Context: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering.
Objectives: To examine bereaved parents' perceptions of infant suffering in the NICU.
Methods: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death.
Results: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making.
Conclusion: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
Twenty percent of Americans die in an intensive care unit (ICU), often incapacitated or requiring assisted decision making. Surrogates are often required to make urgent, complex, high-stakes decisions. Communication among patients, families, and clinicians is often delayed and inefficient with frequent missed opportunities to support the emotional and psychological needs of surrogates, particularly at the end of life. The Critical Care Nurse Communicator program is a nurse-led, primary palliative care intervention designed to improve the quality and consistency of communication in the ICU and address the informational, psychological, and emotional needs of surrogate decision-makers through the shared decision-making process.
AIM: To synthesise qualitative studies of patients' families' experiences and perceptions of end-of-life care in the intensive care unit when life-sustaining treatments are withdrawn.
DESIGN: Qualitative meta-synthesis
DATA SOURCES: Comprehensive search of 18 electronic databases for qualitative studies published between January 2005 - February 2019.
REVIEW METHOD: Meta-aggregation.
RESULTS: Thirteen studies met the inclusion criteria. A conceptual 'Model of Preparedness' was developed reflecting the elements of end-of-life care most valued by families: 'End-of-life communication'; 'Valued attributes of patient care'; 'Preparing the family'; 'Supporting the family' and; 'Bereavement care'.
CONCLUSION: A family-centred approach to end-of-life care that acknowledges the values and preferences of families in the intensive care unit is important. These families have unmet needs related to communication, support and bereavement care. Effective communication and support are central to preparedness and if these care components are in place, families can be better equipped to manage the death, their sadness, loss and grief. The findings suggest that health professionals may benefit from specialist end-of-life care education, to support families and guide the establishment of preparedness.
IMPACT: Understanding the role and characteristics of preparedness during end-of-life care will inform future practice in the intensive care unit and may improve family member satisfaction with care and recovery from loss. Nurses are optimally positioned to address the perceived shortfalls in end-of-life care. These findings have implications for health education, policies and standards for end-of-life care in the intensive care unit.
BACKGROUND: There is a gap in knowledge about the kind and quality of care experienced by hospital patients at the end of their lives.
AIMS: To document and compare the patterns in end-of-life care for patients dying across a range of different medical units in an acute care hospital.
METHODS: A retrospective observational study of consecutive adult inpatient deaths between 1 July 2010 and 30 June 2014 in four different medical units of an Australian tertiary referral hospital was performed. Units were selected on the basis of highest inpatient death rates and included medical oncology, respiratory medicine, cardiology and gastroenterology/hepatology.
RESULTS: Overall, 41% of patients died with active medical treatment plans, but significantly more respiratory and cardiology patients died with ongoing treatment (46 and 75% respectively) than medical oncology and gastroenterology patients (each 27%, P < 0.05). More medical oncology and gastroenterology patients were recognised as dying (92 and 88%) compared with 72% of respiratory and only 38% of cardiology patients (P < 0.001). Significantly, more medical oncology patients were referred to palliative care and received comfort care plans than all other patient groups. However, the rate of non-palliative interventions given in the final 48 h was not significantly different between all four groups.
CONCLUSIONS: There were differences in managing the dying process between all disciplines. A possible solution to these discrepancies would be to create an integrated palliative care approach across the hospital. Improving and reducing interdisciplinary practice variations will allow more patients to have a high-quality and safe death in acute hospitals.
Objectives: Facilitating a high quality of death is an important aspect of comfort care for patients in ICUs. The quality of death in ICUs has been rarely reported in Asian countries. Although Korea is currently in the early stage after the implementation of the “well-dying” law, this seems to have a considerable effect on practice. In this study, we aimed to understand the status of quality of death in Korean ICUs as perceived by medical staff, and to elucidate factors affecting patient quality of death.
Design: A multicenter cross-sectional survey study.
Setting: Medical ICUs of two tertiary-care teaching hospitals and two secondary-care hospitals.
Patients: Deceased patients from June 2016 to May 2017.
