Complicated grief (CG) poses significant physical, psychological, and economic risks to bereaved family caregivers. An integrative review of the literature published 2009-2018 on CG associated with caregiving was performed using PubMed, PsychINFO, and Web of Science. The search returned 1428 articles, of which 32 were included in the review. Sixteen studies described risk and protective factors and 16 described interventions for CG. Caregiver-related risk factors included fewer years of education, depression, anxiety, poor physical health, and maladaptive dependency and attachment traits. Additional risk factors included lower perceived social support, family conflict at end-of-life, and family having difficulty accepting death. Care recipient-related risk factors are younger age, fear of death, and place of death. Protective factors included hospice utilization in reducing fear of death, high pre-bereavement spiritualty, and satisfaction with palliative care. Complicated grief treatment was the most widely-studied intervention. Social Workers and other clinicians can use this information to identify family caregivers at increased risk for CG and refer or implement an early intervention to lessen its impact.
Ces recommandations de la Haute Autorité de Santé ont pour objectifs de mieux définir les modalités d'utilisation des traitements médicamenteux, en particulier hors AMM, en situation palliative et phase terminale chez l'adulte :
- pour l'antalgie des douleurs rebelles ou la prévention des douleurs rebelles provoquées ;
- pour la sédation, qu'elle soit proportionnée ou profonde et continue maintenue jusqu'au décès ;
- y compris, le cas échéant, les modalités spécifiques au domicile.
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Cette manifestation consacrée aux enfants, adolescents et jeunes adultes orphelins est une opportunité de mettre la lumière sur leur situation sociale et leur vécu. Placé sous le signe de l’action, cet événement est l’occasion de prendre connaissance des résultats inédits des sept projets de recherche soutenus par la Fondation OCIRP, du partenariat initié avec l'Institut national d'études démographiques (INED) et de l'enquête « École et orphelins », programme interne du pôle Études et recherche de la fondation. Cet événement est enfin l’occasion d’ouvrir un espace de débat entre chercheurs-es et acteurs mobilisés et concernés : praticiens, professionnels de l’action sociale et de la santé, enseignants et personnels de l’éducation, chercheurs, acteurs associatifs, responsables politiques, journalistes, représentants d’institutions publiques et d’organismes privés, et en particulier parents, enfants, adolescents et jeunes adultes orphelins et leurs proches.
Background: Unplanned readmissions or emergency visits (EVs) after discharge from hospital are frequent in patients in palliative care. Strategies to anticipate and prevent rapid deterioration of health are needed.
Objective: Assessing feasibility and predictive ability of remote monitoring using wearables.
Design: Prospective observational feasibility study in a single center.
Setting/Subjects: Thirty cancer patients with an estimated life expectancy of >8 weeks to <12 months, aged >18 years and being discharged from inpatient to outpatient care were included.
Measurements: Patients were provided with a smartphone, including the preinstalled "Activity Monitoring" application and a sensor-equipped bracelet. Follow-up was 12 weeks. Both devices recorded several features (e.g., vital signs). Visual analog scale (VAS) for pain and distress was reported once daily and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) once weekly. Statistical methods were applied to explore relationship between sensor data, self-reports, and EVs or readmissions or death.
Results: Between February 2017 and May 2018, 30 patients were included. Twenty-five of 30 participants (83%) completed 12 weeks of follow-up. On average, bracelet was worn on 53% and smartphone on 85% of study days. Completion rate of daily digital questionnaires for subjective ratings was 73%. Eight unplanned hospital readmissions occurred. Ratings of pain, distress, and QLQ-C30 scores were not associated with readmission, whereas resting heart rate, resting heart rate variability, as well as speed of steps differed significantly in patients with and without readmission.
Conclusions: Monitoring of palliative cancer patients using wearables is feasible. First results indicate that mobile health features might be promising biomarkers to predict unplanned readmissions.
