End of life care and the approach of death.
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76 to 100 of 969Communication between healthcare professionals and relatives of patients approaching the end-of-life: A systematic review of qualitative evidence.
Background: Effective communication between healthcare professionals and relatives of patients approaching the end-of-life is vital to ensure patients have a 'good death'. To improve communication, it is important to first identify how this is currently being accomplished.
Aim: To review qualitative evidence concerning characteristics of communication about prognosis and end-of-life care between healthcare professionals and relatives of patients approaching the end-of-life.
Design: Qualitative systematic review (PROSPERO registration CRD42017065560) using thematic synthesis. Peer-reviewed, English language articles exploring the content of conversations and how participants communicated were included. No date restrictions were applied. Quality of included studies was appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research.
Data sources: An electr…
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Ahluwalia SC, Chen C, Raaen L, Motala A, Walling AM, Chamberlin M, O'Hanlon C, Larkin J, Lorenz K, Akinniranye O, Hempel S (2018)systematic reviewMEDLINE-indexed journal, not yet read by usJournal of pain and symptom management82 citations A Systematic Review in Support of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Fourth Edition.
Context: Palliative care continues to be a rapidly growing field aimed at improving quality of life for patients and their caregivers.
Objectives: The purpose of this review was to provide a synthesis of the evidence in palliative care to inform the fourth edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care.
Methods: Ten key review questions addressing eight content domains guided a systematic review focused on palliative care interventions. We searched eight databases in February 2018 for systematic reviews published in English from 2013, after the last edition of National Consensus Project guidelines was published, to present. Experienced literature reviewers screened, abstracted, and appraised data per a detailed protocol registered in PROSPERO. The quality of evidence was evaluated using the Grading of Recommendations, Assessment, Develo…
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Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences.
Background: End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of this review is to establish the strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia.
Design: Evidence synthesis including systematic reviews and primary studies. PROSPERO registration: CRD42018107718.
Data sources: PubMed, CINAHL Plus, SCOPUS, Social Care Online and Cochrane Library were searched (July 2018). No year limit applied. To be included, reviews had to evaluate effectiveness of ACP for people with dementia or report on views and experiences of ACP from the perspective of people with dementia, carers, or health and care professionals. Additional searches (September 2018) were conducted to identify recent primary studi…
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Associations Among End-of-Life Discussions, Health-Care Utilization, and Costs in Persons With Advanced Cancer: A Systematic Review.
Background: Aggressive end-of-life (EOL) care is associated with lower quality of life and greater regret about treatment decisions. Higher EOL costs are also associated with lower quality EOL care. Advance care planning and goals-of-care conversations ("EOL discussions") may influence EOL health-care utilization and costs among persons with cancer.
Objective: To describe associations among EOL discussions, health-care utilization and place of death, and costs in persons with advanced cancer and explore variation in study measures.
Methods: A systematic review was conducted using PubMed, Embase, and CINAHL. Twenty quantitative studies published between January 2012 and January 2019 were included.
Results: End-of-life discussions are associated with lower health-care costs in the last 30 days of life (median US$1048 vs US$23482; P < .001); lower likelihood of acute care at EOL (odds ratio…
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Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers.
Background: Patients with advanced cancer may benefit from end of life (EOL) planning, but there is evidence that their willingness and desire to engage in advance care planning (ACP) varies. The reasons for this remain poorly understood. Previous reviews on ACP most commonly report outcome measures related to medical interventions and type of care. Synthesis of the literature, which aims to illuminate the salient characteristics of ACP and investigates the psychological and social features of preparation for the EOL, is required.
Methods: We searched Medline, EMBASE, PsychINFO, CINAHL, and the Cochrane Central Register of Controlled Trials for studies on perceptions or experiences regarding ACP of adults with cancer, family, friends, or professionals caring for this group. Databases were searched from earliest records to 19 November 2014. A thematic analysis of the literature generated …
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Does facilitated Advance Care Planning reduce the costs of care near the end of life? Systematic review and ethical considerations.
Background: While there is increasing evidence that Advance Care Planning has the potential to strengthen patient autonomy and improve quality of care near the end of life, it remains unclear whether it could also reduce net costs of care.
Aim: This study aims to describe the cost implications of Advance Care Planning programmes and discusses ethical conflicts arising in this context.
Design: We conducted a systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement.
Data sources: We systematically searched the databases PubMed, NHS EED, EURONHEED, Cochrane Library and EconLit. We included empirical studies (no limitation to study type) that investigated the cost implications of Advance Care Planning programmes involving professionally facilitated end-of-life discussions.
Results and discussion: Seven studies met our inclusion criteria. Fou…
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A systematic review of evidence for end-of-life communication interventions: Who do they target, how are they structured and do they work?
Objective: To identify and synthesise evidence for interventions targeting end-of-life communication.
