End of life care and the approach of death.
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351 to 375 of 969Nurses' views regarding implementing advance care planning for older people: a systematic review and synthesis of qualitative studies.
Aims and objectives: To explore nurses' views regarding implementing advance care planning for older people.
Background: Advance care planning is recommended as a way for older people to discuss their future care with family members and health professionals. Nurses play key roles in the process of advance care planning, including ensuring that patients are informed of their rights and that decisions are known to, and respected by, the health care team. Thus, understanding of nurses' experiences and perspectives regarding implementing advance care planning for older people is a significant topic for review.
Design: Qualitative meta-synthesis.
Methods: Four databases including CINAHL plus, Medline [EBSCOhost], EMBASE, and PsycINFO were searched, and 1844 articles were initially screened. Finally, 18 articles were critically appraised and a thematic synthesis was undertaken.
Results: Four t…
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Treatment of holistic suffering in cancer: A systematic literature review.
Background: Holistic suffering is a debilitating problem for cancer patients. Although many treatments have been suggested for its alleviation, they have not been compared for effectiveness.
Aim: This literature review seeks to identify what interventions are effective in treatment of holistic suffering of cancer patients.
Design: A systematic review was conducted to identify and evaluate studies of interventions for holistic suffering in adult cancer patients. Search terms were generated iteratively from the literature.
Data sources: MEDLINE, EMBASE, the Cochrane Library and PsycINFO databases were searched for the years 1992-2015. Included studies were peer-reviewed, English language reports of either a controlled trial or a randomised controlled trial focusing on therapies aimed at relieving suffering in adult cancer patients. Articles were excluded if focused predominantly on spiritu…
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A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia.
Background: advance care planning (ACP) allows a patient to state their preferences for care, so that if in future they cannot make decisions their wishes are known. Our aim was to review systematically the effectiveness of ACP interventions in people with cognitive impairment and dementia.
Methods: systematic searches of key electronic databases, supplemented by hand searches of reference lists and consultation with experts. Two independent reviewers undertook screening, data extraction and quality assessment.
Results: four studies were included; three allocated providers randomly to intervention or control arm. All took place in nursing homes. Three studies reported formal processes of capacity assessment, only up to 36% of participants were judged to have capacity. Three studies reported positive findings in terms of documentation of patient preferences for care. Two studies reported …
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Bickel KE, McNiff K, Buss MK, Kamal A, Lupu D, Abernethy AP, Broder MS, Shapiro CL, Acheson AK, Malin J, Evans T, Krzyzanowska MK (2016)MEDLINE-indexed journal, not yet read by usJournal of oncology practice111 citations Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and Palliative Medicine Guidance Statement.
Purpose: Integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to specialist palliative medicine. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices.
Methods: An expert steering committee outlined 966 palliative care service items, in nine domains, each describing a candidate element of primary palliative care delivery for patients with advanced cancer or high symptom burden. Using modified Delphi methodology, 31 multidisciplinary panelists rated each service item on three constructs: importance, feasibility, and scope within medical oncology practice.
Results: Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); C…
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Palliative Care in Obstetrics and Gynecology.
Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be offered concurrently with disease-directed therapies, including when the goal is cure. Obstetrics and gynecology patients for whom palliative care is most appropriate include women with gynecologic cancer and women with a fetus or neonate with a potentially life-limiting illness. Integration of palliative care for these patients offers both clinical and health care utilization benefits, including improved symptom management, improved quality of life, and high-value care. Palliative care can be provided by palliative care specialists (specialty palliative care) or by the team treating the life-limiting illness (primary palliative care), depen…
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Balboni MJ, Sullivan A, Amobi A, Phelps AC, Gorman DP, Zollfrank A, Peteet JR, Prigerson HG, Vanderweele TJ, Balboni TA (2013)MEDLINE-indexed journal, not yet read by usJournal of clinical oncology : official journal of the American Society of Clinical Oncology205 citations Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training.
Purpose: To determine factors contributing to the infrequent provision of spiritual care (SC) by nurses and physicians caring for patients at the end of life (EOL).
