Patient Recollection of ICU Procedural Pain and Post ICU Burden: The Memory Study.

OBJECTIVE: To assess patients' recollections of in-ICU procedural pain and its impact on post-ICU burden. DESIGN: Prospective longitudinal study of patients who underwent ICU procedures. SETTING: Thirty-four ICUs in France and Belgium. PATIENTS: Two hundred thirty-six patients who had undergone ICU procedures. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Patients were interviewed 3-16 months after hospitalization about: 1) recall of procedural pain intensity and pain distress (on 0-10 numeric rating scale); 2) current pain; that is, having pain in the past week that was not present before hospitalization; and 3) presence of traumatic stress (Impact of Events Scale). For patients who could rate recalled procedural pain intensity (n = 56) and pain distress (n = 43), both were significantly higher than their median (interquartile range) in ICU procedural pain scores (pain intensity: 5 [4-7] vs 3 [2.5-5], p < 0.001; pain distress: 5 [2-6] vs 2 [0-6], p = 0.003, respectively.) Current pain was reported in 14% of patients. When comparing patients with and without current pain, patients with current pain recalled even greater ICU procedural pain intensity and pain distress scores than patients without current pain: pain intensity, 8 (6-8) versus 5 (3.25-7); p = 0.002 and pain distress, 7 (5-8) versus 4 (2-6); p = 0.01, respectively. Patients with current pain also had significantly higher Impact of Events Scale scores than those without current pain (8.5 [3.5-24] vs 2 [0-10]; p < 0.001). CONCLUSION: Many patients remembered ICU, with far fewer able to rate procedure-associated pain. For those able to do so, recalled pain intensity and pain distress scores were significantly greater than reported in ICU. One in seven patients was having current pain, recalling even higher ICU procedural pain scores and greater traumatic stress when compared with patients without current pain. Studies are needed to assess the impact of ICU procedural pain on post-ICU pain recall, pain status over time, and the relationship between postdischarge pain status and post-ICU burden.

Complicated grief after death of a relative in the intensive care unit.

An increased proportion of deaths occur in the intensive care unit (ICU). We performed this prospective study in 41 ICUs to determine the prevalence and determinants of complicated grief after death of a loved one in the ICU. Relatives of 475 adult patients were followed up. Complicated grief was assessed at 6 and 12 months using the Inventory of Complicated Grief (cut-off score >25). Relatives also completed the Hospital Anxiety and Depression Scale at 3 months, and the Revised Impact of Event Scale for post-traumatic stress disorder symptoms at 3, 6 and 12 months. We used a mixed multivariate logistic regression model to identify determinants of complicated grief after 6 months. Among the 475 patients, 282 (59.4%) had a relative evaluated at 6 months. Complicated grief symptoms were identified in 147 (52%) relatives. Independent determinants of complicated grief symptoms were either not amenable to changes (relative of female sex, relative living alone and intensivist board certification before 2009) or potential targets for improvements (refusal of treatment by the patient, patient died while intubated, relatives present at the time of death, relatives did not say goodbye to the patient, and poor communication between physicians and relatives). End-of-life practices, communication and loneliness in bereaved relatives may be amenable to improvements.

Research Participation for Bereaved Family Members: Experience and Insights From a Qualitative Study.

BACKGROUND: Research has highlighted potential negative health outcomes for bereaved family members after loss of a loved one in the ICU and has helped identify areas for intervention. The findings exist because these family members agreed to participate in research studies; but little is known about their experience of research participation. OBJECTIVE: To understand why family members participate in bereavement research and the benefits of participating in such research. DESIGN: Qualitative study using interviews with bereaved family members as well as letters written by bereaved family members. SETTING: Forty-one ICUs in France. SUBJECTS: Family members who lost a loved one in the ICU. MEASUREMENTS AND MAIN RESULTS: Thematic analysis was used and was based on 54 narratives, 52 letters, and written annotations on 150 questionnaires. Regarding reasons to participate and benefits of research participation, 6 themes emerged: 1) to say thank you to the ICU team, 2) to help other bereaved family members, 3) to express myself from a distance, 4) to not feel abandoned, 5) to share difficult emotions and to help make meaning of the death, and 6) to receive support and care. CONCLUSION: Bereavement research is possible after loss of a loved one in the ICU and may even be beneficial for family members. Exploring families' experiences of research participation helps define specific family needs in this setting. After the loss of a loved one in the ICU, bereaved families need opportunities to voice their feelings about their experience in the ICU and to give meaning to the end-of-life process; families also need to feel that they are still cared for. Support for the family may need to be developed after loss of a loved one in the ICU in the form of condolence letters, phone calls, or postintensive care meetings.

Intensive care unit admission in chronic obstructive pulmonary disease: patient information and the physician's decision-making process.

