End of life care and the approach of death.
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201 to 225 of 969Integration of palliative care in end-stage liver disease and liver transplantation.
Background: Patients with end-stage liver disease (ESLD) have a life-limiting illness that causes multiple distressing symptoms and negatively affects quality of life (QOL). This population traditionally has not had much attention within the palliative care community.
Discussion: This article provides an evidence-based review of palliative care issues that patients with ESLD and those awaiting liver transplant face, including approaches to prognosis, symptom management, advance care planning, and end-of-life care.
Conclusion: Tremendous opportunity exists to integrate palliative medicine into the care of these patients.
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Does palliative care improve outcomes for patients with incurable illness? A review of the evidence.
Patients with incurable illness experience considerable physical and psychological distress, which negatively impacts their quality of life. Palliative care clinicians primarily seek to alleviate suffering, enhance coping with symptoms, and enable informed decision making. In this article, we review the efficacy of various palliative care interventions to improve patients' quality of life, physical and psychological symptoms, satisfaction with care, family caregiver outcomes, health-service utilization, and quality of end-of-life care. We have identified 22 randomized studies that evaluate the efficacy of various palliative care interventions. Palliative care research has been hampered by methodological challenges related to attrition and missing data due to progressive illness and death. In addition, interventions to date have varied widely in the focus and extent of services, with only…
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Existential suffering in the palliative care setting: an integrated literature review.
Context: Existential and spiritual concerns in relation to palliative end-of-life care have received increasing attention over the past decade.
Objectives: To review the literature specifically related to existential suffering in palliative care in terms of the significance of existential suffering in end-of-life care, definitions, conceptual frameworks, and interventions.
Methods: A systematic approach was undertaken with the aim of identifying emerging themes in the literature. Databases using CINAHL (1980-2009), MEDLINE (1970-2009), and PsychINFO (1980-2009) and the search engine of Google Scholar were searched under the key words existential suffering, existential distress, existential pain, palliative and end of life care.
Results: The search yielded a total of 156 articles; 32% were peer-reviewed empirical research articles, 28% were peer-reviewed theoretical articles, and 14% were…
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End of life care for community dwelling older people with dementia: an integrated review.
Objective: To review the evidence for end-of-life care for community dwelling older people with dementia (including those resident in care homes).
Design: An integrated review synthesised the qualitative and quantitative evidence on end-of-life care for community dwelling older people with dementia. English language studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included. A user representative group informed decisions on the breadth of literature used. Each study selected was screened independently by two reviewers using a standardised check list.
Results: Sixty eight papers were included. Only 17% (12) exclusively concerned living and dying with dementia at home. Six studies included direct evidence from people with dementia. The studies grouped i…
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The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research.
Spirituality and spiritual care are gaining increasing attention but their potential contribution to palliative care remains unclear. The aim of this study was to synthesize qualitative literature on spirituality and spiritual care at the end of life using a systematic ('meta-study') review. Eleven patient articles and eight with healthcare providers were included, incorporating data from 178 patients and 116 healthcare providers, mainly from elderly White and Judaeo-Christian origin patients with cancer. Spirituality principally focused on relationships, rather than just meaning making, and was given as a relationship. Spirituality was a broader term that may or may not encompass religion. A 'spirit to spirit' framework for spiritual care-giving respects individual personhood. This was achieved in the way physical care was given, by focusing on presence, journeying together, listening, …
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Toward interventions to improve end-of-life care in the pediatric intensive care unit.
Although children account for only about 3% of all deaths that occur in the United States each year, these patients and their families have needs that are uniquely different from those of adult patients. To date, however, no research on interventions to improve end-of-life care in the pediatric intensive care unit (PICU) has been performed. This review seeks to facilitate and inform future interventional studies by summarizing existing descriptive data about end-of-life care in this setting. These data are organized around six domains that have been identified as critical to high-quality, family-centered care: 1) support of the family unit; 2) communication with the child and family about treatment goals and plans; 3) ethics and shared decision making; 4) relief of pain and other symptoms; 5) continuity of care; and 6) grief and bereavement support. These data are integrated and used to …
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Palliative care and pain management.
