Risk of post-traumatic stress symptoms in family members of intensive care unit patients

RATIONALE: Intensive care unit (ICU) admission of a relative is a stressful event that may cause symptoms of post-traumatic stress disorder (PTSD). OBJECTIVES: Factors associated with these symptoms need to be identified. METHODS: For patients admitted to 21 ICUs between March and November 2003, we studied the family member with the main potential decision-making role. MEASUREMENTS: Ninety days after ICU discharge or death, family members completed the Impact of Event Scale (which evaluates the severity of post-traumatic stress reactions), Hospital Anxiety and Depression Scale, and 36-item Short-Form General Health Survey during a telephone interview. Linear regression was used to identify factors associated with the risk of post-traumatic stress symptoms. MAIN RESULTS: Interviews were obtained for family members of 284 (62%) of the 459 eligible patients. Post-traumatic stress symptoms consistent with a moderate to major risk of PTSD were found in 94 (33.1%) family members. Higher rates were noted among family members who felt information was incomplete in the ICU (48.4%), who shared in decision making (47.8%), whose relative died in the ICU (50%), whose relative died after end-of-life decisions (60%), and who shared in end-of-life decisions (81.8%). Severe post-traumatic stress reaction was associated with increased rates of anxiety and depression and decreased quality of life. CONCLUSION: Post-traumatic stress reaction consistent with a high risk of PTSD is common in family members of ICU patients and is the rule among those who share in end-of-life decisions. Research is needed to investigate PTSD rates and to devise preventive and early-detection strategies.     

Family satisfaction in the ICU: differences between families of survivors and nonsurvivors

BACKGROUND: We previously noted that the families of patients dying in the ICU reported higher satisfaction with their ICU experience than the families of survivors. However, the reasons for this finding were unclear. In the current study, we sought to confirm these findings and identify specific aspects of care that were rated more highly by the family members of patients dying in the ICU compared to family members of ICU survivors. METHODS: A total of 539 family members with a patient in the ICU were surveyed. Family satisfaction was measured using the 24-item family satisfaction in the ICU questionnaire. Ordinal logistic regression identified which components of family satisfaction were associated with the patient's outcome (ie, whether the patient lived or died). RESULTS: A total of 51% of respondents had a loved one die in the ICU. Overall, the families of patients dying in the ICU were more satisfied with their ICU experience than were families of ICU survivors, and the largest differences were noted for care aspects directly affecting family members. Significant differences were found for inclusion in decision making, communication, emotional support, respect and compassion shown to family, and consideration of family needs (p<0.01). CONCLUSIONS: The families of patients dying in the ICU were more satisfied with their ICU experience than were the families of ICU survivors. The reasons for this difference were higher ratings on family-centered aspects of care. These findings suggest that efforts to improve the support of ICU family members should focus not only on the families of dying patients but also on the families of patients who survive their ICU stay.     

Impact of a family information leaflet on effectiveness of information provided to family members of intensive care unit patients: a multicenter, prospective, randomized, controlled trial

Comprehension and satisfaction are relevant criteria for evaluating the effectiveness of information provided to family members of intensive care unit (ICU) patients. We performed a prospective randomized trial in 34 French ICUs to compare comprehension of diagnosis, prognosis, treatment, and satisfaction with information provided by ICU caregivers, in ICU patient family representatives who did (n = 87) or did not (n = 88) receive a family information leaflet (FIL) in addition to standard information. An FIL designed specifically for this study was delivered at the first visit of the family representative: it provided general information on the ICU and hospital, the name of the ICU physician caring for the patient, a diagram of a typical ICU room with the names of all the devices, and a glossary of 12 terms commonly used in ICUs. Characteristics of the ICUs, patients, and family representatives were similar in the two groups. The FIL reduced the proportion of family members with poor comprehension from 40.9% to 11.5% (p < 0.0001). In the representatives with good comprehension, the FIL was associated with significantly better satisfaction (21 [18 to 24, quartiles] versus 27 [24 to 29, quartiles], p = 0.01). These results indicate that ICU caregivers should consider using an FIL to improve the effectiveness of the information they impart to families.     

