Purpose: To investigate the prevalence of advance directives, healthcare proxies, and legal representatives in Austrian intensive care units (ICUs), and to explore barriers faced by adults engaged in the contemplation and documentation phase of the advance care planning process.
Methods: Two studies were conducted: (1) A 4-week multicenter study covering seven Austrian ICUs. A retrospective chart review of 475 patients who presented to the ICUs between 1 January 2019 and 31 January 2019 was conducted. (2) An interview and focus group study with 12 semi-structured expert interviews and three focus groups with 21 adults was performed to gain insights into potential barriers faced by Austrian adults planning medical decisions in advance.
Results: Of the 475 ICU patients, 3 (0.6%) had an advance directive, 4 (0.8%) had a healthcare proxy, and 7 (1.5%) had a legal guardian. Despite the low prevalence rates, patients and relatives reacted positively to the question of whether they had an advance directive. Patients older than 55 years and patients with children reacted significantly more positively than younger patients and patients without children. The interviews and focus groups revealed important barriers that prevent adults in Austria from considering planning in advance for potentially critical health states.
Conclusion: The studies show low prevalence rates of healthcare documents in Austrian ICUs. However, when patients were asked about an advance directive, reactions indicated positive attitudes. The gap between positive attitudes and actual document completion can be explained by multiple barriers that exist for adults in Austria when it comes to planning for potential future incapacity.
The aim of the research was to conduct the Turkish validity and reliability study of the Frommelt Attitude toward Care of the Dying Scale. The study used a cross-sectional research design. The sample of the study consists of 236 intensive care nurses. The data were analyzed using SPSS 22.0 and SPSS AMOS 22.0 programs. Descriptive statistical methods, reliability analysis, exploratory and confirmatory factor analyses were used in the analysis of the data. According to the findings of the exploratory factor analysis, the scale was divided into six factors as in its original. According to results of the confirmatory factor analysis showed that the goodness of fit of the scale was acceptable level. Cronbach’s alpha coefficients of the Frommelt Attitude toward Care of the Dying and subdimensions were found to be between 0.606 and 0.800. These results showed that the Turkish form of scale was valid and reliable and it had the necessary conditions for using Turkish form.
Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit.
Methods: A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records.
Results: One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn.
Conclusions: The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care.
Background: Access to specialty palliative care delivery in the intensive care unit is inconsistent across institutions. The intensive care unit at the study institution uses a screening tool to identify patients likely to benefit from specialty palliative care, yet little is known about outcomes associated with the use of screening tools.
Objective: To identify outcomes associated with specialty palliative care referral among patients with critical illness.
Methods: Records of 112 patients with positive results on palliative care screening were retrospectively reviewed to compare outcomes between patients who received a specialty palliative care consult and those who did not. Primary outcome measures were length of stay, discharge disposition, and escalation of care.
Results: Sixty-five patients (58%) did not receive a palliative care consult. No significant differences were found in length of hospital or intensive care unit stay. Most patients who experienced mechanical ventilation did not receive a palliative care consultation ( 2 = 5.14, P = .02). Patients who were discharged to home were also less likely to receive a consult ( 2 = 4.1, P = .04), whereas patients who were discharged to hospice were more likely to receive a consult ( 2 = 19.39, P < .001).
Conclusions: Unmet needs exist for specialty palliative care. Understanding the methods of identifying patients for specialty palliative care and providing them with such care is critically important. Future research is needed to elucidate the factors providers use in their decisions to order or defer specialty palliative care consultation.
Topic: A substantial number of patients die in the intensive care unit, so high-quality end-of-life care is an important part of intensive care unit work. However, end-of-life care varies because of lack of knowledge of best practices.
Clinical Relevance: Research shows that high-quality end-of-life care is possible in an intensive care unit. This article encourages nurses to be imaginative and take an individual approach to provide the best possible end-of-life care for patients and their family members.
Purpose of Paper: To provide recommendations for high-quality end-of-life care for patients and family members.
Content Covered: This article touches on the following domains: end-of-life decision-making, place to die, patient comfort, family presence in the intensive care unit, visiting children, family needs, preparing the family, staff presence, when the patient dies, after-death care of the family, and caring for staff.
