End of life care and the approach of death.
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551 to 575 of 969"It doesn't exist…": negotiating palliative care from a culturally and linguistically diverse patient and caregiver perspective.
Background: The end of life represents a therapeutic context that acutely raises cultural and linguistic specificities, yet there is very little evidence illustrating the importance of such dynamics in shaping choices, trajectories and care practices. Culture and language interplay to offer considerable potential challenges to both patient and provider, with further work needed to explore patient and caregiver perspectives across cultures and linguistic groups, and provider perspectives. The objective of this study was to develop a critical, evidence-based understanding of the experiences of people from Culturally and Linguistically Diverse (CALD) backgrounds, and their caregivers, in a palliative care setting.
Methods: A qualitative study, using semi-structured interviews to explore key experiences and perspectives of CALD patients and caregivers currently undergoing treatment under onc…
matched on Palliative Care (mesh), Palliative Care (keyword), end of life (text)
What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach.
Aims: To determine who provides bereavement support in the community, what sources are perceived to be the most or least helpful and for what reason, and to identify the empirical elements for optimal support in developing any future compassionate communities approach in palliative care.
Design: A population-based cross-sectional investigation of bereavement experiences. Sources of support (informal, community and professional) were categorised according to the Public Health Model of Bereavement Support; most helpful reasons were categorised using the Social Provisions Scale, and least helpful were analysed using inductive content analysis.
Setting and participants: Bereaved people were recruited from databases of funeral providers in Australia via an anonymous postal survey (2013-2014).
Results: In total, 678 bereaved people responded to the survey. The most frequently used sources of s…
matched on Terminal Care (mesh), Palliative Care (keyword), end of life (text)
The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers' hours of care and expenditures.
Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers' contribution to end-of-life care.
Aim: The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care.
Design: A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1-16 May 2015. Data were collected on decedents' health and situation, care suppor…
matched on Terminal Care (mesh), Palliative Care (keyword), end of life (text)
Guerriere D, Husain A, Zagorski B, Marshall D, Seow H, Brazil K, Kennedy J, Burns S, Brooks H, Coyte PC (2016)MEDLINE-indexed journal, not yet read by usHealth & social care in the community74 citations Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada.
Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information col…
matched on Palliative Care (mesh), Palliative Care (keyword), terminal illness (text)
Talking with parents about end-of-life decisions for their children.
Background and objective: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process.
Methods: We conducted a prospective exploratory study in 2 Dutch University Medical Centers.
Results: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical inf…
matched on Palliative Care (mesh), Palliative Care (keyword), end of life (text)
Mueller PS (2022)reviewMEDLINE-indexed journal, not yet read by usFrontiers in cardiovascular medicine6 citations Ethical and Legal Concerns Associated With Withdrawing Mechanical Circulatory Support: A U.S. Perspective.
Hundreds of thousands of Americans have advanced heart failure and experience severe symptoms (e. g., dyspnea) with minimal exertion or at rest despite optimal management. Although heart transplant is an effective treatment for advanced heart failure, the demand for organs far exceeds the supply. Another option for these patients is mechanical circulatory support (MCS) provided by devices such as the ventricular assist device and total artificial heart. MCS alleviates symptoms, prolongs life, and provides a "bridge to transplant" or a decision regarding future management such as "destination therapy," in which the patient receives lifelong MCS. However, a patient receiving MCS, or his/her surrogate decision-maker, may conclude ongoing MCS is burdensome and no longer consistent with the patient's healthcare-related values, goals, and preferences and, as a result, request withdrawal of MCS…
matched on Palliative Care (keyword), Advance Care Planning (keyword)
Sullivan DR, Iyer AS, Enguidanos S, Cox CE, Farquhar M, Janssen DJA, Lindell KO, Mularski RA, Smallwood N, Turnbull AE, Wilkinson AM, Courtright KR, Maddocks M, McPherson ML, Thornton JD, Campbell ML, Fasolino TK, Fogelman PM, Gershon L, Gershon T, Hartog C, Luther J, Meier DE, Nelson JE, Rabinowitz E, Rushton CH, Sloan DH, Kross EK, Reinke LF (2022)MEDLINE-indexed journal, not yet read by usAmerican journal of respiratory and critical care medicine94 citations Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.
Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy,…
matched on Palliative Care (mesh), Advance Care Planning (mesh), end of life (text)
Mentzelopoulos SD, Couper K, Voorde PV, Druwé P, Blom M, Perkins GD, Lulic I, Djakow J, Raffay V, Lilja G, Bossaert L (2021)MEDLINE-indexed journal, not yet read by usResuscitation134 citations European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions.