BACKGROUND: An increasing number of the ageing population worldwide is at risk of becoming frail and incapacitated. This has the potential to impact not only on the well-being of individuals but also on the sustainability of healthcare systems.
OBJECTIVE: The aim of this study was to explore the views and experiences of frailty from the perspective of primary care professionals, including nurses, who work directly with older people within the community.
METHODS: A qualitative approach with a descriptive phenomenological methodology was used, which focused on exploration of primary care professionals' current experiences of early detection and prevention of the onset of frailty. Four multi-professional focus groups were held with a total of thirty-three primary care professionals who worked with older people as part of their daily role. Participants included district nurses, general practitioners, home care workers, physiotherapists and social workers.
RESULTS: Professional views encompassed typical patterns of ageing, loneliness, presence of comorbidity, disability and end of life, with social conditions prevalent in most frailty they encountered. Three main themes emerged: the psychosocial nature of frailty, late detection of frailty and barriers to the feasibility of prevention. Physical frailty was considered a constituent part of ageing, which recognised the presence of a skills gap related to the detection of the early signs of frailty. Present health and social care systems are not designed to prevent frailty, and the competencies required by health and social care professionals are not usually included as part of their training curricula. This may hinder opportunities to intervene to prevent associated decline in ability of older adults.
CONCLUSIONS: To enhance the early assessment of frailty and the planning of preventive multi-factorial interventions in primary care and community settings, training and effective detection strategies should be incorporated into the role and daily care activities of primary care professionals.
IMPLICATIONS FOR PRACTICE: Using a multidimensional assessment instrument can help primary care professionals to identify older people who are frail or may become frail. In order to be able to carry out this properly strong inter-professional collaboration is needed. In addition, interventions aimed at preventing frailty or adverse outcomes of frailty should be tailor-made and thus should meet the needs and wishes of an older person.
Trois caractéristiques des soins palliatifs pédiatriques sont susceptibles de fragiliser les soignants. Il s’agit du processus complexe d’identification à l’enfant, de la confrontation avec la mort d’un enfant et enfin de l’enjeu lié à la triade enfant/parents/soignant pouvant conduire à l’épuisement professionnel. Quelques possibilités pour prévenir ces phénomènes sont étudiés.
Frailty is an emerging global health burden, with major implications for clinical practice and public health. The prevalence of frailty is expected to rise alongside rapid growth in the ageing population. The course of frailty is characterised by a decline in functioning across multiple physiological systems, accompanied by an increased vulnerability to stressors. Having frailty places a person at increased risk of adverse outcomes, including falls, hospitalisation, and mortality. Studies have shown a clear pattern of increased health-care costs and use associated with frailty. All older adults are at risk of developing frailty, although risk levels are substantially higher among those with comorbidities, low socioeconomic position, poor diet, and sedentary lifestyles. Lifestyle and clinical risk factors are potentially modifiable by specific interventions and preventive actions. The concept of frailty is increasingly being used in primary, acute, and specialist care. However, despite efforts over the past three decades, agreement on a standard instrument to identify frailty has not yet been achieved. In this Series paper, we provide an overview of the global impact and burden of frailty, the usefulness of the frailty concept in clinical practice, potential targets for frailty prevention, and directions that need to be explored in the future.
L'auteure analyse les facteurs qui peuvent accroître la vulnérabilité des personnes intellectuellement déficiente. Elle détaille ensuite les éléments qui permettent de protéger ces personnes et de limiter leur risque d'exposition à la maltraitance.
Le nombre de morts inattendues du nourrisson (MIN) a beaucoup diminué au cours des années 1990, mais les chiffres stagnent actuellement, alors que de nombreux décès seraient encore évitables. L’association Naître et vivre participe activement depuis plus de trente ans à sa prévention et œuvre, en collaboration avec les centres de référence de la MIN, à la création et à la diffusion d’outils de prévention multiples qui ont évolué au cours du temps.
