives of first- and second-generation South Asians living in the US regarding end-of-life care.
Design: Focus group study. Discussions explored participant preferences and experiences with family members facing the end of life.
Participants: Twelve first-generation and 11 second-generation self-identified Asian Indians living in the mid-Atlantic region.
Approach: Content analysis of focus group transcripts.
Results: First-generation participants ranged in age from 41 to 76 years and were evenly split by gender. Second-generation participants ranged in age from 23 to 36 years and included seven women and four men. All participants were hi…
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Three nursing home residents speak about meaning at the end of life.
This article provides a deeper understanding of how meaning can be created in everyday life at a nursing home. It is based on a primary study concerning dignity involving 12 older people living in two nursing homes in Sweden. A secondary analysis was carried out on data obtained from three of the primary participants interviewed over a period of time (18-24 months), with a total of 12 interviews carried out using an inductive hermeneutic approach. The study reveals that sources of meaning were created by having a sense of: physical capability, cognitive capability, being needed, and belonging. Meaning was created through inner dialogue, communication and relationships with others. A second finding is that the experience of meaning can sometimes be hard to realize.
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Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia.
Objective: For many nursing home patients in the advanced stages of dementia, a decision to start or forgo treatment has to be taken at the end of their life. It is very important for the peace of mind of all involved in such decision-making that there is agreement on which decision is in the best interest of the patient. It is thus important to investigate the attitude of physicians, nurses and relatives towards medical end-of-life decisions concerning patients with dementia, so that the policy in nursing homes can be tuned to stimulate dialogue and understanding between all parties.
Methods: Fifteen statements about artificial nutrition and hydration (ANH), advance directives, hastening death, self-determination and euthanasia, and nursing home policy were presented to physicians, nurses and relatives of nursing home patients suffering from dementia.
Results: In general, physicians, nu…
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El-Jawahri A, Paasche-Orlow MK, Matlock D, Stevenson LW, Lewis EF, Stewart G, Semigran M, Chang Y, Parks K, Walker-Corkery ES, Temel JS, Bohossian H, Ooi H, Mann E, Volandes AE (2016)randomised controlled trialMEDLINE-indexed journal, not yet read by usCirculation88 citations Randomized, Controlled Trial of an Advance Care Planning Video Decision Support Tool for Patients With Advanced Heart Failure.
Background: Conversations about goals of care and cardiopulmonary resuscitation (CPR)/intubation for patients with advanced heart failure can be difficult. This study examined the impact of a video decision support tool and patient checklist on advance care planning for patients with heart failure.
Methods: This was a multisite, randomized, controlled trial of a video-assisted intervention and advance care planning checklist versus a verbal description in 246 patients ≥64 years of age with heart failure and an estimated likelihood of death of >50% within 2 years. Intervention participants received a verbal description for goals of care (life-prolonging care, limited care, and comfort care) and CPR/intubation plus a 6-minute video depicting the 3 levels of care, CPR/intubation, and an advance care planning checklist. Control subjects received only the verbal description. The primary analy…
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Breitbart W, Poppito S, Rosenfeld B, Vickers AJ, Li Y, Abbey J, Olden M, Pessin H, Lichtenthal W, Sjoberg D, Cassileth BR (2012)randomised controlled trialMEDLINE-indexed journal, not yet read by usJournal of clinical oncology : official journal of the American Society of Clinical Oncology259 citations Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer.
Purpose: Spiritual well-being and sense of meaning are important concerns for clinicians who care for patients with cancer. We developed Individual Meaning-Centered Psychotherapy (IMCP) to address the need for brief interventions targeting spiritual well-being and meaning for patients with advanced cancer.
Patients and methods: Patients with stage III or IV cancer (N = 120) were randomly assigned to seven sessions of either IMCP or therapeutic massage (TM). Patients were assessed before and after completing the intervention and 2 months postintervention. Primary outcome measures assessed spiritual well-being and quality of life; secondary outcomes included anxiety, depression, hopelessness, symptom burden, and symptom-related distress.
Results: Of the 120 participants randomly assigned, 78 (65%) completed the post-treatment assessment and 67 (56%) completed the 2-month follow-up. At the …
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Bakitas M, Lyons KD, Hegel MT, Balan S, Barnett KN, Brokaw FC, Byock IR, Hull JG, Li Z, McKinstry E, Seville JL, Ahles TA (2009)randomised controlled trialMEDLINE-indexed journal, not yet read by usPalliative & supportive care141 citations The project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: baseline findings, methodological challenges, and solutions.
Objective: There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues.
Methods: Half of the participants recruited from our rural U.S. comprehensive cancer center and affiliated clinics were randomly assigned to a phone-based, nurse-led educational, care coordination palliative care intervention model. Intervention services were provided to half of the participants weekly for the first month and then monthly until death, including bereavement follow-up call to the caregiver. The ot…
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Bakitas M, Lyons KD, Hegel MT, Balan S, Brokaw FC, Seville J, Hull JG, Li Z, Tosteson TD, Byock IR, Ahles TA (2009)randomised controlled trialMEDLINE-indexed journal, not yet read by usJAMA1,314 citations Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial.
