Background: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support.
Aims and Objectives: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies).
Design: This was a cross-sectional survey of conference delegates.
Methods: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments.
Results: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%).
Conclusions: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs.
Relevance to clinical practice: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered.
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotional impact of, and grief reactions to, a child's death in PICU trainee doctors, along with coping strategies they used.
Methods: In a prospective, cross-sectional, observational study, qualitative and quantitative data were recorded on anonymised, written questionnaires. Grief severity was assessed using the Texas Revised Inventory of Grief. Emotional impact was assessed using the shortened Impact of Event Scale. The BriefCOPE tool was used to assess coping strategies. Qualitative data was analysed using conventional content analysis. Data are presented as median (inter-quartile range) or number (%).
Results: All invited trainee doctors (23 anaesthetists; 5 paediatricians) completed the questionnaire (age, 30 [29-34] yr; 13/28 [46%] female). Two (7%) doctors experienced severe grief (Texas Revised Inventory of Grief score <39), with five (18%) doctors severely affected by the deaths as measured by the Impact of Event Scale. Qualitative analysis revealed prominent themes of sadness, helplessness, guilt, shock, and concern for the bereaved family. There was limited use of coping strategies. Speaking with another trainee doctor was the principal coping strategy. Requests for debriefing sessions, greater psychological support and follow-up with the patient's family were frequently suggested.
Conclusions: Paediatric deaths evoke significant grief and emotional reactions in a subset of PICU trainee doctors. Trainee PICU doctors highlighted a lack of professional support and tailored debriefs.
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes.
Methods: A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria.
Results: Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases.
Conclusion: Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants.
Objective: The aim of this study was to determine whether do-not-resuscitate (DNR) orders affect outcomes in patients with sepsis admitted to intensive care unit (ICU).
Design: This is a retrospective observational study.
Participants: We enrolled 796 consecutive adult intensive care patients at Kaohsiung Chang Gung Memorial Hospital, a 2700-bed tertiary teaching hospital in southern Taiwan. A total of 717 patients were included.
Main measures: Clinical factors such as age, gender and other clinical factors possibly related to DNR orders and hospital mortality were recorded.
Key results: There were 455 patients in the group without DNR orders and 262 patients in the group with DNR orders. Within the DNR group, patients were further grouped into early (orders signed on intensive care day 1, n=126) and late (signed after day 1, n=136). Patients in the DNR group were older and more likely to have malignancy than the group without DNR orders. Mortality at days 7, 14 and 28, as well as intensive care and hospital mortality, were all worse in these patients even after propensity-score matching. There were higher Charlson Comorbidity Index in the emergency room, but better outcomes in those with early-DNR orders compared with late-DNR orders.
Conclusion: DNR orders may predict worse outcomes for patients with sepsis admitted to medical ICUs. The survival rate in the early-DNR order group was not inferior to the late-DNR order group.
Background: Critical care consensus groups recommend providing bereavement support; however, little is known about what cardiac intensive care patients' families would find useful and beneficial in their grieving process.
Aim and objectives: To describe cardiac intensive care unit (ICU) patients' families' opinions on six common components of a bereavement programme.
Design: Qualitative, exploratory and descriptive.
Methods: Families were recruited from a cardiac ICU 13-15 months after their loved one's death. Families were interviewed using a semi-structured questionnaire. The research team analysed interview transcripts to assess and categorize families' opinions on six bereavement components.
RESULTS: Twelve family members were interviewed. Most were female (n = 8, 67%), spouses (n = 10, 83%) and white (n = 10, 83%), with a mean age (SD) of 58.4 years (16.7). Families' overall opinions of the bereavement brochure were positive, stating it was helpful in providing information about the grieving process. Families described the sympathy card as "meaningful" and "touching," although they rated it neutral in providing comfort. Most participants felt that a follow-up telephone call was unnecessary except to answer lingering questions they had. Many participants favoured the unit offering counselling services because they found therapy helpful in their grieving process. Participants had mixed feelings about a memory box; they believed it was an individual preference and should be handled in a sensitive manner. Most would not have attended a memorial service if offered because of traffic, distance, concerns about stressful feelings on returning to the hospital or because they already honoured their loved ones through a personalized memorial service.
