End of life care and the approach of death.
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251 to 275 of 969Suffering and distress at the end-of-life.
Objective: Suffering frequently occurs in the context of chronic and progressive medical illnesses and emerges with great intensity at end-of-life. A review of the literature on suffering and distress-related factors was conducted to illustrate the integrative nature of suffering in this context. We hope it will result in a comprehensive approach, centered in the patient-family unit, which will alleviate or eliminate unnecessary suffering and provide well-being, when possible.
Methods: An extensive search of the literature on suffering and distress in end-of-life patients was conducted. While the present review is not a systematic one, an in-depth search using the terms 'Suffering', 'Distress', End-of-Life', 'Palliative Care', and 'Terminal illness' was conducted using search engines such as PubMed, PsycINFO, MEDLINE, EBSCO-Host, OVID, and SciELO.
Results: Taking into account the compreh…
matched on Palliative Care (mesh), Terminal Care (mesh), Palliative Care (keyword), end of life (text), terminal illness (text)
Deer TR, Smith HS, Burton AW, Pope JE, Doleys DM, Levy RM, Staats PS, Wallace MS, Webster LR, Rauck RL, Cousins M, Center For Pain Relief, Inc (2011)meta-analysisMEDLINE-indexed journal, not yet read by usPain physician74 citations Comprehensive consensus based guidelines on intrathecal drug delivery systems in the treatment of pain caused by cancer pain.
Background: Chronic persistent pain as a result of terminal illness, either as a consequence of the disease or the necessary treatment, is common in patients with cancer. For these patients with moderate-to-severe intractable pain, intrathecal (IT) drug delivery systems may represent an effective option for pain management. Thus, IT drug delivery is a viable treatment strategy for both neuropathy and nociceptive pain in the cancer population. However, there is a scarcity of comprehensive guidelines in implanting IT drug delivery systems in the treatment of pain caused by cancer.
Objective: This article outlines consensus guidelines for the implementation of intrathecal therapy in patients with cancer-related pain and other end of life states causing pain. We highlight the multidisciplinary criteria that warrant careful consideration to ensure meaningful analgesia.
Methods: Evidence was c…
matched on end of life (text), terminal illness (text)
Preconditions for successful advance care planning in nursing homes: A systematic review.
Objectives: There is growing evidence of the potential effectiveness of advance care planning. Yet important knowledge gaps remain regarding the preconditions for successful implementation of advance care planning in the nursing home setting. We aim to identify the preconditions related to successful advance care planning in the nursing home setting. By specifying those, we would be able to make well-founded choices for the future design and planning of advance care planning intervention programs.
Design: A systematic review.
Data sources: PubMed, PsycINFO, EMBASE and CINAHL.
Review methods: Two authors independently screened publications. One author assessed methodological quality and extracted textual data, which was double-checked for a random sample. We extracted textual data and used thematic synthesis to identify "preconditions", defined as requirements, conditions and elements nec…
matched on Advance Care Planning (mesh), end of life (text)
Weathers E, O'Caoimh R, Cornally N, Fitzgerald C, Kearns T, Coffey A, Daly E, O'Sullivan R, McGlade C, Molloy DW (2016)systematic reviewMEDLINE-indexed journal, not yet read by usMaturitas134 citations Advance care planning: A systematic review of randomised controlled trials conducted with older adults.
Advance care planning (ACP), involving discussions between patients, families and healthcare professionals on future healthcare decisions, in advance of anticipated impairment in decision-making capacity, improves satisfaction and end-of-life care while respecting patient autonomy. It usually results in the creation of a written advanced care directive (ACD). This systematic review examines the impact of ACP on several outcomes (including symptom management, quality of care and healthcare utilisation) in older adults (>65years) across all healthcare settings. Nine randomised controlled trials (RCTs) were identified by searches of the CINAHL, PubMed and Cochrane databases. A total of 3646 older adults were included (range 72-88 years). Seven studies were conducted with community dwellers and the other two RCTs were conducted in nursing homes. Most studies did not implement a standardised …
matched on Advance Care Planning (mesh), end of life (text)
Barriers and facilitators for general practitioners to engage in advance care planning: a systematic review.
Objective: The aim of this systematic review is to identify the perceived factors hindering or facilitating GPs in engaging in advance care planning (ACP) with their patients about care at the end of life.