Quality of dying in the ICU: ratings by family members

STUDY OBJECTIVES: To explore the quality of the dying experience and associations to higher quality ratings for people who died in an ICU. DESIGN: Retrospective study using medical record review and surveys of family members with the Quality of Dying and Death (QODD) instrument. SETTING: Four ICUs affiliated with a university and a Veterans Affairs Medical Center. PARTICIPANTS: Ninety-four family members of 38 ICU decedents. MEASUREMENTS AND RESULTS: We explored associations between components of the ICU experience and the overall rating of the quality of the dying experience. Overall, family members reported that symptoms were poorly controlled: pain under control most or all of the time in 47%, and breathing comfortably most or all of the time in 3% of patients. Families expressed a moderate and variable view of the quality of dying resulting in an overall ICU QODD score of 60 +/- 14 (on a scale of 0 to 100) [mean +/- SD]. Higher ICU QODD scores were associated with control of pain (r = 0.42, p = 0.009), control of events (r = 0.62, p < 0.001), a "preparation for death" aspect of the dying experience--feeling at peace with dying (r = 0.69, p < 0.001), and a "whole-person concern"--keeping one's dignity and self-respect (r = 0.50, p < 0.001). CONCLUSIONS: After adjusting for symptom and personal care scores, certain whole-person and preparation-for-death aspects of the dying process, and not aggressiveness of end-of-life care, remained the most associated to quality ratings. While future research should explore the important predictors of quality of dying in the ICU, this study suggests that care at the end of life in the ICU include not only managing pain, but also supporting dignity, respect, and peace, and maximizing patient control.     

Family member satisfaction with end-of-life decision making in the ICU

RATIONALE: Families of ICU patients may be at risk for increased psychological morbidity due to end-of-life decision making. The identification of chart-based quality indicators of palliative care that predict family satisfaction with decision making may help to guide interventions to improve decision making and family outcomes. OBJECTIVE: To determine patient and family characteristics and chart the documentation of processes of care that are associated with increased family satisfaction with end-of-life decision making for ICU patients. METHODS: We conducted a cohort study of ICU patients dying in 10 medical centers in the Seattle-Tacoma area. Measurement: Outcomes from family surveys included summary scores for family satisfaction with decision making and a single-item score that indicated feeling supported during decision making. Predictor variables were obtained from surveys and chart abstraction. Main results: The survey response rate was 41% (442 of 1,074 families responded). Analyses were conducted of 356 families with questionnaire and chart abstraction data. Family satisfaction with decision making was associated with the withdrawal of life support, and chart documentation of physician recommendations to withdraw life support, discussions of patients' wishes, and discussions of families' spiritual needs. Feeling supported during decision making was associated with the withdrawal of life support, spiritual care involvement, and chart documentation of physician recommendations to withdraw life support, expressions of families' wishes to withdraw life support, and discussions of families' spiritual needs. CONCLUSIONS: Increased family satisfaction with decision making is associated with withdrawing life support and the documentation of palliative care indicators including the following: physician recommendations to withdraw life support; expressions of patients' wishes; and discussions of families' spiritual needs. These findings provide direction for future studies to investigate approaches to improving family satisfaction in end-of-life decision making. In addition, because there were few nonwhites in this study, these results may not be generalizable to more diverse populations. Future studies should target diverse populations in order to test whether similar factors are similarly important for end-of-life decision making.     