Interventions: Relevant medical staff were asked to complete a translated Quality of Dying and Death questionnaire within 48 hours after a patient’s death. A higher Quality of Dying and Death score (ranged from 0 to 100) corresponded to a better quality of death.
Measurements and Main Results: A total of 416 completed questionnaires were obtained from 177 medical staff (66 doctors and 111 nurses) of 255 patients. All 20 items of the Quality of Dying and Death received low scores. Quality of death perceived by nurses was better than that perceived by doctors (33.1 ± 18.4 vs 29.7 ± 15.3; p = 0.042). Performing cardiopulmonary resuscitation and using inotropes within 24 hours before death were associated with poorer quality of death, whereas using analgesics was associated with better quality of death.
Conclusions: The quality of death of patients in Korean ICUs was considerably poorer than reported in other countries. Provision of appropriate comfort care, avoidance of unnecessary life-sustaining care, and permission for more frequent visits from patients’ families may correspond to better quality of death in Korean medical ICUs. It is also expected that the new legislation would positively affect the quality of death in Korean ICUs.
BACKGROUND: Family conferences (FCs) in the intensive care unit play an important role in reducing the psychological burden of patients' families at the end of life. However, no studies have clarified the specific roles and contributions of nurses related to FCs for terminally ill patients in critical care and their families.
AIMS AND OBJECTIVES: To clarify nurses' contribution to FCs for terminally ill patients in critical care and their families and examine the priority of each item.
DESIGN: A modified Delphi method was used.
METHODS: This study consisted of two phases. In phase 1, an initial list was developed based on a literature review, individual interviews, and a focus group interview. Phase 2 involved two rounds of the Delphi survey. Practitioners (N = 55) from hospitals across Japan were recruited to the Expert Panel for phase 2. They were asked to rate each nurse's contribution in terms of its importance using a 9-point Likert scale (1 being "not important at all" to 9 being "very important"). Fifty participants responded to round 1 of the survey, and 46 participants completed round 2. If at least 80% of the panellists chose an importance level of 7 or higher, the item was considered "important".
RESULTS: The 65 items of the potential list were classified into three domains: preparation (16 items), discussion and facilitating meaning during a FC (32 items), and follow up after a FC (17 items). The expert panel determined that, of 65 items, 49 items on the proposed list of nurses' contribution were considered important.
CONCLUSIONS: This study clarified nurses' contribution to FCs, with consensus on their importance by expert nurses.
RELEVANCE TO CLINICAL PRACTICE: This study could be useful for improving and ensuring the quality of nurses' contribution to FCs and promoting collaboration between nurses and other medical professionals.
Patients with frailty experience substantial physical and emotional distress related to their condition and face increased morbidity and mortality compared with their nonfrail peers. Palliative care is an interdisciplinary medical specialty focused on improving quality of life for patients with serious illness, including those with frailty, throughout their disease course. Anesthesiology providers will frequently encounter frail patients in the perioperative period and in the intensive care unit (ICU) and can contribute to improving the quality of life for these patients through the provision of palliative care. We highlight the opportunities to incorporate primary palliative care, including basic symptom management and straightforward goals-of-care discussions, provided by the primary clinicians, and when necessary, timely consultation by a specialty palliative care team to assist with complex symptom management and goals-of-care discussions in the face of team and/or family conflict. In this review, we apply the principles of palliative care to patients with frailty and synthesize the evidence regarding methods to integrate palliative care into the perioperative and ICU settings.
BACKGROUND: This quantitative study aimed to analyse the relationship between knowledge and nurses' self-confidence (or self-efficacy) in applying palliative care (PC) in the intensive care unit (ICU). This study was a correlational study with a cross-sectional approach. The sampling technique used was total sampling, and the sample included all nurses who were actively working at the general hospital in Bandung, West Java, Indonesia, during the study. There were 127 people in total. Data were collected using questionnaires. The Pearson correlation test was used for bivariate analysis. The results of univariate analysis showed that the majority of respondents had high self-confidence but had less knowledge related to PC in the ICU. Based on the results of the bivariate analysis, there was a significant relationship between knowledge and self-confidence variables. The results showed that a high number of respondents had less knowledge in implementing PC in the ICU. Therefore, familiarisation sessions and training related to this are needed, focusing on nurses' beliefs in their abilities.