Design: Studies from 1990 to 2011 were found in four electronic databases (PubMed, CINAHL, EMBASE, PsycINFO); by contacting first authors of included studies and key experts; and searching through relevant journals and reference lists. Studies were screened, graded for quality, and analysed independently by two authors; those reporting the perception by GPs of barriers and facilitators to engagement in ACP were included.
Results: Eight qualitative studies and seven cross-sectional studies were included for data extraction. All barriers and facilitators identified were categorized as GP characteristics, perceived patient factors, or health care system characteristics. Stronger evidence …
matched on Advance Care Planning (mesh), end of life (text)
Flourishing at the end of life.
Flourishing is an increasingly common construct employed in the study of human wellbeing. But its appropriateness as a framework of wellbeing at certain stages of life is contested. In this paper, we consider to what extent it is possible for someone to flourish at the end of life. People with terminal illness often experience significant and protracted pain and suffering especially when they opt for treatments that prolong life. Certain aspects of human goods, however, that are plausibly constitutive of flourishing-such as meaning and purpose, deep personal relationships, and character and virtue-can be uniquely realised when life is ending. We argue that there is a qualified sense in which one can flourish at the end of life but that one must make important modifications to the criteria implicit in conventional conceptions of flourishing. We close with a discussion of the empirical ass…
matched on Palliative Care (mesh), Terminal Care (mesh), Terminally Ill (mesh), end of life (text), terminal illness (text)
Preloss grief in family caregivers during end-of-life cancer care: A nationwide population-based cohort study.
Objective: Severe grief symptoms in family caregivers during end-of-life cancer trajectories are associated with complicated grief and depression after the loss. Nevertheless, severe grief symptoms during end-of-life caregiving in caregivers to cancer patients have been scarcely studied. We aimed to explore associations between severe preloss grief symptoms in caregivers and modifiable factors such as depressive symptoms, caregiver burden, preparedness for death, and end-of-life communication.
Methods: We conducted a population-based prospective study of caregivers to 9512 patients registered with drug reimbursement due to terminal illness, and 3635 caregivers responded. Of these, 2865 caregivers to cancer patients completed a preloss grief scale (Prolonged Grief 13, preloss version). Associations with factors measured during end-of-life caregiving were analyzed using logistic regression…
matched on Hospice Care (mesh), Terminal Care (mesh), Terminally Ill (mesh), end of life (text), terminal illness (text)
Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands.
Objective: Advances in oncology increasingly result in protracted disease trajectories for patients with incurable cancer. In this disease phase, patients are aware of the incurable nature of cancer although they are not yet approaching the last phase of life. We explored the challenges for patients confronted with protracted incurable cancer.
Design: Ethnographic study (2015-2017) based on conversations with patients, observations at a day-care unit and a selection of information from the medical records of patients who died during the study period.
Setting: The day-care unit of a comprehensive cancer centre in the Netherlands.
Participants: Nineteen patients with stage IV breast cancer (in remission, >1 year after diagnosis) and 11 patients with stage IV lung-cancer (in remission, >6 months after diagnosis).
Results: In patients who had died during the study period, the treatment respo…
matched on Palliative Care (mesh), Palliative Care (keyword)
Palliative Care Phase: inter-rater reliability and acceptability in a national study.
Background: The concept of palliative care consisting of five distinct, clinically meaningful, phases (stable, unstable, deteriorating, terminal and bereavement) was developed in Australia about 20 years ago and is used routinely for communicating clinical status, care planning, quality improvement and funding.
Aim: To test the reliability and acceptability of revised definitions of Palliative Care Phase.
Design: Multi-centre cross-sectional study involving pairs of clinicians independently rating patients according to revised definitions of Palliative Care Phase.
Setting/participants: Clinicians from 10 Australian palliative care services, including 9 inpatient units and 1 mixed inpatient/community-based service.
Results: A total of 102 nursing and medical clinicians participated, undertaking 595 paired assessments of 410 patients, of which 90.7% occurred within 2 h. Clinicians rated 54…
matched on Palliative Care (mesh), Palliative Care (keyword)
Burke BL, Martens A, Faucher EH (2010)meta-analysisMEDLINE-indexed journal, not yet read by usPersonality and social psychology review : an official journal of the Society for Personality and Social Psychology, Inc313 citations Two decades of terror management theory: a meta-analysis of mortality salience research.
