Dying in the ICU: perspectives of family members

OBJECTIVE: To describe the perspectives of family members to the care provided to critically ill patients who died in the ICU. DESIGN: Multicenter, prospective, observational study. SETTING: Six university-affiliated ICUs across Canada. METHODS: Patients who received mechanical ventilation for > 48 h and who died in the ICU were eligible for this study. Three to four weeks after the patient's death, we mailed a validated questionnaire to one selected family member who made at least one visit to the patient in the ICU. We obtained self-rated levels of satisfaction with key aspects of end-of-life care, communication, and decision making, and the overall ICU experience. Main results: Questionnaires were mailed to 413 family members; 256 completed surveys were returned (response rate, 62.0%). In the final hours before the death of the patient, family members reported that patients were "totally comfortable" (34.8%), "very comfortable" (23.8%), or "mostly comfortable" (32.0%). Family members felt "very supported" (57.0%) and "supported" (30.7%) by the health-care team. Most (82.0%) believed that the patient's life was neither prolonged nor shortened unnecessarily. Most family members (90.4%) preferred some form of shared decision making. Overall, 52% of families rated their satisfaction with care as "excellent," 31% rated care as "very good," 10% as "good," 4% as "fair," and 2% as "poor." Overall satisfaction with end-of-life care was significantly associated with completeness of information received by the family member, respect and compassion shown to patient and family member, and satisfaction with amount or level of health care received. CONCLUSIONS: The majority of families of patients who died in participating ICUs were satisfied with the end-of-life care provided. Adequate communication, good decision making, and respect and compassion shown to both the dying patient and their family are key determinants to family satisfaction.     

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.     

Satisfaction with hospital at home care

OBJECTIVES: To examine differences in satisfaction with acute care between patients who received treatment in a physician-led substitutive Hospital at Home program and those who received usual acute hospital care. DESIGN: Survey questionnaire of participants in prospective, nonrandomized clinical trial. SETTING: Three Medicare-managed care health systems and a Department of Veterans Affairs Medical Center. PARTICIPANTS: Two hundred fourteen community-dwelling elderly patients who required acute hospital admission for community-acquired pneumonia, exacerbation of chronic heart failure, exacerbation of chronic obstructive pulmonary disease, or cellulitis, 84 of whom were treated in Hospital at Home and 130 in the acute care hospital. INTERVENTION: Treatment in a Hospital at Home model of care that substitutes for treatment in an acute care hospital. MEASUREMENTS: A 40-question survey measuring nine domains of care for patients and a 37-question survey measuring eight domains of care for family members. RESULTS: A higher proportion of patients were satisfied with treatment in Hospital at Home than with the acute care hospital in eight of nine domains, and this difference was statistically different in four domains. Hospital at Home patients were more likely than acute hospital patients to be satisfied with their physician (adjusted odds ratio (AOR) = 3.84, 95% confidence interval (CI) = 1.32-11.19), comfort and convenience of care (AOR = 6.52, 95% CI = 1.97-21.56), admission processes (AOR = 5.90, 95% CI = 2.21-5.76), and the overall care experience (AOR = 2.98, 95% CI = 1.08-8.21). Family members of patients treated in Hospital at Home were also more likely to be satisfied with multiple domains of care. CONCLUSION: Hospital at Home care was associated with greater satisfaction than acute hospital inpatient care for patients and their family members. These findings support further dissemination of the Hospital at Home care model.     

Empathy of intensive care nurses and critical care family needs assessment.

In this study we explored the relationship between the empathy of intensive care unit (ICU) nurses and their ability to assess accurately the perceived needs of family members of patients hospitalized in ICU settings. Thirty family needs were studied by using Molter's 1983 revision of the Critical Care Family Needs Inventory (CCFNI). Data consisted of 92 pairs of CCFNI responses obtained from 92 family members of ICU patients and 60 ICU nurses providing direct care for these patients. Multiple regression analysis was performed to determine the extent to which empathy and nursing experience contribute to accurate assessment of the needs of ICU family members. The more emphatic ICU nurses were, the greater their ability to assess ICU family members' needs accurately on six of the needs studied (p less than or equal to 0.05). Length of nursing experience negatively affected the nurse's ability to assess three of the ICU family members' needs accurately (p less than 0.05).     