PURPOSE OF REVIEW: Children with medical or surgical critical illness or injury require skillful attention to physical, emotional, psychological, and spiritual needs, whereas their families need support and guidance in facing life-threatening or life-changing events and gut-wrenching decisions. This article reviews current evidence and best practices for integrating palliative care into the pediatric intensive care unit (PICU), with a focus on surgical patients.
RECENT FINDINGS: Palliative care is best integrated in a tiered approach, with primary palliative care provided by the PICU and surgical providers for all patients and families, including basic symptom management, high-quality communication, and end-of-life care. Secondary and tertiary levels of care involve unit or team-based 'champions' with additional expertise, and subspecialty palliative care teams, respectively. PICU and surgical providers should be able to provide primary palliative care, to identify patients and families for whom a palliative care consult would be helpful, and should be comfortable introducing the concept of palliative care to families.
SUMMARY: This review provides a framework and tools to enable PICU and surgical providers to integrate palliative care best practices into patient and family care.
Purpose: Scarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting.
Materials and methods: A prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire.
Results: 8 (25%) physicians and 24 (75%) nurses participated in the study by providing their ‘treatment decisions’ for 14 patients at several time points. EOLD was ‘made’ 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment.
Conclusions: Our findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals.
BACKGROUND: Identifying critically ill patients who have unmet needs for palliative care is the first step in integrating the palliative approach for patients and their families into intensive care units.
OBJECTIVE: To explore how palliative care is addressed in an intensive care unit and to develop and test a screening tool for unmet needs that may be met through the palliative approach.
METHODS: A mixed-methods study was conducted in the intensive care unit of a tertiary care hospital to explore the palliative approach. Focus groups and a survey were used to identify items for the screening tool. After pilot testing of the tool, interviews were conducted to refine the content.
RESULTS: The first focus group (14 participants) revealed participants' frustration with unclear communication and a desire for better collaboration among health care team members regarding patients with serious life-limiting illnesses and their families. The survey (response rate: 20%; 30 of 150) showed clinicians' preference for items that identify specific needs rather than diagnoses. The second focus group (8 participants) yielded strategies to operationalize the tool for all patients in the intensive care unit. After 2 separate pilot testing cycles, bedside nurses noted that use of the screening tool prompted earlier discussions and broader assessments of what is meaningful to patients and their families.
CONCLUSION: Development of a screening tool for unmet palliative care needs among intensive care unit patients is feasible and acceptable and may help to systematically integrate the palliative approach into routine care for critically ill patients.
The transfer of critically ill children from intensive care units (ICUs) to their homes for palliation is seldom described. We report our 10-year pediatric palliative transport experience and conducted a survey to gain parents' perspectives of their child's transport experience. Over the study period, eight patients were transported from our pediatric ICU to their homes or hospice facilities. There were no intratransport adverse events. Parents who participated in the survey responded positively to the transport experience. The availability of a dedicated critical care transport service allowed for palliative transfers to be performed safely. Facilitating transport to allow withdrawal of life support at home is an acceptable option to families as part of holistic end-of-life care.
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses.
DESIGN: Prospective multicenter observational study.
SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediátrica-2 (MOMUCI-2) study in Spain.
PATIENTS: Children 1 to 16 years old who died in PICU during 2017 and 2018.
MEASUREMENTS AND MAIN RESULTS: During the 2-year study period, 250 deaths were recorded. Seventy-three children (29.3%) were younger than 1 year, 131 (52.6%) were between 1 and 12 years old, and 45 (18.1%) were older than 12. One-hundred eighty patients (72%) suffered from an underlying chronic disease, 54 (21.6%) had been admitted to PICU in the past 6 months, and 71 (28.4%) were severely disabled upon admission. Deaths occurred more frequently on the afternoon-night shift (62%) after a median PICU length of stay of 3 days (1-12 d). Nearly half of the patients died (48.8%) after life-sustaining treatment limitation, 71 died (28.4%) despite receiving life-sustaining therapies and cardiopulmonary resuscitation, and 57 (22.8%) were declared brain dead. The most frequent type of life-sustaining treatment limitation was the withdrawal of mechanical ventilation (20.8%), followed by noninitiation of cardiopulmonary resuscitation (18%) and withdrawal of vasoactive drugs (13.7%). Life-sustaining treatment limitation was significantly more frequent in patients with an underlying neurologic-neuromuscular disease, respiratory disease as the cause of admission, a previous admission to PICU in the past 6 months, and severe disability. Multivariate analyses indicated that life-sustaining treatment limitation, chronicity, and poor Pediatric Cerebral Performance Category score were closely related.