These European Resuscitation Council Ethics guidelines provide evidence-based recommendations for the ethical, routine practice of resuscitation and end-of-life care of adults and children. The guideline primarily focus on major ethical practice interventions (i.e. advance directives, advance care planning, and shared decision making), decision making regarding resuscitation, education, and research. These areas are tightly related to the application of the principles of bioethics in the practice of resuscitation and end-of-life care.
matched on Terminal Care (mesh), Advance Care Planning (mesh), end of life (text)
COVID-19 Risk Perceptions and Intentions to Engage in Familial Advance Care Planning: The Mediating Role of Death Anxiety.
Advance care planning (ACP) is the process of communicating about end-of-life (EOL) care with loved ones. Due to the deadly nature of COVID-19, ACP is vital. Unfortunately, fewer than 30% of American patients engage in ACP. In addition to low motivation, people experiencing death anxiety (DA) similarly avoid ACP. This finding coincides with predictions from terror management theory (TMT) that people avoid DA-arousing behaviors. Guided by the theory of planned behavior (TPB) and the health belief model (HBM), we posited COVID-19 risk perceptions would be positively associated with determinants of health behavior, including intention to share and ask loved ones about EOL wishes, as well as the associated attitudes, norms, and level of perceived behavioral control regarding ACP. Guided by TMT, we posited that DA negatively mediated relationships between COVID-19 risk perceptions and these …
matched on Terminal Care (mesh), Advance Care Planning (mesh), end of life (text)
Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity.
Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC.
Objective: To explore the experiences of bereaved family caregivers with ACP for CMC.
Design, setting, and participants: This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July t…
matched on Terminal Care (mesh), Advance Care Planning (mesh), end of life (text)
End-of-life care communications and shared decision-making in Norwegian nursing homes--experiences and perspectives of patients and relatives.
Background: Involving nursing home patients and their relatives in end-of-life care conversations and treatment decisions has recently gained increased importance in several Western countries. However, there is little knowledge about how the patients themselves and their next-of-kin look upon involvement in end-of-life care decisions. The purpose of this paper is to explore nursing home patients' and next-of-kin's experiences with- and perspectives on end-of-life care conversations, information and shared decision-making.
Methods: The study has a qualitative and explorative design, based on a combination of individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 33 relatives. The data was analysed applying a "bricolage" approach". Participation was based on informed consent, and the study was approved by the Regional Committees for Medical…
matched on Terminal Care (mesh), Advance Care Planning (mesh), end of life (text)
'Conditional candour' and 'knowing me': an interpretive description study on patient preferences for physician behaviours during end-of-life communication.
Objective: To understand patients' preferences for physician behaviours during end-of-life communication.
Methods: We used interpretive description methods to analyse data from semistructured, one-on-one interviews with patients admitted to general medical wards at three Canadian tertiary care hospitals. Study recruitment took place from October 2012 to August 2013. We used a purposive, maximum variation sampling approach to recruit hospitalised patients aged ≥55 years with a high risk of mortality within 6-12 months, and with different combinations of the following demographic variables: race (Caucasian vs non-Caucasian), gender and diagnosis (cancer vs non-cancer).
Results: A total of 16 participants were recruited, most of whom (69%) were women and 70% had a non-cancer diagnosis. Two major concepts regarding helpful physician behaviour during end-of-life conversations emerged: (1) 'kn…
matched on Terminal Care (mesh), Advance Care Planning (mesh), end of life (text)
Gripp S, Moeller S, Bölke E, Schmitt G, Matuschek C, Asgari S, Asgharzadeh F, Roth S, Budach W, Franz M, Willers R (2007)MEDLINE-indexed journal, not yet read by usJournal of clinical oncology : official journal of the American Society of Clinical Oncology202 citations Survival prediction in terminally ill cancer patients by clinical estimates, laboratory tests, and self-rated anxiety and depression.
Purpose: To study how survival of palliative cancer patients relates to subjective prediction of survival, objective prognostic factors (PFs), and individual psychological coping.
Patients and methods: Survival was estimated according to three categories (< 1 month, 1 to 6 months, and > 6 months) by two physicians (A and B) and the institutional tumor board (C) for 216 patients recently referred for palliative radiotherapy. After 6 months, the accuracy of these estimates was assessed. The prognostic relevance of clinical symptoms, performance status, laboratory tests, and self-reported emotional distress (Hospital Anxiety and Depression Scale) was investigated.
Results: In 61%, 55%, and 63% of the patients, prognoses were correctly estimated by A, B, and C, respectively. kappa statistic showed fair agreement of the estimates, which proved to be overly optimistic. Accuracy of the three es…
matched on Palliative Care (mesh), Terminally Ill (mesh), terminal illness (text)
Beyond substituted judgment: How surrogates navigate end-of-life decision-making.