Meeting the needs of intensive care unit patient families: a multicenter study

Intensive care unit (ICU) caregivers should seek to develop collaborative relationships with their patients' family members, based on an open exchange of information and aimed at helping family members cope with their distress and allowing them to speak for the patient if necessary. We conducted a prospective multicenter study of family member satisfaction evaluated using the Critical Care Family Needs Inventory. Forty-three French ICUs participated in the study. ICU characteristics, patient and family member demographics, and data on satisfaction were collected. Factors associated with satisfaction were identified using a Poisson regression model. A total of 637 patients were included in the study, and 920 family members completed the questionnaire. Seven predictors of family satisfaction were found: one family-related factor, namely, family of French descent and six caregiver-related factors, namely, no perceived contradictions in information given by caregivers; information provided by a junior physician; patient to nurse ratio 相似文献   

Communication of prognostic information for critically ill patients

STUDY OBJECTIVES: The purpose of this study was to determine whether the timing of prognostic information delivery by physicians is associated with caregiver satisfaction with communication or decision making in the ICU. DESIGN: Multicenter, prospective, longitudinal observational study. SETTING: Medical and surgical ICUs in a community and university hospital. PARTICIPANTS: Decision makers for critically ill patients. MEASUREMENTS AND RESULTS: Longitudinal surveys assessed both actual and desired frequency of communication with physicians, timing and content of physician prognosis, and subject satisfaction with physician communication and subject's role in decision making. Seventy subjects were enrolled and completed 216 surveys. Fifty-seven caregivers (81%) received prognostic information during the ICU stay, with a mean time between ICU admission and provision of prognostic information (prognostic interval) of 1.7 +/- 2.8 days (median, 1 day). This interval was not associated with patient age, severity of illness, clinical service, hospital, socioeconomic status, or prior patient ICU admission. A shorter prognostic interval was associated with increased satisfaction with communication, with a trend toward statistical significance (p = 0.06). Both the measured communication rate (p < 0.001) and subjects' desired communication rate with physicians decreased over time in the ICU (p < 0.001). Although 78% of subjects rated their overall satisfaction with frequency of communication as "good," "very good," or "excellent," their satisfaction with communication frequency decreased with time in the ICU (p = 0.006). CONCLUSIONS: Families of critically ill patients were generally satisfied with communication in the ICU; however, 19% were unable to recall receiving any prognostic information from physicians. Providing all decision makers with some prognostic information, even if it consists of a statement of uncertainty (as was commonly done in this study), may further improve satisfaction with ICU care. A widening gap between the actual and desired communication rate may result in a decline in communication satisfaction over the course of the ICU stay. This suggests that the capacity of physicians and other ICU personnel to manage families' communication expectations may positively influence caregiver satisfaction.     

Quality of dying and death in two medical ICUs: perceptions of family and clinicians

OBJECTIVE: We compared perceptions of the quality of dying and death in the ICU across nurses, resident physicians, attending physicians, and family members. The aim was to obtain a surrogate assessment of the quality of the dying process and examine differences in the perceptions of different types of raters. DESIGN: Cross-sectional survey of family members and ICU clinicians conducted following the death of enrolled patients. SETTING: Two medical ICUs at academic tertiary care medical centers. PATIENTS: Patients dying in the ICU (n = 68). MEASUREMENTS AND RESULTS: The previously validated Quality of Dying and Death (QODD) instrument was modified for use in the ICU. Within 48 h of the time of death, the nurse, resident, and attending physician caring for the patient were asked to complete the QODD. One month following the death, a designated family member was contacted and the QODD was administered on the telephone. Family members and attending physicians gave the most favorable ratings of death, while nurses and residents provided less favorable ratings. Significant differences between these groups were notable (p < 0.01) on items related to patient autonomy: maintaining dignity, being touched by loved ones, and the overall quality of death. CONCLUSIONS: The perception of dying and death in the ICU varies considerably between nurses, attending physicians, resident physicians, and family members. Further studies are needed to explain these differences and determine the utility of the ICU QODD instrument for assessing and improving the quality of end-of-life care in the ICU.     

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.     