A meta-analysis was conducted on empirical trials investigating the mortality salience (MS) hypothesis of terror management theory (TMT). TMT postulates that investment in cultural worldviews and self-esteem serves to buffer the potential for death anxiety; the MS hypothesis states that, as a consequence, accessibility of death-related thought (MS) should instigate increased worldview and self-esteem defense and striving. Overall, 164 articles with 277 experiments were included. MS yielded moderate effects (r = .35) on a range of worldview- and self-esteem-related dependent variables (DVs), with effects increased for experiments using (a) American participants, (b) college students, (c) a longer delay between MS and the DV, and (d) people-related attitudes as the DV. Gender and self-esteem may moderate MS effects differently than previously thought. Results are compared to other reviews …
matched on Attitude to Death (mesh)
Kaasa S, Loge JH, Aapro M, Albreht T, Anderson R, Bruera E, Brunelli C, Caraceni A, Cervantes A, Currow DC, Deliens L, Fallon M, Gómez-Batiste X, Grotmol KS, Hannon B, Haugen DF, Higginson IJ, Hjermstad MJ, Hui D, Jordan K, Kurita GP, Larkin PJ, Miccinesi G, Nauck F, Pribakovic R, Rodin G, Sjøgren P, Stone P, Zimmermann C, Lundeby T (2018)reviewMEDLINE-indexed journal, not yet read by usThe Lancet. Oncology529 citations Integration of oncology and palliative care: a Lancet Oncology Commission.
Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and…
matched on Palliative Care (mesh), Attitude to Death (mesh), end of life (text)
Davidson PM (2007)reviewMEDLINE-indexed journal, not yet read by usCurrent opinion in supportive and palliative care23 citations Difficult conversations and chronic heart failure: do you talk the talk or walk the walk?
Purpose of review: Effective communication is critical for palliative and supportive care in heart failure. This article contains a review of available information to assist clinicians in undertaking discussions regarding prognosis, treatment decisions and advance care planning.
Recent findings: Emerging from a range of studies at the end of life is that patients and their families appreciate honesty and do not want to be abandoned by healthcare providers. Further, the receptivity of patients and their carers to information is highly variable, underscoring the importance of an individualized approach.
Summary: When having these difficult conversations, clinicians need to assess the individual's need and wishes for information as well as their social and cultural background. They also need to consider the setting, timing and content of the discussion, as well as strategies to promote copi…
matched on Palliative Care (mesh), Attitude to Death (mesh), end of life (text)
Development and validation of a questionnaire to detect behavior change in multiple advance care planning behaviors.
Introduction: Advance directives have traditionally been considered the gold standard for advance care planning. However, recent evidence suggests that advance care planning involves a series of multiple discrete behaviors for which people are in varying stages of behavior change. The goal of our study was to develop and validate a survey to measure the full advance care planning process.
Methods: The Advance Care Planning Engagement Survey assesses "Process Measures" of factors known from Behavior Change Theory to affect behavior (knowledge, contemplation, self-efficacy, and readiness, using 5-point Likert scales) and "Action Measures" (yes/no) of multiple behaviors related to surrogate decision makers, values and quality of life, flexibility for surrogate decision making, and informed decision making. We administered surveys at baseline and 1 week later to 50 diverse, older adults from…
matched on Terminal Care (mesh), Advance Care Planning (mesh)
Navigating difficult conversations.
Breaking bad news and navigating difficult conversations is challenging and a frequent occurrence in surgical oncology practice. Cancer communication recommendations are guided by ethical principles, legal precedence, and emerging evidence regarding patient preference and efficacy of communication tools. Evidence continues to mount supporting a patient-centered communication approach and a model of shared decision making. Likewise, physician training in effective patient-centered cancer communication continues to evolve.
matched on Palliative Care (mesh), Terminal Care (mesh)
The model of Palliative Care in the perinatal setting: a review of the literature.
Background: The notion of Palliative Care (PC) in neonatal and perinatal medicine has largely developed in recent decades. Our aim was to systematically review the literature on this topic, summarise the evolution of care and, based on the available data, suggest a current standard for this type of care.
Methods: Data sources included Medline, the Cochrane Library, CINAHL, and the bibliographies of the papers retrieved. Articles focusing on neonatal/perinatal hospices or PC were included. A qualitative analysis of the content was performed, and data on the lead author, country, year, type of article or design, and direct and indirect subjects were obtained.