INTRODUCTION: ICU admission is required in more than 25% of patients with chronic obstructive pulmonary disease (COPD) at some time during the course of the disease. However, only limited information is available on how physicians communicate with COPD patients about ICU admission. METHODS: COPD patients and relatives from 19 French ICUs were interviewed at ICU discharge about their knowledge of COPD. French pulmonologists self-reported their practices for informing and discussing intensive care treatment preferences with COPD patients. Finally, pulmonologists and ICU physicians reported barriers and facilitators for transfer of COPD patients to the ICU and to propose invasive mechanical ventilation. RESULTS: Self-report questionnaires were filled in by 126 COPD patients and 102 relatives, and 173 pulmonologists and 135 ICU physicians were interviewed. For 41% (n = 39) of patients and 54% (n = 51) of relatives, ICU admission had never been expected prior to admission. One half of patients were not routinely informed by their pulmonologist about possible ICU admission at some time during the course of COPD. Moreover, treatment options (that is, non-invasive ventilation, intubation and mechanical ventilation or tracheotomy) were not explained to COPD patients during regular pulmonologist visits. Pulmonologists and ICU physician have different perceptions of the decision-making process pertaining to ICU admission and intubation. CONCLUSIONS: The information provided by pulmonologists to patients and families concerning the prognosis of COPD, the risks of ICU admission and specific care could be improved in order to deliver ICU care in accordance with the patient's personal values and preferences. Given the discrepancies in the decision-making process between pulmonologists and intensivists, a more collaborative approach should probably be discussed.

Postintensive care unit psychological burden in patients with chronic obstructive pulmonary disease and informal caregivers: A multicenter study.

OBJECTIVE: To determine the prevalence and risk factors of symptoms of anxiety, depression, and posttraumatic stress disorder-related symptoms in patients with chronic obstructive pulmonary disease and their relatives after an intensive care unit stay. DESIGN: Prospective multicenter study. SETTING: Nineteen French intensive care units. SUBJECTS: One hundred twenty-six patients with chronic obstructive pulmonary disease who survived an intensive care unit stay and 102 relatives. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Patients and relatives were interviewed at intensive care unit discharge and 90 days later to assess symptoms of anxiety and depression using Hospital Anxiety and Depression Scale (HADS) and posttraumatic stress disorder-related symptoms using the Impact of Event Scale (IES). At intensive care unit discharge, 90% of patients recollected traumatic psychological events in the intensive care unit. At day 90, we were able to conduct telephone interviews with 53 patients and 47 relatives. Hospital Anxiety and Depression Scale scores indicated symptoms of anxiety and depression in 52% and 45.5% of patients at intensive care unit discharge and in 28.3% and 18.9% on day 90, respectively. Corresponding prevalence in relatives were 72.2% and 25.7% at intensive care unit discharge and 40.4% and 14.9% on day 90, respectively. The Impact of Event Scale indicated posttraumatic stress disorder-related symptoms in 20.7% of patients and 29.8% of relatives on day 90. Peritraumatic dissociation assessed using the Peritraumatic Dissociative Experiences Questionnaire was independently associated with posttraumatic stress disorder-related symptoms in the patients and relatives. Previous intensive care unit experience and recollection of bothersome noise in the intensive care unit predicted posttraumatic stress disorder-related symptoms in the patients. CONCLUSIONS: Psychiatric symptoms were found to be common in a group of 126 patients with chronic obstructive pulmonary disease who survived an intensive care unit stay and their relatives at intensive care unit discharge and 90 days later. Peritraumatic dissociation at intensive care unit discharge was found to independently predict posttraumatic stress disorder-related symptoms in this sample of patients and relatives.

Important questions asked by family members of intensive care unit patients.

OBJECTIVES: Relatives often lack important information about intensive care unit patients. High-quality information is crucial to help relatives overcome the often considerable situational stress and to acquire the ability to participate in the decision-making process, most notably regarding the appropriate level of care. We aimed to develop a list of questions important for relatives of patients in the intensive care unit. DESIGN, SETTING, AND PARTICIPANTS: This was a multicenter study. Questions asked by relatives of intensive care unit patients were collected from five different sources (literature, panel of 28 intensive care unit nurses and physicians, 1-wk survey of nurses and 1-wk survey of physicians in 14 intensive care units, and in-depth interviews with 14 families). After a qualitative analysis (framework approach and thematic analysis), questions were rated by 22 relatives and 14 intensive care unit physicians, and the ratings were analyzed using principal component analysis and hierarchical clustering. RESULTS: The five sources produced 2,135 questions. Removal of duplicates and redundancies left 443 questions, which were distributed among nine predefined domains using a framework approach ("diagnosis," "treatment," "prognosis," "comfort," "interaction," "communication," "family," "end of life," and "postintensive care unit management"). Thematic analysis in each domain led to the identification of 46 themes, which were reworded as 46 different questions. Ratings by relatives and physicians showed that 21 of these questions were particularly important for relatives of intensive care unit patients. CONCLUSION: This study increases knowledge about the informational needs of relatives of intensive care unit patients. This list of questions may prove valuable for both relatives and intensive care unit physicians as a tool for improving communication in the intensive care unit.

