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.     

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).     

Patients' perceptions of the health care received in an emergency department

OBJECTIVE: The purpose of this study was to obtain information about how patients perceive the health care delivered in an emergency department. SETTING: Patients who visited the ED at a Swedish university hospital during the daytime on Monday through Friday during a four-week period and were expected to be discharged from the ED after their visit were included in the study. Other criteria for participation were the patients' mental and physical abilities to fill out a questionnaire. STUDY DESIGN: One hundred eighty-seven patients (110 women and 77 men) classified as orthopedic, gynecologic, internal medical, surgical, or neurologic patients evaluated their perception of the health care delivered in the ED by filling out a questionnaire after arrival and before discharge. MEASUREMENTS AND MAIN RESULTS: The perceptions of the care received were on average quite positive. This was supported indirectly by the fact that scored pain, strength, calmness, and despair changed in a positive direction during the ED stay. However, a pattern of varying satisfaction appeared when the patients were dichotomized into three groups according to how they had perceived their first information on arrival. Fourteen percent of the patients had received exact information, 20% were partly informed, and 66% had received no information about what was going to happen to them next. Those who received the most information at the time of arrival at the ED were more satisfied with the general treatment (P less than .05), respect (P less than .01), and attitude (P less than .05) later shown by the staff as well as with the information given later (P less than .05) than were the patients who had received no information at all on arrival. The general evaluation of the ED was more positively (P less than .001) scored by the patients who received the most information (they were more satisfied) compared with the other two groups. CONCLUSION: The information given to patients on arrival at the ED may be important to a positive perception of the care given during their stay.     

Critical care nurse perceptions of family needs

Family needs research has for the most part focused on the families' perceptions when a significant other is admitted to the intensive care unit. We examined critical care nurse perceptions of family needs. The questionnaire "Needs of Families of Critically Ill Patients" was given to 126 intensive care unit nurses. The tool was an adaptation of Molter's questionnaire "Needs of Relatives of Critically Ill Patients." The revised tool examined nurse perception of family needs, perception of time available to meet the needs in daily practice, and the best professional to meet the family need if the need was identified as best met by someone other than the nurse. The majority of the nurses perceived family needs as important or very important, and 85% of the nurses indicated that they were able to meet family needs and had the time to do so. Cognitive family were ranked higher than psychologic or personal and physical needs. Nurses from the four intensive care units ranked family needs significantly differently, a result that may be influenced by differing patient acuity and patient length of stay on individual units. Nurses' perceptions of family needs were influenced by units worked, length of time practicing in critical care, educational preparation, and length of time in nursing.     

Patients' and providers' perceptions of asthma and asthma care: a qualitative study

Background: Differences in patients' and providers' perceptions of asthma and asthma care can create barriers to successful treatment. The primary goal of this qualitative study was to further explore patient and provider perceptions of asthma and asthma care as part of a larger Asthma Comparative Effectiveness Study. Methods: Focus groups held every 6 months for 3 years were designed to have a mix of both patients and providers allowing for unique understanding around asthma care. Results: The discussion centered on goal setting, asthma action plans and prevention strategies for asthma exacerbations. Three overarching themes, with a variety of subthemes, emerged as the main findings of this study. The three main themes were Cost/Economic Barriers/Process, Self-Governance/Adherence and Education. Conclusions: These themes indicated a strong need for patient educational interventions around asthma as well as education for providers around cost, insurance coverage and patient-centered communication. Specifically, education on learning to use inhalers properly, avoiding triggers and understanding the importance of a controller medication will benefit patients in the long-term management of asthma.     

Patients' perceptions of food-induced asthma

Background: The influence of diet in asthma control remains unclear. However, there is likely to be a wide gap between patient perceptions and the probable actual role. Some 20–60% of people with asthma report food as a trigger factor while approximately 2.5% react to double-blind placebo-controlled challenges. The aim of this study was to determine: the frequency, type and sources of dietary advice being offered to patients, the prevalence of dietary modification, whether dietary changes were perceived to be of benefit and the type and sources of food/beverage reactions that people perceive they have experienced.
Method: A self-administered 'food and asthma' questionnaire was developed and mailed to 156 consecutive Alfred Hospital Asthma and Allergy Clinic patients registered on a computer database.
Results: The completed questionnaire response rate was 86.5%. Dietary advice had been offered to 47% of respondents while 61% had tried to modify their diet. Dietary restriction was the most common dietary modification. Where dietary restriction had occurred 79% of respondents perceived that this had improved their asthma control. A doctor was the most common source of dietary advice. Seventy-three per cent reported that food induced asthma.
Conclusion: We confirmed that patients with asthma perceived diet to be important in their asthma control and that dietary modification is common despite its lack of objective basis. The influence of diet and asthma requires more research, evaluation and clinical attention.     

Comparison of perceived needs of family members between registered nurses and family members of critically ill patients in intensive care and neonatal intensive care units

Using the Norris and Grove (1986) questionnaire of perceived needs of families of critically ill patients, 11 registered nurses working in the neonatal intensive care unit and 19 registered nurses working in the intensive care unit of two mid-northern community hospitals provided their perceptions of family needs. Their responses were compared with responses of family members of patients in the intensive care unit (n = 25) and the (n = 24). Results suggest that regardless of unit, registered nurses' perceptions of family needs are congruent. Family members collectively and by unit ranked their needs consistently higher and in some areas differently than did the registered nurses.     

Patients' perceptions of self-help groups in achalasia

The possible role of a self-help group was investigated among 126 patients with achalasia. Forty-one patients initially expressed an interest, but only 19 were willing to complete a questionnaire about their role in such a group. Only 14 patients were willing to be identified by other sufferers, and only 8 were ready to take an active part in organising meetings. Although patients with achalasia want more information about their disease, few wish to join a self-help group.     