Methods: Database, reference list and author searches were conducted to identify evaluations of end-of-life communication-focussed interventions. Data were extracted, synthesised and QUALSYST quality analyses were performed.
Results: Forty-five studies met inclusion criteria. Interventions targeted patients (n=6), caregivers (n=3), healthcare professionals (HCPs n=24) and multiple stakeholders (n=12). Interventions took various forms including communication skills training, education, advance care planning and structured practice changes. Substantial heterogeneity in study designs, outcomes, settings and measures was apparent and study quality was variable.
Conclusion: A substantial number of end-of-life communication interventions have been evaluated. Interventions have particularly tar…
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Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies.
Context: Advance Care Plans (ACPs) enable patients to discuss and negotiate their preferences for the future including treatment options at the end of life. Their implementation poses significant challenges.
Objective: To investigate barriers and facilitators to the implementation of ACPs, focusing on their workability and integration in clinical practice.
Design: An explanatory systematic review of qualitative implementation studies.
Data sources: Empirical studies that reported interventions designed to support ACP in healthcare. Web of Knowledge, Ovid MEDLINE, CINAHL, PsycINFO, British Nursing Index and PubMed databases were searched.
Methods: Direct content analysis, using Normalization Process Theory, to identify and characterise relevant components of implementation processes.
Results: 13 papers identified from 166 abstracts were included in the review. Key factors facilitating imp…
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van der Steen JT, van Soest-Poortvliet MC, Hallie-Heierman M, Onwuteaka-Philipsen BD, Deliens L, de Boer ME, Van den Block L, van Uden N, Hertogh CM, de Vet HC (2014)systematic reviewMEDLINE-indexed journal, not yet read by usJournal of Alzheimer's disease : JAD126 citations Factors associated with initiation of advance care planning in dementia: a systematic review.
Background: Planning ahead may be particularly relevant in dementia considering patients' cognitive decline and difficulty to predict the course of the dementia.
Objective: To identify factors associated with initiation of advance care planning (ACP) regarding end-of-life issues in dementia.
Methods: Systematic review of the PubMed, Embase, Cinahl, Psychinfo, and Cochrane databases until January 2013. We included articles reporting on empirical research, identifying factors related to initiation of ACP defined as starting a discussion, starting the decision making, or having a documented patient-written advance directive.
Results: Of 4,647 unique articles, we assessed 178 as full-texts, and included 33. Most designs (64%) were qualitative; 42% limited to moderate to severe, and 6% to mild to moderate stages. Perspectives varied: family (33%), professional caregivers (24%), patient (15%),…
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Sharp T, Moran E, Kuhn I, Barclay S (2013)systematic reviewMEDLINE-indexed journal, not yet read by usThe British journal of general practice : the journal of the Royal College of General Practitioners188 citations Do the elderly have a voice? Advance care planning discussions with frail and older individuals: a systematic literature review and narrative synthesis.
Background: Recent years have seen marked improvements in end-of-life care, however concerns have been expressed that services are focused on the needs of patients with cancer. This review focuses on conversations about end-of-life care with frail and older people who have no main overriding diagnosis who are estimated to account for around 40% of deaths.
Aim: To investigate the attitudes of the public and healthcare professionals to advance care planning discussions with frail and older people.
Design and setting: Systematic literature review and narrative synthesis.
Method: Articles that related to frail or older individuals and either advance care plans or discussions on end-of-life care were included. Studies of specific conditions or that focused on prognosis, capacity, or resuscitation decisions were excluded.
Results: While a significant minority of frail older individuals would f…
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Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers.
Background: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world.
Objectives: 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness.
Search methods: We searched 12 electronic databases up to November 2012. We checked the r…
matched on Palliative Care (mesh), Attitude to Death (mesh)
Relationship Between Spirituality, Meaning in Life, Psychological Distress, Wish for Hastened Death, and Their Influence on Quality of Life in Palliative Care Patients.
Context: Spiritual, existential, and psychological issues represent central components of quality of life (QOL) in palliative care. A better understanding of the dynamic nature underlying these components is essential for the development of interventions tailored to the palliative context.
Objectives: The aims were to explore 1) the relationship between spirituality, meaning in life, wishes for hastened death and psychological distress in palliative patients and 2) the extent to which these nonphysical determinants influence QOL.
Methods: A cross-sectional study involving face-to-face interviews with Swiss palliative patients was performed, including the Schedule for Meaning in Life Evaluation (SMILE), the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp), the Idler Index of Religiosity (IIR), the Hospital Anxiety and Depression Scale (HADS), and the …
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Factors important to patients' quality of life at the end of life.