BACKGROUND: Patients with advanced cancer are increasingly discharged from inpatient settings following focused symptom management admissions. Thromboprophylaxis (TP) is recommended for patients with cancer admitted to acute care settings; less is known about TP use in palliative care (PC) settings. This study explored the opinions of Canadian medical oncologists (MO) and PC physicians regarding the use of TP for inpatients with advanced cancer.
METHODS: A fractional factorial survey designed to evaluate the impact of patient factors (age, clinical setting, reason for admission, pre-admission performance status (Eastern Cooperative Oncology Group; ECOG), and risk of bleeding on anticoagulation) and physician demographics on recommending TP was administered by email to Canadian MO and PC physicians. Each respondent received eight vignettes randomly selected from a set of 32. Hierarchical regression was used to evaluate the odds of prescribing TP adjusted for patient factors.
RESULTS: 606 MO and 491 PC physicians were surveyed; response rates were 11.1% and 15.0%, respectively. MO were predominantly male (59.7%); PC female (60.3%); most worked in academic environments (90.3% MO; 73.9% PC). Multivariable hierarchical logistic regression demonstrated that all patient factors except age were associated with prescribing TP (ORs range: from 1.34 (95% CI 1.01 to 1.77) for good ECOG, to 2.53 (95% CI 1.9 to 3.37), for reversible reason for admission). Controlling for these factors, medical specialty was independently associated with recommending TP (OR for MO 2.09 (95% CI 1.56 to 2.8)).
CONCLUSIONS: MO have higher odds of recommending TP for inpatients with advanced cancer than PC physicians. Further research exploring the drivers of these differing practices is warranted.
Although male suicide has received research attention, the gendered experiences of men bereaved by male suicide are poorly understood. Addressing this knowledge gap, we share findings drawn from a photovoice study of Canadian-based men who had lost a male friend, partner, or family member to suicide. Two categories depicting the men's overall account of the suicide were inductively derived: (a) unforeseen suicide and (b) rationalized suicide. The "unforeseen suicides" referred to deaths that occurred without warning wherein participants spoke to tensions between having no idea that the deceased was at risk while reflecting on what they might have done to prevent the suicide. In contrast, "rationalized suicides" detailed an array of preexisting risk factors including mental illness and/or substance overuse to discuss cause-effect scenarios. Commonalities in unforeseen and rationalized suicides are discussed in the overarching theme, "managing emotions" whereby participants distanced themselves, but also drew meaning from the suicide.
Background: care of patients with a permanently unsafe swallow who are inappropriate for tube feeding is challenging. Eating and drinking with acknowledged risk (EDAR) may be an appropriate strategy but without clear decision making and communication patients may spend unnecessarily long ‘nil by mouth’ (NBM), they or their family may experience significant anxieties and advance care plans may not be made.
Methods: the FORWARD (Feeding via the Oral Route With Acknowledged Risk of Deterioration) care bundle was sequentially co-designed and embedded across different in-patient clinical services using ‘plan-do-study-act’ methodology to systematise best practice. Care before and after FORWARD’s implementation was evaluated using a time-series analysis of 305 ‘EDAR patients’ (19 in 6 months pre-FORWARD; 42 in a 12-month ‘pilot’; 244 patients in the subsequent 27 months).
Results: median (IQR) days patients were NBM without an alternative feeding route reduced significantly from 2 (1–4) pre-FORWARD to 0 (0–2) in the ‘pilot’ and 0 (0) post-‘pilot’ (P < 0.05). G-chart analysis demonstrated sustained performance across time and different clinical settings. Implementation of FORWARD significantly improved documentation of capacity assessment (42% 98%), discussions with next of kin (47% 98%) and onward communication of feeding plans (67% 81%). In wards where FORWARD was introduced, rate of aspiration pneumonia (a ‘balancing measure’ sensitive to harm associated with EDAR) increased at half the rate of dysphagia (0.8%/year versus 1.6%/year).