Patients and methods: This is a survey-based, multisite study conducted from March 2006 through January 2009. All eligible patients with advanced cancer receiving palliative radiation therapy and oncology physician and nurses at four Boston academic centers were approached for study participation; 75 patients (response rate = 73%) and 339 nurses and physicians (response rate = 63%) participated. The survey assessed practical and operational dimensions of SC, including eight SC examples. Outcomes assessed five factors hypothesized to contribute to SC infrequency.
Results: Most patients with advanced cancer had never received any form of spiritual care from their oncology nurses or physicians (87% and 94%, respectively; P for d…
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Davison SN (2010)MEDLINE-indexed journal, not yet read by usClinical journal of the American Society of Nephrology : CJASN461 citations End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.
Background and objectives: Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients' preferences and to help prioritize and guide future innovation in end-of-life care policy.
Design, setting, participants, & measurements: A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008.
Results: Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, a…
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Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives.
Purpose: Many seriously ill patients with cancer do not discuss prognosis or advance directives (ADs), which may lead to inappropriate and/or unwanted aggressive care at the end of life. Ten years ago, patients with cancer said they would not like to discuss ADs with their oncologist but would be willing to discuss them with an admitting physician. We assessed whether this point of view still held.
Patients and methods: Semi-structured interviews were conducted with 75 consecutively admitted patients with cancer in the cancer inpatient service.
Results: Of those enrolled, 41% (31 of 75) had an AD. Nearly all (87%, 65 of 75) thought it acceptable to discuss ADs with the admitting physician with whom they had no prior relationship, and 95% (62 of 65) thought that discussing AD issues was very or somewhat important. Only 7% (5 of 75) had discussed ADs with their oncologist, and only 23% (16…
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Barriers to advance care planning in chronic obstructive pulmonary disease.
The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of 'end of life' withi…
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Satisfaction with end-of-life care for nursing home residents with advanced dementia.
Objectives: To identify factors associated with satisfaction with care for healthcare proxies (HCPs) of nursing home (NH) residents with advanced dementia.
Design: Cross-sectional study.
Setting: Thirteen NHs in Boston.
Participants: One hundred forty-eight NH residents aged 65 and older with advanced dementia and their formally designated HCPs. MASUREMENTS: The dependent variable was HCPs' score on the Satisfaction With Care at the End of Life in Dementia (SWC-EOLD) scale (range 10-40; higher scores indicate greater satisfaction). Resident characteristics analyzed as independent variables were demographic information, functional and cognitive status, comfort, tube feeding, and advance care planning. HCP characteristics were demographic information, health status, mood, advance care planning, and communication. Multivariate stepwise linear regression was used to identify factors independ…
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Spiritual issues in the care of dying patients: ". . . it's okay between me and god".
Spiritual issues arise frequently in the care of dying patients, yet health care professionals may not recognize them, may not believe they have a duty to address these issues, and may not understand how best to respond to their patients' spiritual needs. The case of a patient with a strong religious belief in a miraculous cure of metastatic pancreatic cancer is used to explore how better understanding of this belief and more explicitly spiritual conversation with the patient by his treating team might have provided opportunities for an improved plan of care. This article distinguishes spirituality from religion; describes the salient spiritual needs of patients at the end of life as encompassing questions of meaning, value, and relationship; delineates the role physicians ought to play in ascertaining and responding to those needs; and discusses the particular issue of miracles, arguing…
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Advance care planning beyond advance directives: perspectives from patients and surrogates.
Context: Advance care planning (ACP) has focused on documenting life-sustaining treatment preferences in advance directives (ADs). The ADs alone may be insufficient to prepare diverse patients and surrogates for complex medical decisions.
Objectives: To understand what steps best prepare patients and surrogates for decision making.
Methods: We conducted 13 English/Spanish focus groups with participants from a Veterans Affairs and county hospital and the community. Seven groups included patients (n=38), aged ≥65 years, who reported making serious medical decisions. Six separate groups included surrogates (n=31), aged ≥18 years, who made decisions for others. Semistructured focus groups asked what activities best prepared the participants for decision making. Two investigators independently coded data and performed thematic content analysis. Disputes were resolved by consensus.
Results: Th…
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Decision aids for advance care planning: an overview of the state of the science.
Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search …
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Communication strategies and cultural issues in the delivery of bad news.