Context: There are few randomized controlled trials on the effectiveness of palliative care interventions to improve the care of patients with advanced cancer.
Objective: To determine the effect of a nursing-led intervention on quality of life, symptom intensity, mood, and resource use in patients with advanced cancer.
Design, setting, and participants: Randomized controlled trial conducted from November 2003 through May 2008 of 322 patients with advanced cancer in a rural, National Cancer Institute-designated comprehensive cancer center in New Hampshire and affiliated outreach clinics and a VA medical center in Vermont.
Interventions: A multicomponent, psychoeducational intervention (Project ENABLE [Educate, Nurture, Advise, Before Life Ends]) conducted by advanced practice nurses consisting of 4 weekly educational sessions and monthly follow-up sessions until death or study completion …
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Zimmermann C (2012)MEDLINE-indexed journal, not yet read by usSocial science & medicine (1982)75 citations Acceptance of dying: a discourse analysis of palliative care literature.
The subject of death denial in the West has been examined extensively in the sociological literature. However, there has not been a similar examination of its "opposite", the acceptance of death. In this study, I use the qualitative method of discourse analysis to examine the use of the term "acceptance" of dying in the palliative care literature from 1970 to 2001. A Medline search was performed by combining the text words "accept or acceptance" with the subject headings "terminal care or palliative care or hospice care", and restricting the search to English language articles in clinical journals discussing acceptance of death in adults. The 40 articles were coded and analysed using a critical discourse analysis method. This paper focuses on the theme of acceptance as integral to palliative care, which had subthemes of acceptance as a goal of care, personal acceptance of healthcare work…
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Barriers to referral to inpatient palliative care units in Japan: a qualitative survey with content analysis.
Objectives: We investigated the barriers to referral to inpatient palliative care units (PCUs) through a qualitative study across various sources of information, including terminal cancer patients, their families, physicians, and nurses.
Materials and methods: There were 63 participants, including 13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in palliative care and acute care cancer settings from five regional cancer institutes in Japan. Semi-structured interviews were conducted regarding barriers to referral to PCU, and data were analyzed by content analysis method.
Results: A total of 21 barriers were identified by content analysis. The leading barriers were (1) a negative image of PCUs by patients and families (n = 39), (2) delay of termination of anti-cancer treatment by physicians in the general wards (n = 24), (3) unwillingness to end anti-cancer trea…
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Using a pilot curriculum in geriatric palliative care to improve communication skills among medical students.
The purpose of this study was to assess the impact of an elective geriatric palliative care course on medical students' attitudes, knowledge, and behaviors regarding communication with terminally ill patients. Surveys were administered at the beginning and end of the elective. Despite a significant increase in knowledge about geriatric and palliative medicine (F=24.80; P<.001), there were no significant changes in students' self-reported behaviors when applying curriculum-based communication strategies. However, the qualitative analysis of open-ended questions showed that the curriculum intervention did result in an improvement in empowering message strategies for breaking bad news. The evaluation of the end-of-life curriculum needs to exceed the measurement of attitudes and knowledge and include behavioral assessment of end-of-life communication skills.
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Selman LE, Brighton LJ, Sinclair S, Karvinen I, Egan R, Speck P, Powell RA, Deskur-Smielecka E, Glajchen M, Adler S, Puchalski C, Hunter J, Gikaara N, Hope J, InSpirit Collaborative (2018)cohort or longitudinalMEDLINE-indexed journal, not yet read by usPalliative medicine159 citations Patients' and caregivers' needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries.
Background: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.
Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.
Design: Focus group study.
Setting/participants: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.
Results: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian.…
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Life values of elderly people suffering from incurable cancer: A literature review.
Objective: Due to aging Western societies, older patients suffering from incurable cancer will present themselves more often to health care professionals. To be of service to these severely ill elderly patients, more knowledge is needed on which life values are guiding them through their last phases of life. This review aims to describe which life values play an important part in the lives of elderly people suffering from incurable cancer.
Methods: We conducted a literature review with a structured search to identify empirical studies (January 1950-February 2016) using six databases.
Results: The analysis of thirty articles resulted in the extensive description of eight life values: comfort, continuity, humility, dignity, honesty, optimism, hope and preparedness.
Conclusion: Elderly patients suffering from incurable cancer use the abovementioned life values to give meaning to a life inte…
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Measuring death-related anxiety in advanced cancer: preliminary psychometrics of the Death and Dying Distress Scale.