Conclusion: the FORWARD care bundle supported complex decision-making around EDAR in patients with persistent dysphagia. The benefits of FORWARD were shown to be sustained over time and in a wide in-patient context.
Efforts to clarify suicide terminology fail to address nuances in suicide-related communication, often relying on poorly-defined terms or implying communication exists primarily as manipulation. In the present paper, we review examples from existing literature and explore how personal suicide-related communication differs from prevention and exposure communication. We also separate definitions for five common types of personal-suicide-related communication: (a) suicide-related disclosure, (b) suicide-related notification, (c) unintended suicide-related communication, (d) coerced suicide-related communication, and (e) conditional suicide-related communication. Finally, we provide specific ways in which standardized definitions can enhance both research and clinical efforts in the future.
BACKGROUND/OBJECTIVES: The Optimizing Patient Transfers, Impacting Medical Quality, Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) project is a successful, multicomponent demonstration project to reduce potentially avoidable hospitalizations of long-stay nursing facility residents. Systematic advance care planning (ACP) is a core component of the intervention, based on research suggesting ACP is associated with decreased hospitalizations of nursing facility residents. The purpose of this study was to describe associations between ACP documentation resulting from the OPTIMISTIC intervention and hospitalizations.
DESIGN: Specially trained project nurses were embedded in 19 nursing facilities and systematically engaged in ACP as part of a larger demonstration project.
PARTICIPANTS: Residents (n = 1482) enrolled in the demonstration project for a minimum of 30 days between January 1, 2015, and June 30, 2016.
MEASUREMENTS: ACP status: (1) Physician Orders for Scope of Treatment (POST) comfort measures or do not hospitalize (DNH) orders; (2) ACP orders with no hospitalization limit (eg, code status only); and (3) no ACP (potentially avoidable and all-cause hospitalizations per 1000 resident days).
RESULTS: Residents with POST comfort measures/DNH orders (33.2% or n = 493) were less likely than residents with no ACP (14.7% or n = 218) to experience a potentially avoidable hospitalization (P = .001) or all-cause hospitalization (P = .001). These differences became statistically nonsignificant after adjusting for age, functional status, and cognitive functioning.
CONCLUSION: In this successful multicomponent demonstration project to reduce potentially avoidable hospitalizations, ACP outcomes were not associated with hospitalization rates of nursing facility residents after adjusting for resident characteristics. These findings highlight the challenge of measuring the contributions of individual components of complex, multicomponent interventions. Associations between lower hospitalization rates and ACP completion may be influenced by contextual factors, such as clinical expertise and resources to manage acute conditions leading to hospitalization, in addition to interventions to increase ACP.
INTRODUCTION: Multiple studies have questioned the benefit of neutropenic diets in decreasing infections in patients with cancer, but recent surveys showed that such diets are still prescribed. In this study, we sought to evaluate the effectiveness of neutropenic diet in decreasing infection and mortality in neutropenic patients with cancer with neutropenia. This review is an update of a previously published systematic review.
MATERIALS AND METHODS: We searched different databases to identify comparative studies that investigated the effect of neutropenic diet compared with regular diet in neutropenic adults and children with cancer. We conducted random-effects meta-analyses using the Der-Simonian and Laird method to pool treatment effects from included studies. Outcomes of interest were mortality, bacteremia/fungemia, major infections, quality of life, and the composite outcome for neutropenic fever and/or infection.
RESULTS: We included six studies (five randomised) with 1116 patients, with 772 (69.1%) having underwent haematopoietic cell transplant. There was no statistically significant difference between neutropenic diet and regular diet in the rates of major infections (relative risk [RR] 1.16; 95% CI 0.94 to 1.42) or bacteremia/fungemia (RR 0.96; 95% CI 0.60 to 1.53). In haematopoietic cell transplant patients, neutropenic diet was associated with a slightly higher risk of infections (RR 1.25; 95% CI 1.02 to 1.54). No difference in mortality was seen between neutropenic diet and regular diet (RR 1.08, 95% CI 0.78 to 1.50).