Objectives: To characterize how surrogates plan to make medical decisions for others.
Design: Descriptive study using semistructured qualitative interviews.
Setting: Surrogates were interviewed by telephone from their homes.
Participants: Fifty experienced surrogate decision-makers identified to make decisions for older, chronically ill veterans.
Measurements: Surrogates were asked to describe advance care planning conversations with loved ones and how they planned to make future medical decisions. Thematic content analysis was used to identify bases for decision-making.
Results: Surrogates described the motivators and the content of advance care planning conversations with loved ones. Surrogates described five bases for decision-making: (1) conversations (making decisions based on their knowledge of their loved ones' preferences), (2) relying on documents (referring to their loved ones'…
matched on Terminal Care (mesh), Advance Care Planning (mesh), end of life (text)
A burden to others: a common source of distress for the terminally ill.
Recent research into the desire for death among people with terminal illness has begun to recognize the importance of "feeling oneself a burden to others" as a factor in suicidal behaviour. In this study, 69 patients with advanced cancer underwent semi-structured interviews. The sense of self-perceived burden was found to be a common experience, reported by 39.1% of participants as a minimal or mild concern and by 38% as a moderate to extreme concern. The sense of burden showed a low correlation with physical symptoms (r = 0.02-0.24) and higher correlations with psychological problems (r = 0.35-0.39) and existential issues (r = 0.45-0.49). Comparisons of participants with high or low levels of self-perceived burden showed the importance of this factor for overall quality of life. In summary, self-perceived burden is an important but underestimated dimension of social cognition in the med…
matched on Palliative Care (mesh), Terminally Ill (mesh), terminal illness (text)
Death, love, and evolution: Conceptions of death beyond terror.
Recent years have seen an influx in interest on the role of death anxiety in human behavior. Terror Management Theory prevails as the leading theoretical and empirical paradigm utilized in the literature; however emerging research has revealed serious shortcomings with the paradigm. In this paper we examine the concept of death anxiety from a socio-evolutionary perspective. We outline how the attachment system evolved to prevent death during an extended period of juvenile vulnerability and is further co-opted into adulthood to maintain survival. Through a broader understanding of contemporary evolutionary thinking, including attachment theory, we propose that the hitherto inconsistent and amorphous definition of death anxiety be more usefully re-conceptualized as a fear of premature death. We explore how this re-conceptualization can be used to help explicate phenomena that existing para…
matched on Attitude to Death (mesh)
Jong J (2021)reviewMEDLINE-indexed journal, not yet read by usCurrent opinion in psychology20 citations Death anxiety and religion.
This review summarises research on the relationship between death anxiety and religiosity. The fear of death is commonly hypothesized as a motivation for religious belief. From a Terror Management Theory perspective, religious beliefs are especially attractive because they offer both literal and symbolic immortality in the form of afterlife beliefs and belonging in venerable systems of value respectively. However, the evidence for any relationship - whether correlational or causal - between death anxiety and religious belief is weak. Indeed, evidence for death anxiety under normal (i.e. non-life threatening) circumstances is surprisingly hard to find. If the fear of death motivates religiosity, it does so subtly, weakly, and sporadically.
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The Grief of Parents After the Death of a Young Child.
Research demonstrates that severe forms of grief and grief-related pathology exist in the general population. Less attention, however, has been paid to the grief of parents following the death of a young, dependent child. In this review, we summarize a search of Pubmed, PsycINFO and Web of Science from 1995 to 2017, using the terms 'parental complicated grief', 'parental traumatic grief', and 'parent Prolonged Grief Disorder', specifically addressing parental grief and identified risk factors for complicated or prolonged grief. Forty-two studies met criteria and indicate a significant burden of complicated or prolonged grief in parents of children dying from virtually any cause. It appears that the empiric literature is undermined by great variability, including the composition of samples, the causes of death studied, the psychometric measures used, and post-loss intervals. We conclude t…
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[Death anxiety and its importance for psychiatry].
Inner dealing with the question of death as well as death anxiety accompany human beings from the beginning, which is reflected by the different philosophical and religious positions. It is obvious that work on this issue is sparse in the field of psychiatric disorders. Due to the few literatures it can however be assumed that death anxiety plays a greater role within the changed thoughts and feelings of psychiatric patients, whose intensity we probably determine and assess in non-sufficient manner yet. The terms are defined and the problematic of ego destruction in patients with schizophrenia as expression of death anxiety is specifically discussed. Furthermore, the few studies about death anxiety in psychiatric disorders, its psychodynamics and approaches of the so-called terror management theory are presented besides other aspects. The current state of literature is presented, points …
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A narrative review of the empirical evidence on public attitudes on brain death and vital organ transplantation: the need for better data to inform policy.