Assessing burden in families of critical care patients.

OBJECTIVE: To provide critical care clinicians with information on validated instruments for assessing burden in families of critical care patients. DATA SOURCES: PubMed (1979-2009). STUDY SELECTION: We included all quantitative studies that used a validated instrument to evaluate the prevalence of, and risk factors for, burden on families. DATA EXTRACTION AND SYNTHESIS: We extracted the descriptions of the instruments used and the main results. Family burden after critical illness can be detected reliably and requires preventive strategies and specific treatments. Using simple face-to-face interviews, intensivists can learn to detect poor comprehension and its determinants. Instruments for detecting symptoms of anxiety, depression, or stress can be used reliably even by physicians with no psychiatric training. For some symptoms, the evaluation should take place at a distance from intensive care unit discharge or death. Experience with families of patients who died in the intensive care unit and data from the literature have prompted studies of bereaved family members and the development of interventions aimed at decreasing guilt and preventing complicated grief. CONCLUSIONS: We believe that burden on families should be assessed routinely. In clinical studies, using markers for burden measured by validated tools may provide further evidence that effective communication and efforts to detect and to prevent symptoms of stress, anxiety, or depression provide valuable benefits to families.

Qualitative research: adding drive and dimension to clinical research.

Qualitative research and its methods stem from the social sciences and can be used to describe and interpret complex phenomena that involve individuals' views, beliefs, preferences, and subjective responses to places and people. Thus, qualitative research explores the many subjective factors that may influence patient outcomes, staff well-being, and healthcare quality, yet fail to lend themselves to the hypothesis-testing approach that characterizes quantitative research. Qualitative research is valuable in the intensive care unit to explore organizational and cultural issues and to gain insight into social interactions, healthcare delivery processes, and communication. Qualitative research generates explanatory models and theories, which can then serve to devise interventions, whose efficacy can be studied quantitatively. Thus, qualitative research works synergistically with quantitative research, providing new impetus to the research process and a new dimension to research findings. Qualitative research starts with conceptualizing the research question, choosing the appropriate qualitative strategy, and designing the study; rigorous methods specifically designed for qualitative research are then used to conduct the study, analyze the data, and verify the findings. The researcher is the data-collecting instrument, and the data are the participants' words and behaviors. Data coding methods are used to describe experiences, discover themes, and build theories. In this review, we outline the rationale and methods for conducting qualitative research to inform critical care issues. We provide an overview of available qualitative methods and explain how they can work in close synergy with quantitative methods. To illustrate the effectiveness of combining different research methods, we will refer to recent qualitative studies conducted in the intensive care unit.

Formal Academic Training on Ethics May Address Junior Physicians' Needs.

BACKGROUND: Surveys have highlighted perceived deficiencies among ICU residents in end-of-life care, symptom control, and confidence in dealing with dying patients. Lack of formal training may contribute to the failure to meet the needs of dying patients and their families. The objective of this study was to evaluate junior intensivists' perceptions of triage and of the quality of the dying process before and after formal academic training. METHODS: Formal training on ethics was implemented as a part of resident training between 2007 and 2012. A cross-sectional survey was performed before (2007) and after (2012) this implementation. This study included 430 junior intensivists who were interviewed during these periods. RESULTS: More responders attended a dedicated training course on ethics and palliative care during 2012 (38.5%) than during 2007 (17.4%; P < .0001). During 2012, respondents reported less discomfort and fewer uncertainties regarding decisions about limiting life-sustaining treatment (17.7% vs 39.1% in 2007; P < .0001) or the triage process (48.5% vs 69.4% in 2007; P < .0001). Factors independently associated with positive perceptions of the dying process were physician's age (OR, 1.19 per year; 95% CI, 1.09-1.25) and male sex (OR, 1.61; 95% CI, 1.05-2.47). Conversely, anxiety about family members' reactions (OR, 0.58; 95% CI, 0.0.37-0.87) and lack of training (OR, 0.29; 95% CI, 0.17-0.50) were associated with negative perceptions of this process. CONCLUSIONS: Formal training dedicated to ethics and palliative care was associated with a more comfortable perception of the dying process. This training may decrease the uncertainty and discomfort of junior intensivists in these situations.

Involvement of ICU families in decisions: fine-tuning the partnership.