Results: Among the 1558 articles retrieved, we did not find a single quantitative empirical study. To study the evolution of the model of care, we ultimately included 101 studies, most of which were from the USA. Fifty of these were c…
matched on Hospice Care (mesh), Palliative Care (mesh)
van der Steen JT (2010)reviewMEDLINE-indexed journal, not yet read by usJournal of Alzheimer's disease : JAD159 citations Dying with dementia: what we know after more than a decade of research.
Death with dementia is increasingly common. Although prognostication is difficult, it is an incurable life-limiting illness for which palliative care for the patient is often appropriate. Dementia patients are otherwise at risk of overtreatment with burdensome and possibly non-beneficial interventions and undertreatment of symptoms. Although recent studies indicate encouraging trends of improved palliative care, little evidence supports effectiveness of specific treatments. As of January 2010, at least 45 studies, almost all performed after 2000, have reported on treatment, comfort, symptom burden, and families' satisfaction with care. Over half (25; 56%) of these studies were in US settings, and most were small or retrospective. Few randomized trials and prospective observational studies have been performed so far, but several promising studies have been completed recently or are underw…
matched on Hospice Care (mesh), Palliative Care (mesh)
Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement.
Objective: Caregivers of terminally ill patients may experience anticipatory grief or low levels of preparedness for the patient's impending death. Both concepts are related to a forewarning of the impending loss. Anticipatory grief has been suggested to be grief work before the loss, which would improve bereavement outcome, but recent studies indicate a negative impact. Hence, this review systematically investigates key issues relating to anticipatory grief and preparedness for the death; definitions, measurement tools, and potential effects on caregiver outcome.
Methods: We used a systematic approach (PRISMA statement). Databases were searched for publications during 1990-2015. Studies on adult caregivers of terminally ill adult patients were included if anticipatory grief or preparedness was assessed by a measurement tool.
Results: Anticipatory grief was captured in the definition "pr…
matched on end of life (text), terminal illness (text)
Korfage IJ, Carreras G, Arnfeldt Christensen CM, Billekens P, Bramley L, Briggs L, Bulli F, Caswell G, Červ B, van Delden JJM, Deliens L, Dunleavy L, Eecloo K, Gorini G, Groenvold M, Hammes B, Ingravallo F, Jabbarian LJ, Kars MC, Kodba-Čeh H, Lunder U, Miccinesi G, Mimić A, Ozbič P, Payne SA, Polinder S, Pollock K, Preston NJ, Seymour J, Simonič A, Thit Johnsen A, Toccafondi A, Verkissen MN, Wilcock A, Zwakman M, van der Heide A, Rietjens JAC (2020)randomised controlled trialMEDLINE-indexed journal, not yet read by usPLoS medicine101 citations Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.
Background: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce.
Methods and findings: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised ad…
matched on Advance Care Planning (mesh), end of life (text)
A longitudinal, randomized, controlled trial of advance care planning for teens with cancer: anxiety, depression, quality of life, advance directives, spirituality.
Purpose: To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
Methods: Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion.
Results: Acceptabi…
matched on Advance Care Planning (mesh), end of life (text)
Family-centered advance care planning for teens with cancer.
Importance: Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied.
Objective: To examine the efficacy of family-centered ACP.
Design and setting: Two-group randomized controlled trial in a pediatric oncology program.
Participants: Sixty adolescents aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study between January 17, 2011, and March 29, 2012.
Intervention: Thirty dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information.
Main outcome measures: Statement of treatment preferences and Decisional Conflict Scale score.
Results:…
matched on Advance Care Planning (mesh), end of life (text)
Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, Barnoud D, Bleichner G, Bruel C, Choukroun G, Curtis JR, Fieux F, Galliot R, Garrouste-Orgeas M, Georges H, Goldgran-Toledano D, Jourdain M, Loubert G, Reignier J, Saidi F, Souweine B, Vincent F, Barnes NK, Pochard F, Schlemmer B, Azoulay E (2007)randomised controlled trialMEDLINE-indexed journal, not yet read by usThe New England journal of medicine820 citations A communication strategy and brochure for relatives of patients dying in the ICU.
Background: There is a need for close communication with relatives of patients dying in the intensive care unit (ICU). We evaluated a format that included a proactive end-of-life conference and a brochure to see whether it could lessen the effects of bereavement.