In the setting of the coronavirus disease 2019 (COVID-19) pandemic, new strategies are needed to address the unique and significant palliative care (PC) needs of patients with COVID-19 and their families, particularly when health systems are stressed by patient surges. Many PC teams rely on referral-based consultation methods that can result in needs going unidentified and/or unmet. Here, we describe a novel system to proactively identify and meet the PC needs of all patients with COVID-19 being cared for in our hospital's intensive care units. Patients were screened through a combination of chart review and brief provider interview, and PC consultations were provided via telemedicine for those with unmet needs identified. In the first six weeks of operation, our pilot program of proactive screening and outreach resulted in PC consultation for 12 of the 29 (41%) adult patients admitted to the intensive care unit with COVID-19 at our institution. Consultations were most commonly for patient and family support as well as for goals of care and advance care planning, consistent with identified PC needs within this unique patient population.
Background: The 3 Wishes Project is a semistructured program that improves the quality of care for patients dying in the intensive care unit by eliciting and implementing wishes. This simple intervention honors the legacy of patients and eases family grief, forging human connections between family members and clinicians.
Aim: To examine how the 3 Wishes Project enables collective patterns of compassion between patients, families, clinicians, and managerial leaders in the intensive care unit.
Design: Using a qualitative descriptive approach, interviews and focus groups were used to collect data from family members of dying patients, clinicians, and institutional leaders. Unconstrained directed qualitative content analysis was performed using Organizational Compassion as the analytic framework.
Setting/participants: Four North American intensive care units, participants were 74 family members of dying patients, 72 frontline clinicians, and 20 managerial leaders.
Results: The policies and processes of the 3 Wishes Project exemplify organizational compassion by supporting individuals in the intensive care unit to collectively notice, feel, and respond to suffering. As an intervention that enables and empowers clinicians to engage in acts of kindness to enhance end-of-life care, the 3 Wishes Project is particularly well situated to encourage collective responses to suffering and promote compassion between patients, family members, and clinicians.
Conclusions: Examining the 3 Wishes Project through the lens of organizational compassion reveals the potential of this program to cultivate the capacity for people to collectively notice, feel, and respond to suffering. Our data document multidirectional demonstrations of compassion between clinicians and family members, forging the type of human connections that may foster resilience.
Context: Keepsakes are a relatively unexplored form of bereavement support that is frequently provided as part of the 3 Wishes Project (3WP). The 3WP is a palliative care intervention in which individualized wishes are implemented in the adult intensive care unit for dying patients and their families.
Objectives: We aimed to characterize and enumerate the keepsakes that were created as part of the 3WP, and to understand their value from the perspective of bereaved family members.
Methods: We performed a secondary analysis of family interviews during a multi-center study on the 3WP and characterized all wishes that involved keepsakes. Sixty interviews with family members regarding the 3WP were re-analyzed using qualitative analysis to identify substantive themes related to keepsakes.
Results: Of 730 patients, 345 (47%) received keepsakes as part of their participation in 3WP. The majority of keepsakes were either tangible items that served as reminders of the patient’s presence (thumbprints, locks of hair) or technology-assisted items (photographs, word clouds). The median cost per keepsake wish was $8.50 (IQR $2.00-$25.00). Qualitative analysis revealed two major themes: 1) Keepsakes are tangible items that are highly valued by family members, and 2) The creation of the keepsake with clinical staff is valued and viewed as a gesture of compassion.
Conclusion: Keepsakes are common wishes that clinicians in the ICU are able to provide and sometimes co-create with families when patients are dying. Both the offering to create the keepsake and receipt of the final product are perceived by family members as helpful.
Background: The use of formalized criteria (or triggers) for palliative care services (PCSs) has been associated with increased use of PCSs in the intensive care unit (ICU).
Objective: To explore the utility/validity of frailty as a trigger for providing PCSs.
Design: This is a prospective cohort study.
Setting/Subjects: Older adults (age =50 years) admitted to ICUs were enrolled.
Measurements: We measured frailty using the Clinical Frailty Scale. We reviewed electronic health records for the presence/absence of six evidence-based triggers, the use and quality of specialty palliative care (SPC), and markers of primary palliative care (PPC). We used descriptive statistics to describe the differences in PPC, SPC, and six-month mortality by frailty and by the presence/absence of triggers.