Good communication is a fundamental skill for all palliative care clinicians. Patients present with varied desires, beliefs, and cultural practices, and navigating these issues presents clinicians with unique challenges. This article provides an overview of the evidence for communication strategies in delivering bad news and discussing advance care planning. In addition, it reviews the literature regarding cultural aspects of care for terminally ill patients and their families and offers strategies for engaging them. Through good communication practices, clinicians can help to avoid conflict and understand patients' desires for end of life care.
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Effects of a combined nature-based and audio-based virtual mindfulness intervention on stress and wellbeing of COVID-19 healthcare workers: a randomized controlled trial.
Background: The global COVID-19 pandemic and its subsequent transition to an endemic phase has highly increased psychosocial distress among healthcare workers. This chronic stress may culminate into burnout, which has been associated with impaired patient care and increased medical errors. Exposure to nature-based programs have been shown to reduce levels of perceived stress and promote well-being. However, benefits derived from nature programs can be short-lived. Mindfulness-based interventions represent a promising additive option to enhance benefit. The present study proposes to combine a nature-based program with an audio-based mindfulness intervention to address stress and promote psychosocial-spiritual wellbeing in COVID-19 healthcare workers.
Methods: Between June 2021 and October 2023, 78 healthcare workers were randomized into a Nature only group (Nature), a Combined Nature-Mind…
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Feasibility and Acceptability: Narrative Writing with Caregivers in Pediatric Critical Care.
Background: Pediatric intensive care unit (PICU) admissions are caregiver stressors with potential long-term impact. Writing interventions have shown health benefits, although not yet with parents writing during their child's PICU admission. Objective: The study objective was to quantify intervention acceptability and feasibility and to qualitatively examine written texts. Design: This is a proof-of-concept three-arm randomized trial. Setting and Subjects: Subjects were legal caregivers ≥18 years, able to read and write English, and of children ≤18 years in a U.S. PICU for ≥1 day. Measurements: Treatment Acceptability Questionnaire, enrollment rates, completed encounters, and qualitative thematic analysis. Results: Acceptability was high (49% enrollment; mean [standard deviation] Treatment Acceptability Questionnaire scores: M = 24.8 [2.4]). Feasibility was 100% scheduled-to-completed se…
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Dyadic psychosocial intervention for advanced lung cancer patients and their family caregivers: results of a randomized pilot trial.
Background: Advanced lung cancer (LC) patients and their families have reported low self-efficacy for self-care/caregiving and high rates of distress, yet few programs exist to address their supportive care needs during treatment. This pilot study examined the feasibility, acceptability, and preliminary efficacy of a 6-session, telephone-based dyadic psychosocial intervention that was developed for advanced LC patients and their caregivers. The program was grounded in self-determination theory (SDT), which emphasizes the importance of competence (self-efficacy), autonomy (sense of choice/volition), and relatedness (sense of belonging/connection) for psychological functioning. The primary outcomes were patient and caregiver psychological functioning (depression/anxiety) and caregiver burden. The secondary outcomes were the SDT constructs of competence, autonomy, and relatedness.
Methods: …
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Palliative care reimagined: a needed shift.
Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers-an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do n…
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The landscape of distress in the terminally ill.
Understanding the complexities of distress and knowing who is most vulnerable is foundational to the provision of quality, palliative end-of-life care. Although prior studies have examined the prevalence of symptom distress among patients nearing death, these studies have tended to largely focus on physical and, to a lesser extent, psychological challenges. The aim of this study was to use the Patient Dignity Inventory (PDI), a novel, reliable, and validated measure of end-of-life distress, to describe a broad landscape of distress in patients who are terminally ill. The PDI, a 25-item self-report, was administered to 253 patients receiving palliative care. Each PDI item is rated by patients to indicate the degree to which they experience various kinds of end-of-life distress. Palliative care patients reported an average of 5.74 problems (standard deviation, 5.49; range, 0-24), including…
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Nursing students' death anxiety and fear towards dementia patients.
Objective: This study investigated the relationship between death anxiety (DA) and fear towards patients according to the age and illness of the patient.
Methods: A sample of 94 undergraduate nursing students from an Australian university were presented with a hypothetical patient, who varied by age (29 years or 71 years) and illness (arthritis, cancer or dementia). They then completed measures of DA and fear towards the patient.