Conclusions: Participants varied in their opinions about what bereavement services may be useful; however, this study provides insight about services that cardiac critical care units may consider when adding bereavement support.
Relevance to clinical practice: Family perspectives about bereavement needs can help structure services offered by critical care units.
Objectives: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents' recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care.
Design: Thematic analysis of incidental data from a larger grounded theory study.
Setting: Four Australian PICUs.
Subjects: Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015-2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis.
Measurements and main results: Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents' recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, demedicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery.
Conclusions: Findings from this study offer many concrete recommendations for improvements in care both during and after a child's death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs.
Experiencing the end of life of a family member in the intensive care unit is clearly difficult. An important role of critical care nurses is to help family members through this challenging period. This article highlights a few clinically significant barriers and facilitators related to improving family experiences at the patient's end of life that have received less attention in the literature thus far. Facilitators include specific aspects of communication, the nurse's role as the coordinator of care, bereavement care, promoting a "good death," and caring for health care providers. Barriers include medical uncertainty and differences in values and culture.
BACKGROUND: The death of a child is regarded as one of the most devastating events for a family. Families are reliant on nurses to not only provide end-of-life care but also to support and care for grieving families in a way that is sensitive to their cultural and religious needs and preferences.
AIMS: The aim of this study was to explore the perceived impact and influence of cultural diversity on how neonatal and paediatric intensive care nurses care for Muslim families before and after the death of infants/children.
DESIGN: A qualitative descriptive approach was used in this study, conducted in Saudi Arabia.
METHODS: Semi-structured interviews were used to gather data from a convenience sample of registered nurses working in neonatal and paediatric intensive care, with experience in providing end-of-life care. Interviews were conducted between July and November, 2018. Interviews were audio-recorded and transcribed for analysis.
RESULTS: Thirteen registered nurses participated; all were born overseas, identified with various faiths and spoke English in the workplace. A respect for diversity and care of the family was prioritized yet impacted by communication challenges. Caring and respect was demonstrated by facilitating important cultural and religious practices important in the Muslim faith. Self-care was identified as important, transcending the culturally diverse nature of the nursing workforce.
CONCLUSIONS: Significant challenges exist for a culturally diverse nursing workforce in providing care to a Saudi Muslim population of infants/children and families, before and after a death. Their overriding commitment to respect for others, and an openness to cultural diversity and difference, aided in overcoming the inherent challenges in providing culturally sensitive end-of-life care that meets the needs of Muslim families. These findings provide valuable insights for intensive care clinicians in other countries to address challenges associated with cultural diversity.
BACKGROUND: End-of-life (EOL) decisions are a serious ethical dilemma and are frequently carried out in intensive care units (ICUs). The aim of this systematic review was to investigated the different approaches used in ICUs and reported in randomized controlled trials (RCTs) to address EOL decisions and compare the impact of these different strategies regarding potential bias and mortality estimates.
METHODS: We identified relevant RCTs published in the past 15 years via PubMed, EMBASE, and CINAHL. In addition, we searched The Cochrane Library and checked registries, including ClinicalTrials.gov to assess concordance between declared and published outcomes. Among the journals we screened were the 3 ICU specialty journals and the four general medicine journals with the highest impact factor. Only RCTs were selected in which in-ICU mortality was the primary or secondary outcome. The primary outcome was information regarding EOL decisions, and the secondary outcome was how EOL decisions were treated in the study analysis.
RESULTS: A total of 178 relevant trials were identified. The details regarding the methodological aspects resulting from EOL decisions were reported in only 62 articles (35%). The manner in which EOL decisions were considered in the study analysis was very heterogeneous, often leading to a high risk of bias.