End-of-life care in assisted living and related residential care settings: comparison with nursing homes

OBJECTIVES: To define the current state of end-of-life care in residential care/assisted living (RC/AL) facilities and nursing homes (NHs) and to compare these two types of care settings. DESIGN: Interviews of staff and family informants about deaths that occurred during a longitudinal study. SETTING: Fifty-five RC/AL facilities and 26 NHs in Florida, Maryland, New Jersey, and North Carolina. PARTICIPANTS: Two hundred twenty-four staff and family informants that best knew the 73 RC/AL residents and 72 NH residents who died in or within 3 days after discharge from a study facility. MEASUREMENTS: Telephone interviews conducted with the facility staff member who knew the decedent best and the family member who was most involved in care during the last month of life of the decedent. Data were collected on circumstances of death, perceptions of dying process, cause of death, care during the last month of life, mood, discomfort, and family satisfaction. RESULTS: Most decedents died in the facility where they had resided, and more than half of the subjects were alone when they died. Greater proportions of staff and family in the NHs knew that the resident's death was only days or weeks away. Both RC/AL and NH residents experienced few highly negative moods, and even on their most uncomfortable day, the overall discomfort was low for residents in both facility types. Summary ratings of family satisfaction were significantly higher for the RC/AL (32.1) than the NH (41.2) group (P=.016). CONCLUSION: These data suggest that end-of-life care in RC/AL settings appears similar in process and outcomes to that provided in NHs. Thus, aging and dying-in-place can effectively occur in RC/AL.     

Association between advance directives and quality of end-of-life care: a national study

OBJECTIVES: To examine the role of advance directives (ADs) 10 years after the Patient Self-Determination Act. DESIGN: Mortality follow-back survey. SETTING: People who died in a nursing home, hospital, or at home. PARTICIPANTS: Bereaved family member or other knowledgeable informant. MEASUREMENTS: Telephone interviewers that asked about the use of written ADs, use of life-sustaining treatment, and quality of care by asking whether staff provided desired symptom relief, treated the dying with respect, supported shared decision-making, coordinated care, and provided family with the needed information and emotional support. RESULTS: Of the 1,587 people who died, 70.8% had an AD. Persons who died at home with hospice or in a nursing home were more likely to have an AD. In addition, those with an AD were less likely to have a feeding tube (17% vs 27%) or use a respirator in the last month of life (11.8% vs 22.0%). Bereaved family members who reported that the decedent did not have an AD were more likely to report concerns with physician communication (adjusted odds ratio (AOR)=1.4, 95% confidence interval (CI)=1.1-1.6) and with being informed about what to expect (AOR=1.2, 95% CI=1.0-1.3). No statistically significant differences were observed in other outcomes. Even in those with an AD, important quality concerns remained; one in four reported an unmet need in pain, one in two reported inadequate emotional support for the patient, and one in three stated inadequate family emotional support. CONCLUSION: Bereaved family member report of completion of an AD was associated with greater use of hospice and fewer reported concerns with communication, yet important opportunities remain to improve the quality of end-of-life care.     

Family perspectives on end-of-life care experiences in nursing homes

PURPOSE: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. DESIGN AND METHODS: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. Interviews were taped and transcribed and then coded by a five-member, multidisciplinary team to identify overarching themes. RESULTS: Respondents report that the needs of dying patients are often insufficiently addressed by health care professionals. Their low expectations of nursing homes and their experiences cause many to become vigilant advocates. Respondents report that physicians are often "missing in action," and they desire more and better trained staff. They indicate that regulations reinforce task-focused rather than person-centered care and add to patient and family burden. Although hospice services are reported to enhance end-of-life care, respondents also report late referrals and occasional misunderstandings about the role and scope of hospice. IMPLICATIONS: Sustained efforts on many fronts are needed to improve end-of-life care in nursing homes. Policy recommendations are suggested.     

Toward shared decision making at the end of life in intensive care units: opportunities for improvement