Patients' perceptions of blood transfusion risks in Karachi, Pakistan.

OBJECTIVE: To evaluate the understanding of and attitudes toward risks of blood transfusions among transfusion recipients in Karachi. METHODS: One hundred forty-one transfusion recipients from 13 major Karachi hospitals were interviewed. Indications for transfusion were obtained by reviewing the patients' medical records. RESULTS: The most common indications for transfusion were surgical complications (n = 77, 55%), anemia (n = 34, 24%), and generalized weakness (n = 15, 11%). Most recipients (n = 103, 80%) had never heard of viral hepatitis, and 44 (31%) had never heard of acquired immunodeficiency syndrome (AIDS). Ninety-four recipients (66%) believed that generalized weakness was a valid indication for blood transfusion. Sixty-nine recipients (49%) were not willing to pay an increased price for blood that was screened for blood-borne pathogens. CONCLUSIONS: Blood recipients in Karachi are unaware of the risks of transfusions, and the reasons given by the ordering physician for many of the transfusions were not consistent with international guidelines. Steps to educate the public about the risks of transfusions and practitioners about the indications for transfusion could prevent blood-borne virus transmission in Karachi.     

Discrepancies between perceptions by physicians and nursing staff of intensive care unit end-of-life decisions

Several studies have pointed out ethical shortcomings in the decision-making process for withholding or withdrawing life-supporting treatments. We conducted a study to evaluate the perceptions of all caregivers involved in this process in the intensive care unit. A closed-ended questionnaire was completed by 3,156 nursing staff members and 521 physicians from 133 French intensive care units (participation rate, 42%). Decision-making processes were perceived as satisfactory by 73% of physicians and by only 33% of the nursing staff. More than 90% of caregivers believed that decision-making should be collaborative, but 50% of physicians and only 27% of nursing staff members believed that the nursing staff was actually involved (p < 0.001). Fear of litigation was a reason given by physicians for modifying information given to competent patients, families, and nursing staff. Perceptions by nursing staff may be a reliable indicator of the quality of medical decision-making processes and may serve as a simple and effective tool for evaluating everyday practice. Recommendations and legislation may help to build consensus and avoid conflicts among caregivers at each step of the decision-making process.     

Cardiac surgery: moving away from intensive care.

OBJECTIVE--To evaluate outcome in patients managed outside an intensive care unit after open heart surgery. BACKGROUND--The high cost of cardiac surgery is mainly due to the needs of traditional postoperative care. The requirements for intensive care and treatment has decreased with improvements in techniques of cardiac surgery and anaesthesia. In this setting the need to continue to depend on intensive care units for the recovery of cardiac surgical patients is questionable on clinical and economic grounds. DESIGN--Postoperative outcome in 245 patients over a four month period was studied prospectively. PATIENTS--Mean age of the patients was 63.2 years. They underwent a wide variety of operative procedures. Ninety percent of them recovered in a dedicated three bed cardiac surgical recovery area where the management protocol led to rapid extubation and step down in dependency care. RESULTS--Median time for ventilatory support was 90 minutes after transfer to the area. Only five patients were subsequently admitted to the general intensive care unit for prolonged respiratory and cardiac support. Ten patients were electively admitted to the general intensive care unit. Two deaths occurred in hospital in this group (0.8%). Four patients were ventilated for 24 hours in the recovery area itself and made an uncomplicated recovery. CONCLUSION--This study confirms that over 90% of patients undergoing cardiac surgery would recover safely and be treated effectively in a more economical area than intensive care.     

Missed opportunities during family conferences about end-of-life care in the intensive care unit

BACKGROUND: Improved communication with family members of critically ill patients can decrease the prolongation of dying in the intensive care unit (ICU), but few data exist to guide the conduct of this communication. OBJECTIVE: Our objective was to identify missed opportunities for physicians to provide support for or information to family during family conferences. METHODS: We identified ICU family conferences in four hospitals that included discussions about withdrawing life support or delivery of bad news. Fifty-one conferences were audiotaped, including 214 family members. Thirty-six physicians led the conferences and some physicians led more than one. We used qualitative methods to identify and categorize missed opportunities, defined as an occurrence when the physician had an opportunity to provide support or information to the family and did not. MAIN RESULTS: Fifteen family conferences (29%) had missed opportunities identified. These fell into three categories: opportunities to listen and respond to family; opportunities to acknowledge and address emotions; and opportunities to pursue key principles of medical ethics and palliative care, including exploration of patient preferences, explanation of surrogate decision making, and affirmation of nonabandonment. The most commonly missed opportunities were those to listen and respond, but examples from other categories suggest value in being aware of these opportunities. CONCLUSIONS: Identification of missed opportunities during ICU family conferences provides suggestions for improving communication during these conferences. Future studies are needed to demonstrate whether addressing these opportunities will improve quality of care.     

Bronchoscopy in intensive care.

Fiberoptic bronchoscopy has revolutionized the practice of modern pulmonary medicine. It is estimated that as many as 98% of all bronchoscopies are currently performed using the flexible instrument, and most bronchoscopists have never been trained in the technique of rigid bronchoscopy.     

Comprehensive management of post-transplant diabetes mellitus: from intensive care to home care.

Post-transplant diabetes mellitus (PTDM) is a common complication of solid organ and hematopoietic transplantation. This clinically oriented review article briefly summarizes the pathophysiology of PTDM, then presents a comprehensive clinical approach to diagnosis and therapy. Topics include the key clinical aspects of PTDM screening, diagnosis, and management during all phases following transplantation from the intensive care unit, to the inpatient ward, to the outpatient arena.