Palliative care aims to improve quality of life and relieve suffering for patients with advanced illness and those close to them by specifically addressing communication, symptom management, coordination of care, psychosocial and spiritual realms, grief and bereavement support, and legal and ethical concerns. It has an interdisciplinary focus and may co-exist with curative and life-prolonging treatment. Palliative care is a key component of appropriate, routine medical care, especially for clinicians caring for older adults. In revisiting Mrs. B, the many needs of a typical elderly patient are apparent, as are the gaps in the current level of care. A discussion of prognosis and goals of care is a potential starting point. This includes obtaining input from an oncologist with regard to treatment options for Mrs. B's metastatic breast cancer and her pathologic hip fracture. Soliciting her …
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Matsuyama R, Reddy S, Smith TJ (2006)reviewMEDLINE-indexed journal, not yet read by usJournal of clinical oncology : official journal of the American Society of Clinical Oncology247 citations Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer.
Purpose: The number of patients receiving chemotherapy near the end of life is increasing, as are concerns about goals of treatment, toxicity, and costs. We sought to determine the available sources of knowledge, the choices, and concerns of actual patients, and how patients balanced competing issues.
Methods: We used a literature search from 1980 to present.
Results: Available patient sources provide little information about prognosis, choices, alternatives, consequences, or how to choose. Many patients would choose chemotherapy for a small benefit in health outcomes, and for a smaller benefit than perceived by their health care providers for their own treatment. Adverse effects are less a concern for patients than for their well health care providers. There are no decision aids to assist patients with metastatic disease in making their choices, such as there are for adjuvant breast the…
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Hosie A, Phillips J, Lam L, Kochovska S, Noble B, Brassil M, Kurrle SE, Cumming A, Caplan GA, Chye R, Le B, Ely EW, Lawlor PG, Bush SH, Davis JM, Lovell M, Brown L, Fazekas B, Cheah SL, Edwards L, Agar M (2019)clinical trialMEDLINE-indexed journal, not yet read by usBMJ open8 citations Multicomponent non-pharmacological intervention to prevent delirium for hospitalised people with advanced cancer: study protocol for a phase II cluster randomised controlled trial.
Introduction: Delirium is a significant medical complication for hospitalised patients. Up to one-third of delirium episodes are preventable in older inpatients through non-pharmacological strategies that support essential human needs, such as physical and cognitive activity, sleep, hydration, vision and hearing. We hypothesised that a multicomponent intervention similarly may decrease delirium incidence, and/or its duration and severity, in inpatients with advanced cancer. Prior to a phase III trial, we aimed to determine if a multicomponent non-pharmacological delirium prevention intervention is feasible and acceptable for this specific inpatient group.
Methods and analysis: The study is a phase II cluster randomised wait-listed controlled trial involving inpatients with advanced cancer at four Australian palliative care inpatient units. Intervention sites will introduce delirium scree…
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Emergency Medicine Palliative Care Access (EMPallA): protocol for a multicentre randomised controlled trial comparing the effectiveness of specialty outpatient versus nurse-led telephonic palliative care of older adults with advanced illness.
Introduction: Emergency department (ED)-initiated palliative care has been shown to improve patient-centred outcomes in older adults with serious, life-limiting illnesses. However, the optimal modality for providing such interventions is unknown. This study aims to compare nurse-led telephonic case management to specialty outpatient palliative care for older adults with serious, life-limiting illness on: (1) quality of life in patients; (2) healthcare utilisation; (3) loneliness and symptom burden and (4) caregiver strain, caregiver quality of life and bereavement.