CONCLUSION: There is currently no evidence to support the use of neutropenic diet or other food restrictions in neutropenic patients with cancer. Patients and clinicians should continue to follow the safe food-handling guidelines as recommended by the U.S. Food and Drug Administration.
OBJECTIVE: Older people approaching the end of life are at high risk for adverse drug reactions. Approaching end of life should change the therapeutic aims, triggering a reduction in the number of drugs. The main aim of this study was to describe the preventive and symptomatic drug treatments prescribed to patients discharged from internal medicine and geriatric wards, with limited life expectancy. The secondary aim was to describe the potentially severe DDIs.
MATERIALS AND METHODS: We analyzed Registry of Polytherapies Societa Italiana di Medicina Interna (REPOSI), a network of internal medicine and geriatric wards, to describe the drug therapy of patients discharged with limited life expectancy.
RESULTS: The study sample comprised 55 patients discharged with limited life expectancy. Patients with at least one preventive medication that could be considered for de-prescription at end-of-life were significantly fewer from admission to discharge (30; 54.5% and 21; 38.2%, p = 0.02). ACE inhibitors, angiotensin II receptor blockers, calcium channel blockers, lipid-lowering drugs and clonidine were the most frequent potentially avoidable medications prescribed at discharge, followed by xanthine oxidase inhibitors and drugs to prevent fractures. Thirty-seven (67.3%) patients were also exposed to at least one potentially severe drug-drug interaction at discharge.
CONCLUSION: Hospital discharge is associated with small reductions in the use of commonly prescribed preventive medications in patients discharged with limited life expectancy. Cardiovascular drugs are the most frequent potentially avoidable preventive medications. A consensus framework, or shared criteria for potentially inappropriate medication in elderly patients with limited life expectancy could be useful to further improve drug prescription.
BACKGROUND: Breast cancer is common among Ghanaian women. Late stage presentation has been credited to knowledge deficit and lack of breast cancer prevention and early detection services for women.
OBJECTIVE: This study aimed to develop a model to facilitate the integration of breast cancer prevention and early detection into cancer palliative care.
METHOD: This study used synthesized concepts emerging from a single case study research. The case was a tertiary health care facility, embedded with sub-units of analysis. Mixed-method approach was used to collect data from 102 participants. The study examined the experiences and views of the participants on breast cancer and screening pathways in Ghana. Thematic analysis and descriptive statistics ware used to analyze the qualitative and quantitative data respectively. This was followed with a cross-case analysis across the sub-units of analysis. A theory development approach was further used towards the development of a model, following three steps: concept analysis, statement synthesis and theory synthesis.
RESULTS: Six key concepts synthesized from the data were used to develop the model: initiate and sustain breast cancer prevention and early detection program, collaboration of health professionals, patients, families and micro-communities, conducive environment of the health care facility and needed resources, actions, services, and lastly diffusing innovation into the community through agents.
CONCLUSION: A model has been developed based on the experiences shared by women diagnosed with advanced breast cancer, their first degree relatives, micro-communities as well as clinicians working in a palliative care setting. This model will aid clinicians to provide breast cancer education, teach breast self-examination and offer clinical breast examination to families and micro-communities of advanced breast cancer patients receiving supportive care in a resource-limited setting.
BACKGROUND: Patients with advanced cancer have an elevated risk of venous thromboembolism. Increasingly, patients are admitted to palliative care settings for brief admissions, with greater numbers of discharges (vs deaths) reported internationally. There is limited guidance around the use of thromboprophylaxis or incidence of venous thromboembolism for these patients.
AIM: The aim of this study was to review the use of thromboprophylaxis as well as incidence of venous thromboembolism and bleeding in palliative care units or residential hospices for patients with advanced cancer.
DESIGN: A systematic review using Cochrane methods.