Background: When curative treatments are no longer options for patients dying of cancer, the focus of care often turns from prolonging life to promoting quality of life (QOL). Few data exist on what predicts better QOL at the end of life (EOL) for advanced cancer patients. The purpose of this study was to determine the factors that most influence QOL at the EOL, thereby identifying promising targets for interventions to promote QOL at the EOL.
Methods: Coping With Cancer is a US multisite, prospective, longitudinal cohort study of 396 advanced cancer patients and their informal caregivers who were enrolled from September 1, 2002, through February 28, 2008. Patients were followed up from enrollment to death a median of 4.1 months later. Patient QOL in the last week of life was a primary outcome of Coping With Cancer and the present report.
Results: The following set of 9 factors, preceded…
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Carr D (2011)cohort or longitudinalMEDLINE-indexed journal, not yet read by usOmega94 citations Racial differences in end-of-life planning: why don't Blacks and Latinos prepare for the inevitable?.
I evaluate the extent to which ethnic disparities in advance care planning reflect cultural and religious attitudes and experience with the painful deaths of loved ones. Data are from a sample of 293 chronically ill older adults who are seeking care at one of two large medical centers in urban New Jersey. Blacks and Hispanics are significantly less likely than Whites to have a living will, a durable power of attorney for health care (DPAHC), and to have discussed their end of life treatment preferences. Multivariate analyses reveal that the Black-White gap in advance care planning is largely accounted for by Blacks' belief that God controls the timing and nature of death. The Hispanic-White gap is partially accounted for by the belief that one's illness negatively affects one's family. Ethnic disparities are starkest for living will and DPAHC use, and less pronounced for discussions. Imp…
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Chan HY, Pang SM (2010)cohort or longitudinalMEDLINE-indexed journal, not yet read by usJournal of clinical nursing91 citations Let me talk--an advance care planning programme for frail nursing home residents.
Aims and objectives: This study attempted to test the plausibility of engaging frail nursing home residents in advance care planning (ACP).
Background: Advance care planning fosters communication among individuals, family and health professionals regarding end-of-life care. Yet, such practice seldom takes place in a timely fashion because of its sensitive nature; thus, the concerns of these residents are often left unattended.
Design: This was a one-year quasi-experimental study to test the feasibility of the Let Me Talk ACP programme, with its design being inspired by literature and our earlier work, among frail nursing home residents.
Method: Three assessments were conducted at six-month intervals to monitor the programme effects. The storytelling approach, which allowed participants to thread together their past, present and future, was the key feature of the programme.
Results: Findi…
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Loggers ET, Maciejewski PK, Paulk E, DeSanto-Madeya S, Nilsson M, Viswanath K, Wright AA, Balboni TA, Temel J, Stieglitz H, Block S, Prigerson HG (2009)cohort or longitudinalMEDLINE-indexed journal, not yet read by usJournal of clinical oncology : official journal of the American Society of Clinical Oncology162 citations Racial differences in predictors of intensive end-of-life care in patients with advanced cancer.
Purpose: Black patients are more likely than white patients to receive life-prolonging care near death. This study examined predictors of intensive end-of-life (EOL) care for black and white advanced cancer patients.
Patients and methods: Three hundred two self-reported black (n = 68) and white (n = 234) patients with stage IV cancer and caregivers participated in a US multisite, prospective, interview-based cohort study from September 2002 to August 2008. Participants were observed until death, a median of 116 days from baseline. Patient-reported baseline predictors included EOL care preference, physician trust, EOL discussion, completion of a Do Not Resuscitate (DNR) order, and religious coping. Caregiver postmortem interviews provided information regarding EOL care received. Intensive EOL care was defined as resuscitation and/or ventilation followed by death in an intensive care unit.…
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Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life.
Purpose: Religion and spirituality play a role in coping with illness for many cancer patients. This study examined religiousness and spiritual support in advanced cancer patients of diverse racial/ethnic backgrounds and associations with quality of life (QOL), treatment preferences, and advance care planning.
Methods: The Coping With Cancer study is a federally funded, multi-institutional investigation examining factors associated with advanced cancer patient and caregiver well-being. Patients with an advanced cancer diagnosis and failure of first-line chemotherapy were interviewed at baseline regarding religiousness, spiritual support, QOL, treatment preferences, and advance care planning.
Results: Most (88%) of the study population (N = 230) considered religion to be at least somewhat important. Nearly half (47%) reported that their spiritual needs were minimally or not at all support…
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"Are you at peace?": one item to probe spiritual concerns at the end of life.
Background: Physicians may question their role in probing patients' spiritual distress and the practicality of addressing such issues in the time-limited clinical encounter. Yet, patients' spirituality often influences treatment choices during a course of serious illness. A practical, evidence-based approach to discussing spiritual concerns in a scope suitable to a physician-patient relationship may improve the quality of the clinical encounter.