Intensive care unit patient follow-up. Mortality, functional status, and return to work at six months

Six months after hospital discharge, we followed up 1545 patients who had received care in the general medical-surgical intensive care unit (ICU) of a tertiary care hospital. Vital status could not be ascertained for 200 of these patients. Of the 1345 former ICU patients for whom a determination of vital status could be made, 1261 (94%) were alive and 84 (6%) had died. Of those known to be living, 887 (70%) responded to a questionnaire regarding employment, functional, and social status. A large proportion of survivors less than 40 years of age had returned to work. Younger patients admitted to the hospital for elective surgery reported as much compromise of physical and psychological activity as did older patients admitted for emergency reasons. Older survivors reported an increase of interaction with family members and a decrease of social interaction with those other than family.     

Exploring positive aspects of caregiving in family caregivers of adult ICU survivors from ICU to four months post-ICU discharge

Background: Despite growing attention to the positive meaning from ICU survivorship, little is known about positive experience among family caregivers of ICU survivors.Objectives: To explore positive aspects of caregiving in family caregivers from patients’ ICU admission to 4-month post-ICU discharge.Methods: A secondary analysis of data from 47 family caregivers of ICU patients who self-reported the measure, Positive Aspects of Caregiving (PAC, 11-item, score range 11–55).Results: Family caregivers rated their experience as positive overall across the time points (mean 42.42–44.95). Trends of higher mean PAC scores were observed in caregivers who were older than 50 years of age, parent or sibling of patients, not working, had religious background or preference, and had no financial difficulty. Better social support and psychological responses were associated with PAC.Conclusion: In our sample, family caregivers of ICU survivors rated their caregiving experience as positive during the ICU and post-ICU periods.     

Emergency department experience with sudden death: a survey of survivors

Sudden death in the emergency department occurs frequently. Intervention by ED support staff may have a significant impact on the survivor's grief response. This study was undertaken to assess sudden death survivors' perceptions and satisfaction with their ED experience, as well as to identify potential weaknesses in their management. Family members of 66 patients who died in the ED from January 1980 to March 1985 were surveyed by telephone interview regarding the care they, as survivors, received while in the ED. Forty-seven of 66 (71%) were satisfied, 19 of 66 (29%) believed that their family received average or worse than average care. Thirty-seven of 66 (56%) survivors viewed the deceased in the ED; five regretted this. Twenty-nine survivors did not view; seven (24%) had regrets. Participants were questioned about attitudes expressed by the ED staff. Most responses were favorable, but a significant number thought the staff cold, unsympathetic, and not reassuring. Areas of apparent survivor dissatisfaction are discussed.     

Nursing home residents covered by Medicare risk contracts: early findings from the EverCare evaluation project

OBJECTIVES: To compare the characteristics of a sample of EverCare nursing home residents with two control groups: one composed of other residents in the same homes and another made up of residents in matched nursing homes. To compare levels of unmet need, satisfaction with medical care, and the use of advance directives. DESIGN: Quasi-experimental design using two control groups to minimize selection effects. Information collected by in-person surveys of nursing home residents and telephone surveys of proxies and family members. SETTING: Nursing homes affiliated with EverCare and matched control homes. PARTICIPANTS: Nursing home residents and their family members. MEASUREMENTS: Questionnaire addressing function (activities of daily living (ADLs)), unmet care needs, pain, use of advance directives, satisfaction, and caregiver burden. RESULTS: In general, the experimental and control groups were similar, but the EverCare sample had more dementia and less ADL disability. Family members in the EverCare sample expressed greater satisfaction with several aspects of the medical care they received than did controls. Satisfaction of residents in the EverCare sample was more comparable with that of controls. There was no difference in experience with advance directives between EverCare and control groups. CONCLUSIONS: EverCare appears to be a model of managed care worth tracking. It is producing care that is at least comparable with what is available in the fee-for-service environment, with evidence that families seem to appreciate the added attention. There is some suggestion that it has enrolled a less disabled but more demented population. Pending results on the effects of this care on hospitalization and emergency care should shed useful light.     