CONCLUSIONS: Currently, nearly half of the deaths in Spanish PICUs occur after the withdrawal of life-sustaining treatments. These children are more likely to have had previous admissions to the PICU, be severely disabled or to suffer from chronic diseases. Healthcare professionals who treat critically ill children ought to be aware of this situation and should therefore be prepared and trained to provide the best end-of-life care possible.
In view of the exceptional public health situation caused by the COVID-19 pandemic, a consensus work has been promoted from the ethics group of the Spanish Society of Intensive, Critical Medicine and Coronary Units (SEMICYUC), with the objective of finding some answers from ethics to the crossroads between the increase of people with intensive care needs and the effective availability of means. In a very short period, the medical practice framework has been changed to a 'catastrophe medicine' scenario, with the consequent change in the decision-making parameters. In this context, the allocation of resources or the prioritization of treatment become crucial elements, and it is important to have an ethical reference framework to be able to make the necessary clinical decisions. For this, a process of narrative review of the evidence has been carried out, followed by a unsystematic consensus of experts, which has resulted in both the publication of a position paper and recommendations from SEMICYUC itself, and the consensus between 18 scientific societies and 5 institutes/chairs of bioethics and palliative care of a framework document of reference for general ethical recommendations in this context of crisis.
The coronavirus disease 2019 (COVID-19) pandemic has spread throughout the world, leading hospitals to expand their critical-care capacity. Logistics in times of surging demand are challenging. Health-care providers are overwhelmed by the relentless workload and tend to focus on the patients, as they have little time for family-centred care.
In many places, a nearly complete lockdown combined with stringent social distancing measures have been put in place in an attempt to curb the spread of the COVID-19 pandemic. Hospital visits are prohibited to ensure that relatives do not contaminate other family members, patients, or health-care professionals. However, the burden on intensive care unit (ICU) relatives of patients with COVID-19 is particularly heavy. The lockdown imposed by many governments can result in confusion, stress, frustration, anger, communication gaps, and post-traumatic stress-related symptoms.
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Since the beginning of the SARS-CoV-2 (also called COVID-19) outbreak in the Hubei province in China, half a million people have been infected and more than 25,000 died worldwide by the end of March 2020. In Europe, the third most infected country is France (after Italy and Spain) with more than 26,000 cases and about 1500 deaths by the end of the last week of March. One of the first French regions hit by the outbreak was Picardy, located at the northeast of the country. The first case in Picardy was diagnosed on February 26th, 2020 in the Cardiac Thoracic and Respiratory ICU of the Amiens-Picardy University Hospital. The number of patients admitted to the region's ICUs rapidly increased after that first case. To tackle this surge, an organisation was set in order to coordinate and facilitate the admission of critically ill COVID-19 infected patients, and to avoid or at least delay the overrun of ICU capacities in the region. The organisation has been based on a centralised on-call dispatch ICU consultant and efficient bed manager software.
In current debates about allocation of scarce ICU resources, we suggest there is undue optimism about the ‘good’ of intensive care unit (ICU) access. Most critical COVID-19 patients who receive access to a ventilator will still die. The minority who survive will likely leave with significant morbidity and a long and uncertain road to recovery. This reality is obscured in the current bioethics literature on ICU triage in which scarcity and value are conflated.
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Introduction: Although shortcomings in clinician–family communication and decision making for incapacitated, critically ill patients are common, there are few rigorously tested interventions to improve outcomes. In this manuscript, we present our methodology for the Pairing Re-engineered Intensive Care Unit Teams with Nurse-Driven Emotional support and Relationship Building (PARTNER 2) trial, and discuss design challenges and their resolution.