BACKGROUND: In North America, families generally wish to be involved in end-of-life decisions when the patient cannot participate, yet little is known about the extent to which shared decision making occurs in intensive care units. METHODS: We audiotaped 51 physician-family conferences about major end-of-life treatment decisions at 4 hospitals from August 1, 2000, to July 31, 2002. We measured shared decision making using a previously validated instrument to assess the following 10 elements: discussing the nature of the decision, describing treatment alternatives, discussing the pros and cons of the choices, discussing uncertainty, assessing family understanding, eliciting patient values and preferences, discussing the family's role in decision making, assessing the need for input from others, exploring the context of the decision, and eliciting the family's opinion about the treatment decision. We used a mixed-effects regression model to determine predictors of shared decision making and to evaluate whether higher levels of shared decision making were associated with greater family satisfaction. RESULTS: Only 2% (1/51) of decisions met all 10 criteria for shared decision making. The most frequently addressed elements were the nature of the decision (100%) and the context of the decision to be made (92%). The least frequently addressed elements were the family's role in decision making (31%) and an assessment of the family's understanding of the decision (25%). In multivariate analysis, lower family educational level was associated with less shared decision making (partial correlation coefficient, 0.34; standardized beta, .3; P = .02). Higher levels of shared decision making were associated with greater family satisfaction with communication (partial correlation coefficient, 0.15; standardized beta, .09; P = .03). CONCLUSIONS: Shared decision making about end-of-life treatment choices was often incomplete, especially among less educated families. Higher levels of shared decision making were associated with greater family satisfaction. Shared decision making may be an important area for quality improvement in intensive care units.     

Trends in end-of-life ICU use among older adults with advanced lung cancer

BACKGROUND: There is increasing concern about the appropriateness of intensive medical care near the end of life in ICUs throughout the United States. As a result of hospice expansion in the 1990s, we hypothesized that ICU use decreased over time in older adults with advanced lung cancer. METHODS: Retrospective analysis using the linked Surveillance, Epidemiology and End Results Medicare database. There were 45,627 Medicare beneficiaries > or = 66 years of age with confirmed stage IIIB or IV lung cancer between January 1, 1992, and December 31, 2002, who died within a year of their cancer diagnosis from 1993 through 2002. RESULTS: ICU use in the last 6 months of life increased from 17.5% in 1993 to 24.7% in 2002 (p < 0.001). After adjusting for patient characteristics, there was a 6.6% annual increase in ICU use from 1993 to 2002. During the same period, hospice use had risen from 28.8 to 49.9% (p < 0.001). A total of 6.2% of patients received both end-of-life ICU care and hospice care, a percentage that increased over time. The total health-care cost for Medicare fee-for-service patients during last 6 months was $40,929 for ICU users and $27,160 for non-ICU users (p < 0.001). CONCLUSION: Despite increasing hospice use, ICU utilization among older adults dying with advanced lung cancer continued to rise in the United States during the 1990s.     

Processes of decision making and end-of-life care for patients with dementia in group homes in Japan

The aim of the present study was to clarify the processes of decision making and end-of-life care for patients with dementia in the group homes in Japan. We investigated 45 group homes for patients with dementia regarding cases of end-of-life care during a 3-year period between March 2004 and February 2007. Thirty-three cases from respondent group homes were collected. Patients had middle or advanced levels of dementia, with only six cases of confirmed wishes about the place of death. In most cases, managing directors confirmed family members' wishes (66.7%) and performed a central role in planning for end-of-life care (60.6%). About one-third of patients (36.4%) were able to eat by mouth until death. Intravenous feeding was mainly used when the patient was unable to take anything by mouth (51.5%). Methods of sustenance were usually previously decided by consulting with patient or families (45.5%). Approximately half of patients (54.6%) were attended by family members who stayed in the group home. Future research should examine the quality of end-of-life care in the group homes using evaluations of quality of life (QoL) for patients and family members.     

Bereaved family member perceptions of quality of end-of-life care in U.S. regions with high and low usage of intensive care unit care