CONCLUSION: There is a heterogeneity regarding the management of data on EOL decisions in randomized control trials with mortality endpoints. Recommendations or rules are required regarding the inclusion of patients with potential EOL decisions in RCT analyses and how to manage such decisions from a methodological point of view.
TRIAL REGISTRATION: PROSPERO website (CRD42013005724).
BACKGROUND: Advanced cancer patients' end-of-life care preferences in oncology units, medical-surgical units, nursing homes and palliative care services have been established. However, less is known about end-of-life care preferences of patients with advanced cancer in intensive care units and their families.
AIM: To explore end-of-life care preferences of patients with advanced cancer and their families in intensive care units and if these align with essential elements for end-of-life care.
DESIGN: Electronic databases were searched up to February 2018. Reference lists of retrieved articles were screened for potential studies.
RESULTS: A total of 112 full text articles were retrieved. Of these, 12 articles reporting outcomes from 10 studies were eligible for inclusion. The majority were retrospective chart reviews (n = 7) and conducted in developed countries (n = 9). Care preferences change over time with deteriorating physical condition. Ongoing patient-centred communication and shared decision-making are critical as is teamwork and involvement of a palliative care team. Marital status, gender and ethnicity appear to influence care preferences. Of those studies examining patient preferences and/or the receiving of their preferences, these could be aligned with approximately half of the Australian essential elements for end-of-life care.
CONCLUSIONS: Providing end-of-life care for patients with advanced cancer in intensive care units is challenging. No studies have investigated prospectively the end-of-life care preferences of patients and their families in this acute setting. Further research is required to determine the elements of care preferences for patients with advanced cancer and their families in intensive care units in developing countries.
OBJECTIVE: To describe children's anxiety, depression, behaviors, and school performance at 2-13 months after sibling neonatal/pediatric intensive care unit (NICU/PICU) or emergency department (ED) death and compare these outcomes by child age, sex, race/ethnicity, whether the child saw their sibling in the NICU/PICU/ED, and attended the sibling's funeral.
STUDY DESIGN: Children in 71 families were recruited for this longitudinal study from 4 children's hospitals and 14 other Florida hospitals. Children rated anxiety (Spence Children's Anxiety Scale) and depression (Children's Depression Inventory); parents rated child behaviors (Child Behavior Checklist) and reported school performance (detentions, suspensions, requested parent-teacher meetings) at 2, 4, 6, and 13 months post-sibling death. Analyses included repeated measures-ANOVA, t-tests, and 1-way ANOVA.
RESULTS: In total, 132 children and 96 parents participated. More children were female (58%), black (50%), and school-age (72%). Of the children, 43% had elevated anxiety and 6% had elevated depression over 13 months post-sibling death. Child-rated anxiety was higher for girls and black vs white children. Child-rated anxiety and depression were lower if they saw their sibling in the NICU/PICU/ED before and/or after the death, and/or attended the funeral. Teens were more withdrawn than school-age children at all time points. Children who did not see their deceased sibling in the NICU/PICU/ED after death had more requests for parent-teacher conferences.
CONCLUSIONS: Children's anxiety was more common than depression, especially in girls and black children. Children who saw their siblings in the NICU/PICU/ED before/after death and/or attended funeral services had lower anxiety and depression over the first 13 months after sibling death.
OBJECTIVES: To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).
DESIGN: An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.
SETTING: A PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK.
PARTICIPANTS: 17 parents of 11 children who had died in the PICU.
RESULTS: Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a 'place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU.
CONCLUSIONS AND IMPLICATIONS: The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.
BACKGROUND: High rates of health care utilization at the end of life may be a marker of care that does not align with patient-stated preferences. We sought to describe trends in end-of-life care and factors associated with dying in hospital.