Methods and analysis: This is a pragmatic, stepped-wedge, cluster randomised controlled trial comparing the PARTNER 2 intervention to usual care among 690 incapacitated, critically ill patients and their surrogates in five ICUs in Pennsylvania. Eligible subjects will include critically ill patients at high risk of death and/or severe long-term functional impairment, their main surrogate decision-maker and their clinicians. The PARTNER intervention is delivered by the interprofessional ICU team and overseen by 4–6 nurses from each ICU. It involves: (1) advanced communication skills training for nurses to deliver support to surrogates throughout the ICU stay; (2) deploying a structured family support pathway; (3) enacting strategies to foster collaboration between ICU and palliative care services and (4) providing intensive implementation support to each ICU to incorporate the family support pathway into clinicians’ workflow. The primary outcome is surrogates’ ratings of the quality of communication during the ICU stay as assessed by telephone at 6-month follow-up. Prespecified secondary outcomes include surrogates’ scores on the Hospital Anxiety and Depression Scale, the Impact of Event Scale, the modified Patient Perception of Patient Centredness scale, the Decision Regret Scale, nurses’ scores on the Maslach Burnout Inventory, and length of stay during and costs of the index hospitalisation.
We also discuss key methodological challenges, including determining the optimal level of randomisation, using existing staff to deploy the intervention and maximising long-term follow-up of participants.
Ethics and dissemination: We obtained ethics approval through the University of Pittsburgh, Human Research Protection Office. The findings will be published in peer-reviewed journals.
Background: Community transmission of coronavirus 2019 (Covid-19) was detected in the state of Washington in February 2020.
Methods: We identified patients from nine Seattle-area hospitals who were admitted to the intensive care unit (ICU) with confirmed infection with severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2). Clinical data were obtained through review of medical records. The data reported here are those available through March 23, 2020. Each patient had at least 14 days of follow-up.
Results: We identified 24 patients with confirmed Covid-19. The mean (±SD) age of the patients was 64±18 years, 63% were men, and symptoms began 7±4 days before admission. The most common symptoms were cough and shortness of breath; 50% of patients had fever on admission, and 58% had diabetes mellitus. All the patients were admitted for hypoxemic respiratory failure; 75% (18 patients) needed mechanical ventilation. Most of the patients (17) also had hypotension and needed vasopressors. No patient tested positive for influenza A, influenza B, or other respiratory viruses. Half the patients (12) died between ICU day 1 and day 18, including 4 patients who had a do-not-resuscitate order on admission. Of the 12 surviving patients, 5 were discharged home, 4 were discharged from the ICU but remained in the hospital, and 3 continued to receive mechanical ventilation in the ICU.
Conclusions: During the first 3 weeks of the Covid-19 outbreak in the Seattle area, the most common reasons for admission to the ICU were hypoxemic respiratory failure leading to mechanical ventilation, hypotension requiring vasopressor treatment, or both. Mortality among these critically ill patients was high. (Funded by the National Institutes of Health.)
Purpose: Intensive care unit health care professionals must be skilled in providing end-of-life care. Crucial in this kind of care is end-of-life decision-making, which is a complex process involving a variety of stakeholders and requiring adequate justification. The aim of this systematic review is to analyse papers tackling ethical issues in relation to end-of-life decision-making in intensive care units. It explores the ethical positions, arguments and principles.
Methods: A literature search was conducted in bibliographic databases and grey literature sources for the time period from 1990 to 2019. The constant comparative method was used for qualitative analysis of included papers in order to identify ethical content including ethical positions, ethical arguments, and ethical principles used in decision-making process.
Results: In the 15 included papers we have identified a total of 43 ethical positions. Ten positions were identified as substantive, 33 as procedural. Twelve different ethical principles emerged from the ethical arguments. The most frequently used principles are the principles of beneficence, autonomy and nonmaleficence.
Conclusions: We have demonstrated that recommendations and guidelines designed specifically by intensive or critical care experts for intensive care units promote similar ethical positions, with minimal dissenting positions.