Methods and analysis: This is a protocol for a pragmatic, multicentre, parallel, two-arm randomised controlled trial in ED patients comparing two established models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. We will enrol 1350 patients aged 50+ years and 675 of their car…
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Rosa WE, Izumi S, Sullivan DR, Lakin J, Rosenberg AR, Creutzfeldt CJ, Lafond D, Tjia J, Cotter V, Wallace C, Sloan DE, Cruz-Oliver DM, DeSanto-Madeya S, Bernacki R, Leblanc TW, Epstein AS (2023)reviewMEDLINE-indexed journal, not yet read by usJournal of pain and symptom management102 citations Advance Care Planning in Serious Illness: A Narrative Review.
Context: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility.
Objective: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness.
Methods: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000-2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care.
Results: Early ACP practices were largely tied to mandated document completion, potentially failing to capture …
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Do unto others: doctors' personal end-of-life resuscitation preferences and their attitudes toward advance directives.
Objective: High-intensity interventions are provided to seriously-ill patients in the last months of life by medical sub-specialists. This study was undertaken to determine if doctors' age, ethnicity, medical sub-specialty and personal resuscitation and organ donation preferences influenced their attitudes toward Advance Directives (AD) and to compare a cohort of 2013 doctors to a 1989 (one year before the Patient Self Determination Act in 1990) cohort to determine any changes in attitudes towards AD in the past 23 years.
Design: Doctors in two academic medical centers participated in an AD simulation and attitudes survey in 2013 and their responses were compared to a cohort of doctors in 1989.
Outcomes: Resuscitation and organ donation preferences (2013 cohort) and attitudes toward AD (1989 and 2013 cohorts).
Results: In 2013, 1081 (94.2%) doctors of the 1147 approached participated. Co…
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Healthy siblings' perspectives about paediatric palliative care: A qualitative systematic review and meta-synthesis.
Background: Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide appropriate support for them. A review of existing literature is thus needed to better understand the experiences of these siblings and to identify research gaps that may require further examination.
Aim: To consolidate the available qualitative evidence on the perspectives of non-bereaved healthy siblings regarding paediatric palliative care.
Design: A qualitative systematic review using a meta-synthesis approach was conducted.
Data sources: Six electronic databases (PubMed, CINAHL, PsycINFO, Embase, Scopus and ProQuest Dissertations and Theses Global) were searched from each database's inception date until October 2022. The search included quali…
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What Is the State of Compassion Education? A Systematic Review of Compassion Training in Health Care.
Purpose: To investigate the current state and quality of compassion education interventions offered to health care providers during training or practice, determine how the components of each education intervention map onto the domains of an empirically based clinical model of compassion, and identify the most common approaches to compassion education.
Method: The MEDLINE, Embase, CINAHL Plus with Full Text, Sociological Abstracts, Web of Science, ERIC, and Education Research Complete databases were searched from inception to March 2020 in this systematic review. Studies that evaluated a compassion education intervention for health care providers or those in training to enhance compassion toward patients and/or families were included. A narrative synthesis of the included studies was performed. The components of each intervention were mapped onto the domains of compassion described in the…
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Bai M, Lazenby M (2015)systematic reviewMEDLINE-indexed journal, not yet read by usJournal of palliative medicine114 citations A systematic review of associations between spiritual well-being and quality of life at the scale and factor levels in studies among patients with cancer.
Objective: The purpose of this systematic review was to examine the literature for associations between spiritual well-being and quality of life (QOL) among adults diagnosed with cancer.
Methods: A systematic literature search was conducted in the PubMed and CINAHL databases on descriptive correlational studies that provided bivariate correlations or multivariate associations between spiritual well-being and QOL. A total of 566 citations were identified; 36 studies were included in the final review. Thirty-two studies were cross-sectional and four longitudinal; 27 were from the United States. Sample size ranged from 44 to 8805 patients.
Results: A majority of studies reported a positive association (ranges from 0.36 to 0.70) between overall spiritual well-being and QOL, which was not equal among physical, social, emotional, and functional well-being. The 16 studies that examined the Mean…
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Therapeutic life review in palliative care: a systematic review of quantitative evaluations.
Context: There is increasing interest in providing nonpharmacological treatments, including therapeutic life review interventions, to enhance palliative care patients' existential/spiritual domains.