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.     

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   

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.     

Does a year make a difference? Changes in physician satisfaction and perception in an increasingly capitated environment.

BACKGROUND: Although capitation has become an increasingly common method of payment for heath care, little is known about changes in physician satisfaction as they become more experienced working in a capitated environment. METHODS: We surveyed the members of a physician hospital organization at an urban teaching hospital in the summers of 1996 and 1997. In 1996, fully capitated contracts covered <5% of patients under 65 years of age, but that figure increased to nearly 25% by 1997. We assessed physicians' satisfaction with their practice, compared satisfaction under fee-for-service and capitated payment, and evaluated ethical issues related to capitation. RESULTS: In 1996, we surveyed 587 physicians with direct patient care responsibilities, of whom 62% responded; 51% of 520 physicians responded in 1997. Overall satisfaction was 57% in 1996 and 71% in 1997. Among physicians who responded in both years, overall satisfaction was unchanged, but increases in satisfaction were noted for patient load (an increase of 0.5 points on a five-point scale, P <0.01), time to discuss patient needs (an increase of 0.3 points, P <0.01), and helpfulness of care coordination (an increase of 0.5 points, P = 0.02). In a direct comparison between fee-for-service and capitation, physicians were more satisfied with both methods of payment in 1997 than they were in 1996, but they were much more satisfied with fee-for-service in both years. For many individual indicators, the difference in satisfaction between fee-for-service and capitation increased between 1996 and 1997. CONCLUSION: When introduced to capitation, physicians had strong negative perceptions about it. After a year's experience, satisfaction with capitation improved, but perceived differences between capitation and fee-for-service grew even larger. Thus, physicians have serious concerns about capitation that may not be alleviated by experience with it.     

Satisfaction with methods of spanish interpretation in an ambulatory care clinic

OBJECTIVE: To describe the utilization of various methods of language interpretation by Spanish-speaking patients in an academic medical clinic and to determine patients' and physicians' satisfaction with these methods. METHODS: Survey administered to medical residents and Spanish-speaking patients asking about their experience and satisfaction with various methods of language interpretation. MAIN RESULTS: Both patients and residents had the highest level of satisfaction for professional interpreters (92.4% vs 96.1% reporting somewhat or very satisfactory, p =.17). In contrast, patients were significantly more satisfied than residents with using family members and friends (85.1% vs 60.8%, p <.01). Physicians and patients agreed that accuracy, accessibility, and respect for confidentiality were highly important characteristics of interpreters (>90% of both groups reporting somewhat or very important). However, patients were more concerned than residents about the ability of the interpreter to assist them after the physician visit (94% vs 45.1%, p < 0.01). CONCLUSIONS: Using family members and friends as interpreters for Spanish-speaking patients should be more seriously considered; however, in order to optimize patient satisfaction, differences between patients and providers should be taken into account when using interpretation in medical settings.     

Quality Improvement in End-of-Life Critical Care

Patients, clinicians and policy makers are increasingly interested in measuring and improving the quality of health care at the end of life. The intensive care unit (ICU) is characterized by high mortality and frequent use of life-sustaining treatments, making critical care a natural target for these efforts. Indeed, multiple local and regional quality improvement efforts now specifically target the dying experience for ICU patients, patients at risk for ICU admission, and their families. These activities either target ICU caregivers through educational programs and quality incentives, or target patients and their families directly through palliative care and efforts to improve decisions around the end of life. Although these initiatives hold great promise, they also face inherent challenges-it is difficult to measure the quality of end-of-life care, we lack practical targets for affecting quality, and uncertain political climates can often preclude serious discussions about end-of-life care. Moreover, these programs may lead to unintended consequences, potentially negatively impacting the very care they seek to improve. Future innovations surrounding how we measure the quality of end-of-life care and paradigm shifts in the way we think about ICU quality may help us to fully realize the goal of improving the dying process for ICU patients.     

Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death

BACKGROUND: Efforts to improve communication between physicians and dying patients have been unsuccessful, and guidelines for improving patient-physician communication about end-of-life care are based primarily on expert opinion. This study assessed which aspects of communication between patients and physicians are important in end-of-life care. METHODS: Twenty focus groups were held with 137 individuals, including patients with chronic and terminal illnesses, family members, health care professionals from hospice or acute care settings, and physicians with expertise in end-of-life care. Focus group analyses determined domains of physician skill at end-of-life care. Communication with patients was identified as one of the most important domains. Analyses of components important in communicating with dying patients and their families were performed. RESULTS: The following 6 areas were of central importance in communicating with dying patients: talking with patients in an honest and straightforward way, being willing to talk about dying, giving bad news in a sensitive way, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death. Within these components, subthemes emerged that provide guidelines for physicians and educators. Dying patients also identified the need to achieve a balance between being honest and straightforward and not discouraging hope. CONCLUSIONS: Several areas emerged for physicians to focus their attention on when communicating with dying patients. These findings provide guidance in how to improve this communication. They also highlight the need to approach communication about end-of-life care as a spectrum that requires attention from the time of a terminal diagnosis through death.     

Doctor discontent. A comparison of physician satisfaction in different delivery system settings, 1986 and 1997

OBJECTIVE: To examine the differences in physician satisfaction associated with open- versus closed-model practice settings and to evaluate changes in physician satisfaction between 1986 and 1997. Open-model practices refer to those in which physicians accept patients from multiple health plans and insurers (i.e., do not have an exclusive arrangement with any single health plan). Closed-model practices refer to those wherein physicians have an exclusive relationship with a single health plan (i.e., staff- or group-model HMO). DESIGN: Two cross-sectional surveys of physicians; one conducted in 1986 (Medical Outcomes Study) and one conducted in 1997 (Study of Primary Care Performance in Massachusetts). SETTING: Primary care practices in Massachusetts. PARTICIPANTS: General internists and family practitioners in Massachusetts. MEASUREMENTS: Seven measures of physician satisfaction, including satisfaction with quality of care, the potential to achieve professional goals, time spent with individual patients, total earnings from practice, degree of personal autonomy, leisure time, and incentives for high quality. RESULTS: Physicians in open- versus closed-model practices differed significantly in several aspects of their professional satisfaction. In 1997, open-model physicians were less satisfied than closed-model physicians with their total earnings, leisure time, and incentives for high quality. Open-model physicians reported significantly more difficulty with authorization procedures and reported more denials for care. Overall, physicians in 1997 were less satisfied in every aspect of their professional life than 1986 physicians. Differences were significant in three areas: time spent with individual patients, autonomy, and leisure time (P < or =.05). Among open-model physicians, satisfaction with autonomy and time with individual patients were significantly lower in 1997 than 1986 (P < or =.01). Among closed-model physicians, satisfaction with total earnings and with potential to achieve professional goals were significantly lower in 1997 than in 1986 (P < or =.01). CONCLUSIONS: This study finds that the state of physician satisfaction in Massachusetts is extremely low, with the majority of physicians dissatisfied with the amount of time they have with individual patients, their leisure time, and their incentives for high quality. Satisfaction with most areas of practice declined significantly between 1986 and 1997. Open-model physicians were less satisfied than closed-model physicians in most aspects of practices.     

Dying right in theory and practice. What do we really know of terminal care?

Despite the widely held belief that hospices treat dying patients differently than conventional hospitals do, few systematic comparisons exist. We reviewed medical charts to study the terminal care practice at one hospital and two inpatient hospices. As expected, hospital patients had more diagnostic tests and higher laboratory charges than patients in either hospice did. Yet physicians' notes about patients' families or nonmedical aspects of illness were infrequent at all three institutions. Furthermore, analgesic use and the frequency of nurses' notes about nonmedical or family issues differed between hospices: sometimes one hospice, sometimes the other, resembled the hospital closely. Hence, some common assumptions about hospice care appear inaccurate. We believe that health professionals who attend dying patients--whether in hospitals or hospices--have an obligation to examine their terminal care practices critically and to develop standards appropriate for their institutions.