Vital organ transplantation is premised on 'the dead donor rule': donors must be declared dead according to medical and legal criteria prior to donation. However, it is controversial whether individuals diagnosed as 'brain dead' are really dead in accordance with the established biological conception of death-the irreversible cessation of the functioning of the organism as a whole. A basic understanding of brain death is also relevant for giving valid, informed consent to serve as an organ donor. There is therefore a need for reliable empirical data on public understanding of brain death and vital organ transplantation. We conducted a review of the empirical literature that identified 43 articles with approximately 18,603 study participants. These data demonstrate that participants generally do not understand three key issues: (1) uncontested biological facts about brain death, (2) the l…
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A social constructionist account of grief: loss and the narration of meaning.
In contrast to dominant Western conceptions of bereavement in largely intrapsychic terms, the authors argue that grief or mourning is not primarily an interior process, but rather one that is intricately social, as the bereaved commonly seek meaning in this unsought transition in not only personal and familial, but also broader community and even cultural spheres. The authors therefore advocate a social constructionist model of grieving in which the narrative processes by which meanings are found, appropriated, or assembled occur at least as fully between people as within them. In this view, mourning is a situated interpretive and communicative activity charged with establishing the meaning of the deceased's life and death, as well as the postdeath status of the bereaved within the broader community concerned with the loss. They describe this multilevel phenomenon drawing first on psycho…
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Bryant RA (2014)reviewMEDLINE-indexed journal, not yet read by usCurrent opinion in psychiatry35 citations Prolonged grief: where to after Diagnostic and Statistical Manual of Mental Disorders, 5th Edition?
Purpose of review: Although there is much evidence for the construct of prolonged grief, there was much controversy over the proposal to introduce a prolonged grief diagnosis into Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), and it was finally rejected as a diagnosis in DSM-5. This review outlines the evidence for and against the diagnosis, and highlights the implications of the DSM-5 decision.
Recent findings: Convergent evidence indicates that prolonged grief characterized by persistently severe yearning for the deceased is a distinct construct from bereavement-related depression and anxiety, is associated with marked functional impairment, is responsive to targeted treatments for prolonged grief, and has been validated across different cultures, age groups, and types of bereavement. Although DSM-5 has rejected the construct as a formal diagnosis, evidenc…
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Death anxiety and its role in psychopathology: reviewing the status of a transdiagnostic construct.
Death anxiety is considered to be a basic fear underlying the development and maintenance of numerous psychological conditions. Treatment of transdiagnostic constructs, such as death anxiety, may increase treatment efficacy across a range of disorders. Therefore, the purpose of the present review is to: (1) examine the role of Terror Management Theory (TMT) and Experimental Existential Psychology in understanding death anxiety as a transdiagnostic construct, (2) outline inventories used to evaluate the presence and severity of death anxiety, (3) review research evidence pertaining to the assessment and treatment of death anxiety in both non-clinical and clinical populations, and (4) discuss clinical implications and future research directions. Numerous inventories have been developed to evaluate the presence and severity of death anxiety, and research has provided compelling evidence tha…
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Bereavement and anxiety.
Bereavement, one of life's most difficult experiences, usually triggers acute grief with yearning and longing for the deceased person that is often intense and preoccupying, along with frequent thoughts and memories of the person who died and relatively little interest in anything unrelated to the deceased loved one. Anxiety is a very common feature of grief that is often neglected. Anxiety is a natural response of the attachment system to separation from a loved one, seen in adults as well as children. Confrontation with one's own death is also a natural trigger of anxiety, though we usually protect ourselves from mortality salience using terror management strategies related to cultural values and self-esteem. In addition, loss of a loved one can trigger the onset of a DSM-IV anxiety disorder that, when present, can derail the mourning process and prolong acute grief. Bereavement-relate…
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Interconception care for couples after perinatal loss: a comprehensive review of the literature.
Perinatal loss can be emotionally devastating for couples who experience miscarriage, fetal or neonatal death. Nurses in a variety of settings can assist couples through their grief by providing emotional support, giving information about the grief process, and in planning for a future pregnancy or deciding to forego future childbearing. This article explicates the relationship between grief and perinatal loss and its effects on couples, specifically in the interconception period, when the initial grief and distress have begun to subside. Interconception care focuses on bridging the couple from the end of the postpartum period to the subsequent pregnancy or decision not to conceive again. Nurses assist couples in distinguishing between uncomplicated grief, complicated grief, and depression, and make appropriate referrals. Openness to expressions of grief, helping couples mobilize support…
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