Objectives: To review quantitative evaluations of therapeutic life review interventions to assist palliative care patients with prognoses of 6 months or fewer in addressing existential and spiritual domains.
Methods: Comprehensive searches of PubMed, Medline, Web of Science, CINAHL, Scopus, and PsycINFO were undertaken using a validated palliative care search filter in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. Each publication that met the inclusion criteria was read and classified according to the American Heart Association's Disease Management Taxonomy, Consolidated Standards of Reporting Trials, QualSyst, and the Task Force on Psychol…
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Quality measures for palliative care in patients with cancer: a systematic review.
Purpose: Quality assessment is a critical component of determining the value of medical services, including palliative care. Characterization of the current portfolio of measures that assess the quality of palliative care delivered in oncology is necessary to identify gaps and inform future measure development.
Methods: We performed a systematic review of MEDLINE/PubMed and the gray literature for quality measures relevant to palliative care. Measures were categorized into National Quality Forum domains and reviewed for methodology of development and content. Measures were additionally analyzed to draw summative conclusions on scope and span.
Results: Two hundred eighty-four quality measures within 13 measure sets were identified. The most common domains for measure content were Physical Aspects of Care (35%) and Structure and Processes of Care (22%). Of symptom-related measures, pain (3…
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Systematic review of psychosocial morbidities among bereaved parents of children with cancer.
The objective of this review was to comprehensively summarize existing studies utilizing validated instruments to measure psychosocial outcomes among bereaved parents of children with cancer. This population has increased risks of anxiety, depression, prolonged grief, and poor quality of life. Parental morbidity is associated with psychiatric co-morbidities, prior loss, economic hardship, duration, and intensity of child's cancer-therapy, perceptions of medical care, child's quality of life, preparedness for and location of the child's death. Rigorous, prospective research is needed to identify risk-groups, define outcomes, and design interventions which will improve parental outcomes after the death of a child due to cancer.
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The measurement of spirituality in palliative care and the content of tools validated cross-culturally: a systematic review.
Context: Despite the need to assess spiritual outcomes in palliative care, little is known about the properties of the tools currently used to do so. In addition, measures of spirituality have been criticized in the literature for cultural bias, and it is unclear which tools have been validated cross-culturally.
Objectives: This systematic review aimed to identify and categorize spiritual outcome measures validated in advanced cancer, human immunodeficiency virus (HIV), or palliative care populations; to assess the tools' cross-cultural applicability; and for those measures validated cross-culturally, to determine and categorize the concepts used to measure spirituality.
Methods: Eight databases were searched to identify relevant validation and research studies. An extensive search strategy included search terms in three categories: palliative care, spirituality, and outcome measurement.…
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White C, Hardy J (2010)systematic reviewMEDLINE-indexed journal, not yet read by usSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer67 citations What do palliative care patients and their relatives think about research in palliative care?-a systematic review.
Introduction: Research in palliative care patients has been controversial and is often challenging. It is important to know the views of potentially eligible patients themselves in order to determine the appropriateness of research in the palliative care population and to develop realistic studies that are practical and achievable in this population. This systematic review aims to identify the views of palliative care patients and their families towards research, the factors that are important when considering participation, and the types of research trial they would support or reject.
Methods: A systematic literature review was undertaken to identify what is known to date regarding the views of palliative care patients and their relatives towards research participation. Eight relevant studies were identified.
Discussion: There is an increasing body of evidence considering the views of p…
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Evidence-based recommendations for information and care planning in cancer care.