DATA SOURCES: Medline, Embase and the Cochrane Library were searched up to 28 September 2018 along with a grey literature search; the reference lists of selected papers were hand-searched. Inclusion criteria were original papers assessing thromboprophylaxis use in palliative care units or residential hospices for adult inpatients with cancer. Two reviewers independently selected and appraised papers using a tool designed for disparate data. Heterogeneity in study design made a meta-analysis not possible.
RESULTS: A total of 11 full-text papers (9 quantitative and 2 qualitative) and 11 abstracts were included. Thromboprophylaxis use ranged between 4% and 53%; venous thromboembolism rates between 0.5% and 20%; and bleeding incidence was between 0.01% and 9.8%. Risk assessment tools were used infrequently and adherence to international thromboprophylaxis guidelines ranged between 5% and 71%. Physician opinions differed around the use of thromboprophylaxis; patients were largely accepting of thromboprophylaxis if it was offered.
CONCLUSION: There is limited evidence around the optimal use of thromboprophylaxis for patients with advanced cancer admitted to palliative care settings. Although some patients may derive benefit, further research in this area is warranted.
Objectives: Physicians working with palliative patients have a substantial risk of emotional exhaustion because of their daily confrontation with suffering and death. Common concerns include alexithymia, high stress, low perceived social support and a greater burnout risk. This longitudinal study aimed to evaluate the effectiveness of Balint training in preventing the development of these symptoms in these medical professionals. Material and Methods: The design of the study was longitudinal. A group of 69 physicians working with palliative patients from 5 county hospitals in Romania (33 men, 36 women) participated in the study. Out of them, 31 joined and systematically attended a local Balint group whereas the others did not participate in such a group, either during the study or previously. They were given, both at the beginning (2015) and at the end of the study (2017), 4 psychometric instruments assessing alexithymia (Bagby’s Toronto Alexithymia Scale), perceived stress (Cohen and Williamson’s Perceived Stress Scale), social support (Duke-UNC Functional Social Support Questionnaire) and burnout (Maslach Burnout Inventory). A split-plot ANOVA analysis was used for evaluating the significance of Balint groups participation, with gender and age considered as auxiliary variables.
Results: In the study group, Balint training significantly improved the scores of global burnout (F(1, 64) = 25.104, p < 0.0001), 2 of its components (emotional exhaustion (F(1, 64) = 18.390, p < 0.0001) and depersonalization (F(1, 64) = 10.957, p < 0.002), alexithymia (F(1, 64) = 3.461, p < 0.0001) and perceived social support (F(1, 64) = 57.883, p < 0.0001), but not the scores of perceived stress and low personal accomplishment. Gender had an additional contribution in decreasing alexithymia (F(1, 64) = 7.436, p < 0.009) and increasing perceived social support (F(1, 64) = 15.426, p < 0.0001), with higher effects in men. Conclusions: This study points to the potential usefulness of Balint training in addressing alexithymia and burnout, and in improving perceived social support among physicians working with palliative patients. As the Balint method is easily understood and does not require special investments, it could represent a cost-effective instrument of addressing job-related psychological risks.
OBJECTIVE: Delirium is a frequent and severe complication of serious pediatric illness. Development of a nonpharmacologic approach to prevent pediatric delirium may improve short- and long-term outcomes in children and their families. In this brief report, we describe the development of a quality improvement project designed to methodically promote the family member's engagement, comforting, and orienting activities with their critically ill child to decrease delirium rates.
METHOD: We created a developmentally specific Delirium Prevention Toolkit for families. In a feasibility pilot, March through June 2016, we offered the kit to 15 patients and their families. On discharge, families were asked to describe use of the toolkit and whether or not it was helpful for them.
RESULTS: Twelve of 15 patients and families used various elements of the toolkit, particularly the headphones, music, and games; no one regularly used the blank journal. All reported that it was easy and helpful to have as support for their stay in the pediatric intensive care unit.Significance of results: This pilot demonstrated practicality of a nonpharmacologic delirium prevention toolkit in the pediatric intensive care unit, and satisfaction from patients and families.