METHODS: We conducted a population-level retrospective cohort study of adult decedents in Ontario between Apr. 1, 2004, and Mar. 31, 2015, using linked administrative data sets, including the Office of the Registrar General for Deaths database, the hospital Discharge Abstract Database, the National Ambulatory Care Reporting System and physicians' billing claims (Ontario Health Insurance Plan). The primary outcome was place of death. To determine health care utilization and health care costs during the 6 months before death, we also identified admissions to hospital and to the intensive care unit, emergency department visits, and receipt of mechanical ventilation and palliative care.
RESULTS: In the last 6 months of life, 77.3% of 962 462 decedents presented to an emergency department, 68.4% were admitted to hospital, 19.4% were admitted to an intensive care unit, and 13.9% received mechanical ventilation. Forty-five percent of all deaths occurred in hospital, a proportion that declined marginally over time, whereas receipt of palliative care increased during terminal hospital admissions (from 14.0% in fiscal year 2004/05 to 29.3% in 2014/15, p < 0.001) and in the last 6 months of life (from 28.1% in 2004/05 to 57.7% in 2014/15, p < 0.001). The proportion of decedents who presented to the emergency department, were admitted to hospital or were admitted to the intensive care unit in the last 6 months of life did not change over 11 years. The mean total health care costs in the last 6 months of life were highest among those dying in hospital, with most costs attributable to inpatient medical care.
INTERPRETATION: Health care utilization in the last 6 months of life was substantial and did not decrease over time. It is possible that increased capacity for palliative, hospice and home care at the end of life may help to better align health system resources with the preferences of most patients, a topic that should be explored in future studies.
Objective: To determine perceptions of Jordanian critical care staff about obstacles and facilitators to end-of-life care.
Research methodology: The “National Survey of Critical Care Nurses’ Perceptions of End-of-Life Care” was adapted and distributed to 143 critical care nurses (n = 110) and physicians (n = 33) in two Jordanian hospitals. Nurses and physicians completed items about perceived obstacles to end-of-life care. Nurses only completed items about facilitators to end-of-life care.
Results: The overall response rate was 72.7% (n = 104/143). Seventy–six nurses (69.1%) and 28 physicians (84.5%) responded. Nurses and physicians agreed that the highest scoring obstacles were: ‘family members who do not understand what life-saving measures mean’ and the ‘poor design of critical care units’. Other highly scoring obstacles related to clinicians’ behaviours, characteristics and attitudes. Nurses perceived the highest scoring facilitator was ‘family members who accepted that the patient was dying’.
Conclusion: There is a need to further explore the issues underlying perceptions about clinicians’ behaviours, which were perceived to be key barriers to quality end-of-life care and to find acceptable solutions that fit with Islamic culture. It is the first time that the survey has been used to gather perceptions of doctors and nurses in a non-western culture.
PURPOSE: It is imperative to provide quality end-of-life (EOL) care for patients with cancer. Although rates of hospice use within the Veterans Health Administration have improved, antineoplastic administration and intensive care unit (ICU) admission at the EOL, indicators of aggressive care, have not clearly declined over recent years.
METHODS: We identified 32,665 veterans diagnosed with stage IV lung, colorectal, or pancreatic cancer who died between 2009 and 2016 using a novel EOL Dashboard Tool created from Veterans Administration Cancer Registry data. This EOL tool reports the incidence of antineoplastic drug use in the last 14 days of life, ICU admission in the last 30 days of life, and hospice admission or consult. Change from 2009 to 2016 was assessed using a repeated measures one-way analysis of variance with post hoc test for linear trend of time for individual cancers and two-way analysis of variance for all cancers combined.
RESULTS: Antineoplastic use in the last 14 days of life declined from 6.8% in 2009 to 4.4% in 2016 (P = .03). ICU admission in the last 30 days did not change significantly, from 13.3% in 2009 to 14.7% in 2016. The exception was patients with stage IV lung cancer, in whom ICU admissions increased from 12.9% to 16.2% (P = .01). Patients using hospice services increased from 32.4% to 52.6% (P < .01).