The practice of oncology is characterized by challenging communication tasks that make it difficult to ensure optimal physician-patient information sharing and care planning. Discussions of diagnosis, prognosis, and patient goals are essential processes that inform decisions. However, data suggest that there are deficiencies in this area. We conducted a systematic review to identify the evidence supporting high-quality clinical practices for information and care planning in the context of cancer care as part of the RAND Cancer Quality-Assessing Symptoms, Side Effects, and Indicators of Supportive Treatment Project. Domains of information and care planning that are important for high-quality cancer care include integration of palliation into cancer care, advance care planning, sentinel events as markers for the need to readdress a patient's goals of care, and continuity of care planning. …
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Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, Drake R, Friedrichsdorf S, Garros D, Giacomelli L, Lacerda A, Lazzarin P, Marceglia S, Marston J, Muckaden MA, Papa S, Parravicini E, Pellegatta F, Wolfe J (2022)MEDLINE-indexed journal, not yet read by usJournal of pain and symptom management147 citations International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS.
Context: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC.
Objectives: An international group of experts in PPC has revised the standards in PPC through the GO-PPaCS project (Global Overview - PPC Standards). The goal was to update the PPC standards considering the specificity of different settings, resources, and emerging challenges. The present document is intended to reach all people directly or indirectly involved in PPC.
Methods: A literature review in MEDLINE was conducted to expand on the fundamental points and current standards on PPC and to cover an international setting. The literature search (updated on the 15th of April 2021) was carried out using different combinations of keywords and focusing on papers published in Eng…
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Qaseem A, Snow V, Shekelle P, Casey DE, Cross JT, Owens DK, Clinical Efficacy Assessment Subcommittee of the American College of Physicians, Dallas P, Dolan NC, Forciea MA, Halasyamani L, Hopkins RH, Shekelle P (2008)guidelineMEDLINE-indexed journal, not yet read by usAnnals of internal medicine158 citations Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guideline from the American College of Physicians.
RECOMMENDATION 1: In patients with serious illness at the end of life, clinicians should regularly assess patients for pain, dyspnea, and depression. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 2: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage pain. For patients with cancer, this includes nonsteroidal anti-inflammatory drugs, opioids, and bisphosphonates. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 3: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage dyspnea, which include opioids in patients with unrelieved dyspnea and oxygen for short-term relief of hypoxemia. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 4: In patients with serious illness at the end …
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Thompson GN, Chochinov HM, Wilson KG, McPherson CJ, Chary S, O'Shea FM, Kuhl DR, Fainsinger RL, Gagnon PR, Macmillan KA (2009)cohort or longitudinalMEDLINE-indexed journal, not yet read by usJournal of clinical oncology : official journal of the American Society of Clinical Oncology75 citations Prognostic acceptance and the well-being of patients receiving palliative care for cancer.
Purpose: To identify the impact of prognostic acceptance/nonacceptance on the physical, psychological, and existential well-being of patients with advanced cancer.
Patients and methods: A Canadian multicenter prospective national survey was conducted of patients diagnosed with advanced cancer with an estimated survival duration of 6 months or less (n = 381) receiving palliative care services.
Results: Of the total number of participants, 74% reported accepting their situation and 8.6% reported accepting with "moderate" to "extreme" difficulty. More participants with acceptance difficulties than without acceptance difficulties met diagnostic criteria for a depressive or anxiety disorder (chi(2) = 8.67; P < .01). Nonacceptors were younger (t = 4.13; P < .000), had more than high school education (chi(2) = 4.69; P < .05), and had smaller social networks (t = 2.53; P < .05) than Acceptors. O…
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"That's like an act of suicide" patients' attitudes toward deactivation of implantable defibrillators.
Objective: To understand potential patient barriers to discussions about implantable cardioverter defibrillator (ICD) deactivation in patients with advanced illness.
Design: Qualitative focus groups.
Participants: Fifteen community-dwelling, ambulatory patients with ICDs assigned to focus groups based on duration of time since implantation and whether they had ever received a shock from their device.
Approach: A physician and a social worker used a predetermined discussion guide to moderate the groups, and each session was audiotaped and subsequently transcribed. Transcripts were analyzed using the method of constant comparison.
Results: No participant had ever discussed deactivation with their physician nor knew that deactivation was an option. Patients expressed a great deal of anxiety about receiving shocks from their device. Participants discussed why they needed the device and expre…
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