OBJECTIVES: To compare the quality of end-of-life care of persons dying in regions of differing practice intensity. DESIGN: Mortality follow-back survey. SETTING: Geographic regions in the highest and lowest deciles of intensive care unit (ICU) use. PARTICIPANTS: Bereaved family member or other knowledgeable informants. MEASUREMENTS: Unmet needs, concerns, and rating of quality of end-of-life care in five domains (physical comfort and emotional support of the decedent, shared decision-making, treatment of the dying person with respect, providing information and emotional support to family members). RESULTS: Decedents in high- (n=365) and low-intensity (n=413) hospital service areas (HSAs) did not differ in age, sex, education, marital status, leading causes of death, or the degree to which death was expected, but those in the high-intensity ICU HSAs were more likely to be black and to live in nonrural areas. Respondents in high-intensity HSAs were more likely to report that care was of lower quality in each domain, and these differences were statistically significant in three of five domains. Respondents from high-intensity HSAs were more likely to report inadequate emotional support for the decedent (relative risk (RR)=1.2, 95% confidence interval (CI)=1.0-1.4), concerns with shared decision-making (RR=1.8, 95% CI=1.0-2.9), inadequate information about what to expect (RR=1.5, 95% CI=1.3-1.8), and failure to treat the decedent with respect (RR=1.4, 95% CI=1.0-1.9). Overall ratings of the quality of end-of-life care were also significantly lower in high-intensity HSAs. CONCLUSION: Dying in regions with a higher use of ICU care is not associated with improved perceptions of quality of end-of-life care.     

The personal and social context of planning for end-of-life care

OBJECTIVES: To examine the potential facilitators of or deterrents to end-of-life planning for community-dwelling older adults, including personal (health-related and sociodemographic) and social (physician and family) influences. DESIGN: In-person interviews with older adults, telephone interviews with physicians and family members. SETTING: Cleveland, Ohio. PARTICIPANTS: Two hundred thirty-one adults aged 65 to 99 who were aging in place, 99 of their primary care physicians, and 127 of their family members. MEASUREMENTS: Questions assessing older adults' discussions with others about end-of-life plans, implementation of advance directives, and physical (Older American Resources and Services) illness index and mental (Short Portable Mental Status Questionnaire) health status. RESULTS: Just fewer than half of older adults had executed an advance directive and discussed their wishes with others. Only personal characteristics of elderly individuals were related to end-of-life plans, with whites, unmarried individuals, and younger adults more likely to have made preparations. Older adults' health status, as evaluated by the patient, physician, and caregiver, did not relate to the tendency to have made advance care plans. Older adults' family members were much more likely to report knowledge of advance care plans than were physicians. CONCLUSION: These findings suggest that many physicians are not talking with their patients about their end-of-life wishes. Furthermore, the propensity to have such discussions may relate more to the personal preferences and level of comfort of patients, physicians, and family members than on the health status of the older adult.     

Ethics and end-of-life care for adults in the intensive care unit

The intensive care unit (ICU) is where patients are given some of the most technologically advanced life-sustaining treatments, and where difficult decisions are made about the usefulness of such treatments. The substantial regional variability in these ethical decisions is a result of many factors, including religious and cultural beliefs. Because most critically ill patients lack the capacity to make decisions, family and other individuals often act as the surrogate decision makers, and in many regions communication between the clinician and family is central to decision making in the ICU. Elsewhere, involvement of the family is reduced and that of the physicians is increased. End-of-life care is associated with increased burnout and distress among clinicians working in the ICU. Since many deaths in the ICU are preceded by a decision to withhold or withdraw life support, high-quality decision making and end-of-life care are essential in all regions, and can improve patient and family outcomes, and also retention of clinicians working in the ICU. To make such a decision requires adequate training, good communication between the clinician and family, and the collaboration of a well functioning interdisciplinary team.     

Breaking the "bad" news to patients and families: preparing to have the conversation about end-of-life and hospice care

The ability to compassionately communicate difficult or "bad news" to a patient and family is essential to the provision of quality care at the end-of-life. Preparing to have these conversations requires a deliberate multilevel approach that includes: 1) becoming comfortable with end-of-life issues; 2) understanding the scope of the experiences from the patient's and family's perspectives; 3) understanding the full range of choices and options you can offer patients and families regarding their care (including hospice care); 4) developing a "can do" approach toward your involvement with end-of-life care; and 5) learning to effectively share and receive information in a compassionate manner. The following article explores this multilevel approach in an effort to assist physicians and other health care professions in supporting patients and families in their transition from curative care to hospice and palliative care.