Results: Older patients with dementia were associated with higher DA compared to all other conditions. Greater fear was associated with patients in the dementia target condition.
Conclusion: The findings from this study are consistent with terror management theory; specifically, older age and terminal illness are associated with greater DA. Implications are discussed regarding the quality of care provided to older people with dementia.
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Alcorn SR, Balboni MJ, Prigerson HG, Reynolds A, Phelps AC, Wright AA, Block SD, Peteet JR, Kachnic LA, Balboni TA (2010)cohort or longitudinalMEDLINE-indexed journal, not yet read by usJournal of palliative medicine120 citations "If God wanted me yesterday, I wouldn't be here today": religious and spiritual themes in patients' experiences of advanced cancer.
Background: This study sought to inductively derive core themes of religion and/or spirituality (R/S) active in patients' experiences of advanced cancer to inform the development of spiritual care interventions in the terminally ill cancer setting.
Methods: This is a multisite, cross-sectional, mixed-methods study of randomly-selected patients with advanced cancer (n = 68). Scripted interviews assessed the role of R/S and R/S concerns encountered in the advanced cancer experience. Qualitative and quantitative data were analyzed. Theme extraction was performed with interdisciplinary input (sociology of religion, medicine, theology), utilizing grounded theory. Spearman correlations determined the degree of association between R/S themes. Predictors of R/S concerns were assessed using linear regression and analysis of variance.
Results: Most participants (n = 53, 78%) stated that R/S had be…
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Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial.
Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor.
Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes.
Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff.
Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers …
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Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial.
Importance: Advance care planning improves the receipt of medical care aligned with patients' values; however, it remains suboptimal among diverse patient populations. To mitigate literacy, cultural, and language barriers to advance care planning, easy-to-read advance directives and a patient-directed, online advance care planning program called PREPARE For Your Care (PREPARE) were created in English and Spanish.
Objective: To compare the efficacy of PREPARE plus an easy-to-read advance directive with an advance directive alone to increase advance care planning documentation and patient-reported engagement.
Design, setting, and participants: A comparative efficacy randomized clinical trial was conducted from February 1, 2014, to November 30, 2017, at 4 safety-net, primary-care clinics in San Francisco among 986 English-speaking or Spanish-speaking primary care patients 55 years or older …
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Effect of the PREPARE Website vs an Easy-to-Read Advance Directive on Advance Care Planning Documentation and Engagement Among Veterans: A Randomized Clinical Trial.
Importance: Documentation rates of patients' medical wishes are often low. It is unknown whether easy-to-use, patient-facing advance care planning (ACP) interventions can overcome barriers to planning in busy primary care settings.
Objective: To compare the efficacy of an interactive, patient-centered ACP website (PREPARE) with an easy-to-read advance directive (AD) to increase planning documentation.
Design, setting, and participants: This was a comparative effectiveness randomized clinical trial from April 2013 to July 2016 conducted at multiple primary care clinics at the San Francisco VA Medical Center. Inclusion criteria were age of a least 60 years; at least 2 chronic and/or serious conditions; and 2 or more primary care visits; and 2 or more additional clinic, hospital, or emergency room visits in the last year.
Interventions: Participants were randomized to review PREPARE plus an…
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Improving advance care planning for English-speaking and Spanish-speaking older adults: study protocol for the PREPARE randomised controlled trial.
Introduction: Advance care planning (ACP) is a process that allows patients to identify their goals for medical care. Traditionally, ACP has focused on completing advance directives; however, we have expanded the ACP paradigm to also prepare patients to communicate their wishes and make informed decisions. To this end, we created an ACP website called PREPARE (http://www.prepareforyourcare.org) to prepare diverse English-speaking and Spanish-speaking older adults for medical decision-making. Here, we describe the study protocol for a randomised controlled efficacy trial of PREPARE in a safety-net setting. The goal is to determine the efficacy of PREPARE to engage diverse English-speaking and Spanish-speaking older adults in a full spectrum of ACP behaviours.
Methods and analysis: We include English-speaking and Spanish-speaking adults from an urban public hospital who are ≥55 years old, …
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