Methods: Family members of 126 patients dying in 22 ICUs in France were randomly assigned to the intervention format or to the customary end-of-life conference. Participants were interviewed by telephone 90 days after the death with the use of the Impact of Event Scale (IES; scores range from 0, indicating no symptoms, to 75, indicating severe symptoms related to post-traumatic stress disorder [PTSD]) and the Hospital Anxiety and Depression Scale (HADS; subscale scores range from 0, indicating no distress, to 21, indicating maximum distress).
Results: Participants in the intervention group had longer conferences than those in th…
matched on Terminally Ill (mesh), end of life (text)
A randomized, controlled trial to improve advance care planning among patients undergoing cardiac surgery.
Background: Although many healthcare providers and researchers consider it necessary to assist patients with end-stage chronic illnesses to plan for the end of life, they tend to avoid discussing end-of-life issues with patients before major surgery. Consequently, surgical patients and their families generally have insufficient knowledge to make plans in case of life-threatening complications.
Objective: The objective of this study was to evaluate short-term effects of Patient-Centered Advance Care Planning (PC-ACP).
Design and subjects: Thirty-two dyads of patients undergoing cardiac surgery and their surrogates were randomly assigned to receive either the PC-ACP intervention (PC-ACP) or usual care.
Measures: Measures studied were patient-surrogate congruence regarding goals for future medical care, patient and surrogate knowledge of advance care planning and anxiety, and patient decisi…
matched on Advance Care Planning (mesh), end of life (text)
Hill L, Prager Geller T, Baruah R, Beattie JM, Boyne J, de Stoutz N, Di Stolfo G, Lambrinou E, Skibelund AK, Uchmanowicz I, Rutten FH, Čelutkienė J, Piepoli MF, Jankowska EA, Chioncel O, Ben Gal T, Seferovic PM, Ruschitzka F, Coats AJS, Strömberg A, Jaarsma T (2020)guidelineMEDLINE-indexed journal, not yet read by usEuropean journal of heart failure135 citations Integration of a palliative approach into heart failure care: a European Society of Cardiology Heart Failure Association position paper.
The Heart Failure Association of the European Society of Cardiology has published a previous position paper and various guidelines over the past decade recognizing the value of palliative care for those affected by this burdensome condition. Integrating palliative care into evidence-based heart failure management remains challenging for many professionals, as it includes the identification of palliative care needs, symptom control, adjustment of drug and device therapy, advance care planning, family and informal caregiver support, and trying to ensure a 'good death'. This new position paper aims to provide day-to-day practical clinical guidance on these topics, supporting the coordinated provision of palliation strategies as goals of care fluctuate along the heart failure disease trajectory. The specific components of palliative care for symptom alleviation, spiritual and psychosocial su…
matched on Palliative Care (mesh), Palliative Care (keyword)
Plusnin N, Pepping CA, Kashima ES (2018)systematic reviewMEDLINE-indexed journal, not yet read by usPersonality and social psychology review : an official journal of the Society for Personality and Social Psychology, Inc28 citations The Role of Close Relationships in Terror Management: A Systematic Review and Research Agenda.
Terror management theory outlines how humans seek self-esteem and worldview validation to manage death-related anxiety. Accumulating evidence reveals that close relationships serve a similar role. However, to date, there has been no synthesis of the literature that delineates when close relationships buffer mortality concerns, under what conditions, on which specific outcomes, and for whom. This systematic review presents over two decades of research to address these questions. Findings from 73 reviewed studies revealed that close relationships serve an important role in buffering death-related anxiety. A range of dispositional and situational moderating factors influence either the activation or inhibition of relational strivings to manage heightened death awareness, the most influential being attachment, gender, and relationship-contingent self-esteem. These findings were integrated in…
matched on Attitude to Death (mesh)
When a parent dies - a systematic review of the effects of support programs for parentally bereaved children and their caregivers.
Background: The death of a parent is a highly stressful life event for bereaved children. Several studies have shown an increased risk of mental ill-health and psychosocial problems among affected children. The aims of this study were to systematically review studies about effective support interventions for parentally bereaved children and to identify gaps in the research.
Methods: The review's inclusion criteria were comparative studies with samples of parentally bereaved children. The focus of these studies were assessments of the effects on children of a bereavement support intervention. The intervention was directed towards children 0-18 years; but it could also target the children's remaining parent/caregiver. The study included an outcome measure that dealt with effects of the intervention on children. The following electronic databases were searched up to and including November 2…
matched on Attitude to Death (mesh)