CONCLUSION: Although antineoplastic administration at the EOL is declining for veterans with stage IV cancer, ICU admissions are unchanged and becoming more common in stage IV lung cancer despite increasing hospice use.
The majority of pediatric deaths occur in intensive care units, and among children who survive their pediatric intensive care unit (PICU) stay, many are left with significant morbidities, profound disability, and/or technology dependence. Additionally, more than 50% of children admitted to the PICU have baseline chronic medical conditions, and these patients are at increased risk of mortality, prolonged ICU length of stay, and aggressive interventions that clinicians may assumed to be desired by families because they utilized them in the past. Oftentimes, these outcomes are the consequence of a cascade of interventions that, over time, have diminishing potential to improve patient survival.
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This study was to determine the attitude of nurses regarding the concept of a good death and terminal phase was conducted to determine the effect on patient care. This is a descriptive and analytical study. The study was conducted with 102 nurses who worked at an intensive care unit and were willing to participate to the study. The mean Good Death Scale total score was 56.75 ± 8.90 and the Frommelt Scale score was 95.10 ± 8.53. In conclusion, our study results suggest that the attitudes of the nurses during care to moribund patients are moderate and, when appropriate care is given, they perceive the death as a positive experience.
The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients. In December 2003, in the northeast region of Italy, the regional authority promoted and developed a regional network for PPC, a regional network dedicated to the management of pediatric patients with life-limiting and life-threatening diseases. Characterization of LTV children population and description of care offered to them by a regional PPC network, based on the experience of the Veneto region were collected in a regional database. The regional database and evaluation of families' satisfaction, by means of a questionnaire, were longitudinally analyzed. We studied 56 children on LTV. The main involved diseases were neuromuscular diseases and myopathy. All patients had major comorbidities. Mean age was 4.5 years. The median age of starting ventilation was 3.9 years. The initial type of ventilation was invasive mechanical ventilation in 31 patients and noninvasive ventilation in 25 of them. The overall average frequency of hospitalizations for acute episodes was 0.7 admissions per year and the median duration of staying was 6 days. The median duration of staying in the intensive care unit (ICU) was significantly reduced after the opening of a residential solution (the pediatric hospice) (5 vs. 39 days). PPC network can offer global care to children on LTV. The availability of a residential structure into the PPC network seems to reduce the number and duration of hospital stays, especially in ICU, of this population, with likely cost savings. Further studies are necessary to confirm this hypothesis.
BACKGROUND: New population health community-based models of palliative care can result in more compassionate, affordable, and sustainable high-quality care.
OBJECTIVES: We evaluated utilization and cost outcomes of a standardized, population health community-based palliative care program provided by nurses and social workers.
DESIGN: We conducted a retrospective propensity-adjusted study to quantify cost savings and resource utilization associated with a community-based palliative care program. We analyzed claims data from a Medicare Advantage (MA) plan and used a proprietary predictive model to identify 804 members at high risk for overmedicalized end-of-life care. We enrolled 204 members in the palliative care program and compared them with 600 who received standard, telephonic, health plan case management. We excluded members with fewer than two months of enrolled experience or those with insufficient data for analysis, leaving 176 members in the study group and 570 in the control group for evaluation. We compared differences in utilization and costs (medical and pharmacy), hospital admissions, bed days (acute and intensive care unit [ICU]), and emergency department visits.
SETTING/SUBJECTS: A 30,000-member MA plan and a health system in Central Ohio between October 2015 and June 2016.
RESULTS: Members who received community-based palliative care showed a statistically significant 20% reduction in total medical costs ($619 per enrolled member per month), 38% reduction in ICU admissions, 33% reduction in hospital admissions, and 12% reduction in hospital days.
CONCLUSION: A structured nurse and social work model of community-based palliative care using a predictive model to identify MA candidates for intervention can reduce utilization and medical costs.