Results: In a study population of 302 older adults, mean (standard deviation) age 67.2 years (10.5), 151 (50%) were frail and 105 (34.8%) had =1 trigger for PCSs. Of the 151 (55.6%) frail patients, 84 had no triggers for PCSs, despite a 46.4% six-month mortality in this group. Patients with =1 trigger had higher rates of SPC than those without (39.1% vs. 18.3%, p < 0.001); frail patients also had higher SPC than nonfrail patients (32.5% vs. 18.5%, p = 0.006). Patients with =1 trigger had higher rates of PPC than those without (66.7% vs. 44.2%, p < 0.001); no statistically significant difference in PPC was found by frailty (56.3% vs. 47.7%, p = 0.134).
Conclusion: The rates of PCSs and six-month mortality by frailty are consistent with frailty being a valid trigger for PCSs in ICUs; the high prevalence of frailty relative to triggers suggests that ways to increase PCSs would be needed.
Due to stringent but necessary infection control mandates, the COVID-19 pandemic is increasingly resulting in family separation from loved ones admitted to intensive care units (ICUs). Even in normal circumstances, ICU families frequently experience significant psychological dysfunction—including posttraumatic stress disorder and other trauma-related reactions, especially during the end of life period. The COVID pandemic likely will exacerbate these reactions as more and more families are being barred from the ICU. Consequently, ICU families are facing additional barriers in fully understanding the complex medical needs of their loved ones (and hence being able to make informed care decisions on their behalf); establishing rapport and bonding with nurses and other members of the ICU treatment team; and, in the event that a loved one passes, achieving closure. ICU health care providers can take steps to mitigate these outcomes by being mindful of the unique stressors ICU families are currently facing and tailoring their communication and behavior accordingly.
Introduction: Intensive care units are contexts in which, due to the remarkable existence of particularly technological resources, interventions are promoted to extend the life of people who experience highly complex health situations. This ability can lead to a culture of death denial where the possibility of implementing futile care and treatment cannot be excluded.
Objective: To describe nurses' perceptions of adult intensive care units regarding the therapeutic futility of interventions implemented to persons in critical health conditions.
Method: Review of the literature following the Scoping Review protocol of the Joanna Briggs Institute. The Population, Concept, and Context mnemonic was used to elaborate the research question and the research was performed using the EBSCOHost search engine in the CINAHL Complete databases, MEDLINE Complete, Cochrane Central Register of Controlled Trials, and Cochrane Database of Systematic Reviews to identify studies published between 1990 and 2019. Seven studies were selected.
Results: Nurses consider that therapeutic futility, a current problem in adult intensive care units, may have a negative impact on persons in critical health conditions and that contributes directly to resource expenditure and moral conflicts and consequently leads to emotional exhaustion.
Conclusion: Due to the complexity of this concept, knowing and understanding people's and families' perceptions is crucial to the decision-making process, for which reason nurses can play a key role in managing these situations.
Background: Decision making regarding the treatment of neonates with poor prognoses is difficult for healthcare staff working in the neonatal intensive care unit (NICU). This study aimed to investigate the attitudes of physicians and nurses about the value of life and ethical decision making when encountering neonates with poor prognosis in the NICU.
Methods: This cross-sectional study was conducted in five NICUs of five hospitals in Tehran city, Iran. The attitudes of 144 pediatricians, gynecologists and nurses were assessed using the questionnaire of attitude toward the value of life and agreement on intensive care management based on three hypothetical case scenarios of neonates with poor prognosis. Data were analyzed using descriptive and inferential statistics via the SPSS software.
Results: The negative agreement on the no initiation of intensive care measures and the discontinuation of resuscitation in neonates with poor prognosis was more than the positive agreement. Also, various factors influenced the participants' decision making for the provision of care to neonates. Regarding the case scenarios, the participants agreed on the provision of aggressive, conservative, and palliative care with various frequencies. This study confirms the importance of healthcare providers' perspectives and their impacts on ethical decision making. The participants favored the value or sacredness of life and agreed on the use of all therapeutic measures for saving the lives of neonates with poor prognosis.
Conclusion: More studies are required to improve our understandings of factors influencing ethical decision making by healthcare providers when encountering neonates with poor prognosis in NICUs.
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.