Families of patients are not simple visitors to the ICU. They have just been separated from a loved one, often someone they live with, either abruptly or, in nearly half the cases, because a chronic condition has suddenly worsened. They must cope with a serious illness of a loved one, while having to adapt to the unfamiliar and intimidating ICU environment. In many cases, the outcome of the critical illness is uncertain, a situation that causes considerable distress to the relatives. As shown by our research group and others, families exhibit symptoms of anxiety (70%) and depression (35%) in the first few days after admission, as well as symptoms of stress (33%) and difficulty understanding the information delivered by the healthcare staff (50%). Furthermore, relatives of patients who die in the ICU are at risk for psychiatric syndromes such as generalized anxiety, panic attacks, depression, and posttraumatic stress syndrome. In this setting of psychological distress, families are asked to consider sharing in healthcare decisions about their loved one in the ICU. This article aims to foster the debate about the shared decision-making process. We have three objectives: to transcend the overly simplistic position that opposes paternalism and autonomy, to build a view founded only on an evaluation of actual practice and experience in the field, and to keep the focus squarely on the patient. Families want information and communication time from the staff. Nurses and physicians need to understand that families can share in decisions only if the entire ICU staff actively promotes family involvement and, of course, if the family wants to participate in all or part of the decision-making process.

Outcomes of critically ill patients with hematologic malignancies: prospective multicenter data from France and Belgium--a groupe de recherche respiratoire en réanimation onco-hématologique study.

PURPOSE Patients with hematologic malignancies are increasingly admitted to the intensive care unit (ICU) when life-threatening events occur. We sought to report outcomes and prognostic factors in these patients. PATIENTS AND METHODS Ours was a prospective, multicenter cohort study of critically ill patients with hematologic malignancies. Health-related quality of life (HRQOL) and disease status were collected after 3 to 6 months. Results Of the 1,011 patients, 38.2% had newly diagnosed malignancies, 23.1% were in remission, and 24.9% had received hematopoietic stem-cell transplantations (HSCT, including 145 allogeneic). ICU admission was mostly required for acute respiratory failure (62.5%) and/or shock (42.3%). On day1, 733 patients (72.5%) received life-supporting interventions. Hospital, day-90, and 1-year survival rates were 60.7%, 52.5%, and 43.3%, respectively. By multivariate analysis, cancer remission and time to ICU admission less than 24 hours were associated with better hospital survival. Poor performance status, Charlson comorbidity index, allogeneic HSCT, organ dysfunction score, cardiac arrest, acute respiratory failure, malignant organ infiltration, and invasive aspergillosis were associated with higher hospital mortality. Mechanical ventilation (47.9% of patients), vasoactive drugs (51.2%), and dialysis (25.9%) were associated with mortality rates of 60.5%, 57.5%, and 59.2%, respectively. On day 90, 80% of survivors had no HRQOL alterations (physical and mental health similar to that of the overall cancer population). After 6 months, 80% of survivors had no change in treatment intensity compared with similar patients not admitted to the ICU, and 80% were in remission. CONCLUSION Critically ill patients with hematologic malignancies have good survival, disease control, and post-ICU HRQOL. Earlier ICU admission is associated with better survival.

Health-related quality of life in family members of intensive care unit patients.

OBJECTIVE: The intensive care unit (ICU) experience has been reported to cause adverse health effects in families during and after the ICU stay. The objective of this study was to evaluate health-related quality of life (HRQOL) in relatives of patients 90 days after ICU discharge or death. DESIGN: Multicenter observational study. SETTING: Twenty-one ICUs in France. PARTICIPANTS: Among 459 eligible relatives of ICU patients, 284 (62%) were included in the study. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: During a telephone interview, the SF-36 was completed to assess HRQOL 90 days after ICU discharge or death. The physical component summary score of the SF-36 was normal (89/100 [66-94]) but the mental component summary score showed substantial impairments (emotional role, 67 [50-80]; social functioning, 70 [60-90]; vitality, 60 [45-70]; and mental health, 60 [48-2]). Moreover, 35.9% of relatives were taking anxiolytic or antidepressant drugs, and 8.4% were taking psychotropic agents prescribed since the discharge or death of the patient. Among factors independently associated with a worse mental score, 2 were patient-related (admission for shock or implementation of end-of-life decision), 6 were family-related (older age, female gender, child of the patient, low income, chronic disease, and newly prescribed psychotropic medications), and 1 was related to the ICU experience (perceived conflicts between ICU staff and relatives). CONCLUSIONS: The SF-36 showed evidence of impaired mental health in relatives of ICU patients 90 days after discharge. Better end-of-life care, psychiatric support after the ICU experience, and better conflict prevention and resolution are potential targets for improvement.