Methods: Analysis of the construct of being "at peace" using a sample of patients with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease. Descriptive statistics were used to compare response distributions among patient subgroups. Construct validity of the concept of being "at peace" was evaluated by examining Spearman rank correlations between the item and existing spirituality and quality-of-life subscales.
Resu…
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Complicated Grief: Risk Factors, Protective Factors, and Interventions.
Complicated grief (CG) poses significant physical, psychological, and economic risks to bereaved family caregivers. An integrative review of the literature published 2009-2018 on CG associated with caregiving was performed using PubMed, PsychINFO, and Web of Science. The search returned 1428 articles, of which 32 were included in the review. Sixteen studies described risk and protective factors and 16 described interventions for CG. Caregiver-related risk factors included fewer years of education, depression, anxiety, poor physical health, and maladaptive dependency and attachment traits. Additional risk factors included lower perceived social support, family conflict at end-of-life, and family having difficulty accepting death. Care recipient-related risk factors are younger age, fear of death, and place of death. Protective factors included hospice utilization in reducing fear of death…
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Cultural and religious considerations in pediatric palliative care.
Objective: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care.
Method: Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences C…
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The quality of dying and death.
During the past decade, research has examined definitions and conceptualizations of quality of dying and death in different populations. At the same time, there has been a call to clarify the distinctions between quality of dying and death and other end-of-life constructs. The purposes of this article are to (1) review research that examined definitions and conceptualizations of the quality of dying and death, (2) clarify the quality of dying and death construct and its distinction from quality of life and quality of care at the end of life, and (3) outline challenges that remain for health care professionals, researchers, and policy makers. Review of the literature revealed that the quality of dying and death construct is multidimensional, with 7 broad domains: physical experience, psychological experience, social experience, spiritual or existential experience, the nature of health car…
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Integration of palliative care into COVID-19 pandemic planning.
The COVID-19 pandemic is expected to surpass the healthcare system's capacity to provide intensive care to all patients who deteriorate as a result of the disease. This poses a unique challenge to healthcare teams of rationing care during pandemic when resources are scarce. Healthcare providers will need to acquire new skills in care decision making and effective symptom control for patients who do not receive life-saving measures. In this review, we describe some of the important palliative care considerations that need to be incorporated into COVID-19 pandemic planning. The main aspects to be considered include decision algorithms for rationing care, training on effective symptoms management, alternative delivery methods of palliative care services such as telemedicine and finally death and bereavement support for surviving family members who are likely to be isolated from their loved …
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Educational interventions to train healthcare professionals in end-of-life communication: a systematic review and meta-analysis.
Background: Practicing healthcare professionals and graduates exiting training programs are often ill-equipped to facilitate important discussions about end-of-life care with patients and their families. We conducted a systematic review to evaluate the effectiveness of educational interventions aimed at providing healthcare professionals with training in end-of-life communication skills, compared to usual curriculum.
Methods: We searched MEDLINE, Embase, CINAHL, ERIC and the Cochrane Central Register of Controlled Trials from the date of inception to July 2014 for randomized control trials (RCT) and prospective observational studies of educational training interventions to train healthcare professionals in end-of-life communication skills. To be eligible, interventions had to provide communication skills training related to end-of-life decision making; other interventions (e.g. breaking …
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Physician-related barriers to communication and patient- and family-centred decision-making towards the end of life in intensive care: a systematic review.
Introduction: Although many terminally ill people are admitted to an intensive care unit (ICU) at the end of life, their care is often inadequate because of poor communication by physicians and lack of patient- and family-centred care. The aim of this systematic literature review was to describe physician-related barriers to adequate communication within the team and with patients and families, as well as barriers to patient- and family-centred decision-making, towards the end of life in the ICU. We base our discussion and evaluation on the quality indicators for end-of-life care in the ICU developed by the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup.
Method: Four electronic databases (MEDLINE, Embase, CINAHL and PsycINFO) were searched, using controlled vocabulary and free text words, for potentially relevant records published between 2003 and 2013 in English…
matched on Terminal Care (mesh), end of life (text), terminal illness (text)
Assessing the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: a stepped wedge cluster trial.
Objectives: To test the impact on family carers of a Carer Support Needs Assessment Tool (CSNAT) intervention to facilitate carer-led assessment and support during end of life care.
Method: Mixed method, part-randomised, stepped wedge cluster trial with 6 palliative home care services comparing carers receiving the intervention with those receiving standard care. Postal survey with carers 4-5 months postbereavement measured adequacy of end of life support, current mental and physical health (Short Form 12 Health Survey SF-12), level of grief (Texas Revised Inventory of Grief, TRIG) and distress (Distress Thermometer, DT), place of death and carer satisfaction with place of death.
Results: Surveys were sent to 3260 (76%) carers of 4311 deceased patients; 681 (21%) were returned (N=333 control, N=348 intervention). Compared with controls, intervention carers had significantly lower levels …
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