The alleviation of distress associated with death and dying is a central goal of palliative care, despite the lack of routine measurement of this outcome. In this study, we introduce the Death and Dying Distress Scale (DADDS), a new, brief measure we have developed to assess death-related anxiety in advanced cancer and other palliative populations. We describe its preliminary psychometrics based on a sample of 33 patients with advanced or metastatic cancer. The DADDS broadly captures distress about the loss of time and opportunity, the process of death and dying, and its impact on others. The initial version of the scale has a one-factor structure and good internal reliability. Dying and death-related distress was positively associated with depression and negatively associated with spiritual, emotional, physical, and functional well-being, providing early evidence of construct validity. …
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Yaakobi E (2018)reviewMEDLINE-indexed journal, not yet read by usDeath studies1 citations Encounters with offspring help terminally ill adult patients cope with death anxiety.
This overview of recent work drawing on the theories of terror management and symbolic immortality suggests practical ways of helping the terminally ill to cope with death anxiety and its potential effects. The literature review shows that parenthood can act as an anxiety buffer mechanism against the fear of death but that individual differences, including attachment avoidance, moderate this association. Encounters with adult patients' offspring may help minimize fear of death, improve coping, and increase quality of life and emotional well-being. Practical suggestions for psychologists, social workers and physicians are presented.
matched on Terminal Care (mesh), Attitude to Death (mesh), Terminally Ill (mesh), terminal illness (text)
Goals of care toward the end of life: a structured literature review.
Goals of care are often mentioned as an important component of end-of-life discussions, but there are diverse assessments regarding the type and number of goals that should be considered. To address this lack of consensus, we searched MEDLINE (1967-2007) for relevant articles and identified the number, phrasing, and type of goals they addressed. An iterative process of categorization resulted in a list of 6 practical, comprehensive goals: (1) be cured, (2) live longer, (3) improve or maintain function/quality of life/ independence, (4) be comfortable, (5) achieve life goals, and (6) provide support for family/caregiver. These goals can be used to articulate goal-oriented frameworks to guide decision making toward the end of life and thereby harmonize patients' treatment choices with their values and medical conditions.
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Current research findings on end-of-life decision making among racially or ethnically diverse groups.
Purpose: We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research.
Design and methods: We identified 33 empirical studies in which race or ethnicity was investigated as either a variable predicting treatment preferences or choices, where racial or ethnic groups were compared in their end-of-life decisions, or where the end-of-life decision making of a single minority group was studied in depth. We conducted a narrative review and identified four topical domains of study: advance directives; life support; disclosure and communication of diagnosis, prognosis, and preferences; and designation of primary decision makers.
Results: Non-White racial or ethnic groups generally lacked knowledge of advance directives and were less likely than Whites to support advance directiv…
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I don't want to be the one saying 'we should just let him die': intrapersonal tensions experienced by surrogate decision makers in the ICU.
Background: Although numerous studies have addressed external factors associated with difficulty in surrogate decision making, intrapersonal sources of tension are an important element of decision making that have received little attention.
Objective: To characterize key intrapersonal tensions experienced by surrogate decision makers in the intensive care unit (ICU), and explore associated coping strategies.
Design: Qualitative interview study.
Participants: Thirty surrogates from five ICUs at two hospitals in Pittsburgh, Pennsylvania, who were actively involved in making life-sustaining treatment decisions for a critically ill loved one.
Approach: We conducted in-depth, semi-structured interviews with surrogates, focused on intrapersonal tensions, role challenges, and coping strategies. We analyzed transcripts using constant comparative methods.
Key results: Surrogates experience signif…
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El-Jawahri A, LeBlanc TW, Kavanaugh A, Webb JA, Jackson VA, Campbell TC, O'Connor N, Luger SM, Gafford E, Gustin J, Bhatnagar B, Walker AR, Fathi AT, Brunner AM, Hobbs GS, Nicholson S, Davis D, Addis H, Vaughn D, Horick N, Greer JA, Temel JS (2021)randomised controlled trialMEDLINE-indexed journal, not yet read by usJAMA oncology151 citations Effectiveness of Integrated Palliative and Oncology Care for Patients With Acute Myeloid Leukemia: A Randomized Clinical Trial.
Importance: Patients with acute myeloid leukemia (AML) receiving intensive chemotherapy experience substantial decline in their quality of life (QOL) and mood during their hospitalization for induction chemotherapy and often receive aggressive care at the end of life (EOL). However, the role of specialty palliative care for improving the QOL and care for this population is currently unknown.
Objective: To assess the effect of integrated palliative and oncology care (IPC) on patient-reported and EOL outcomes in patients with AML.
Design, setting, and participants: We conducted a multisite randomized clinical trial of IPC (n = 86) vs usual care (UC) (n = 74) for patients with AML undergoing intensive chemotherapy. Data were collected from January 2017 through July 2019 at 4 tertiary care academic hospitals in the United States.
Interventions: Patients assigned to IPC were seen by palliativ…
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