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      Beyond Pain: Nurses’ Assessment of Patient Suffering, Dignity, and Dying in the Intensive Care Unit

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          Abstract

          Context

          Deaths in the intensive care unit (ICU) are increasingly common in the U.S., yet little is known about patients’ experiences at the end of life in the ICU.

          Objectives

          The objective of this study was to determine nurse assessment of symptoms experienced, and care received by ICU patients in their final week, and their associations with nurse-perceived suffering and dignity.

          Methods

          From September 2015 to March 2017, nurses who cared for 200 ICU patients who died were interviewed about physical and psychosocial dimensions of patients’ experiences. Medical chart abstraction was used to document baseline patient characteristics and care.

          Results

          The patient sample was 61% males, 70.2% whites, and on average 66.9 (SD 15.1) years old. Nurses reported that 40.9% of patients suffered severely and 33.1% experienced severe loss of dignity. The most common symptoms perceived to contribute to suffering and loss of dignity included trouble breathing (44.0%), edema (41.9%), and loss of control of limbs (36.1%). Most ( n = 9) remained significantly ( P < 0.05) associated with suffering, after adjusting for physical pain, including fever/chills, fatigue, and edema. Most patients received vasopressors and mechanical ventilation. Renal replacement therapy was significantly (<0.05) associated with severe suffering (adjusted odds ratio [AOR] 2.53) and loss of dignity (AOR 3.15). Use of feeding tube was associated with severe loss of dignity (AOR 3.12).

          Conclusion

          Dying ICU patients are perceived by nurses to experience extreme indignities and suffer beyond physical pain. Attention to symptoms such as dyspnea and edema may improve the quality of death in the ICU.

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          Most cited references37

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          Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health.

          To determine whether the place of death for patients with cancer is associated with patients' quality of life (QoL) at the end of life (EOL) and psychiatric disorders in bereaved caregivers. Prospective, longitudinal, multisite study of patients with advanced cancer and their caregivers (n = 342 dyads). Patients were followed from enrollment to death, a median of 4.5 months later. Patients' QoL at the EOL was assessed by caregiver report within 2 weeks of death. Bereaved caregivers' mental health was assessed at baseline and 6 months after loss with the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, and the Prolonged Grief Disorder interview. In adjusted analyses, patients with cancer who died in an intensive care unit (ICU) or hospital experienced more physical and emotional distress and worse QoL at the EOL (all P ≤ .03), compared with patients who died at home with hospice. ICU deaths were associated with a heightened risk for posttraumatic stress disorder, compared with home hospice deaths (21.1% [four of 19] v 4.4% [six of 137]; adjusted odds ratio [AOR], 5.00; 95% CI, 1.26 to 19.91; P = .02), after adjustment for caregivers' preexisting psychiatric illnesses. Similarly, hospital deaths were associated with a heightened risk for prolonged grief disorder (21.6% [eight of 37] v 5.2% [four of 77], AOR, 8.83; 95% CI, 1.51 to 51.77; P = .02), compared with home hospice deaths. Patients with cancer who die in a hospital or ICU have worse QoL compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychiatric illness. Interventions aimed at decreasing terminal hospitalizations or increasing hospice utilization may enhance patients' QoL at the EOL and minimize bereavement-related distress.
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            End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences.

            Physicians have an ethical obligation to honor patients' values for care, including at the end of life (EOL). We sought to evaluate factors that help patients to receive care consistent with their preferences. This was a longitudinal multi-institutional cohort study. We measured baseline preferences for life-extending versus symptom-directed care and actual EOL care received in 325 patients with advanced cancer. We also measured associated sociodemographic, health, and communication characteristics, including EOL discussions between patients and physicians. Preferences were assessed a median of 125 days before death. Overall, 68% of patients (220 of 325 patients) received EOL care consistent with baseline preferences. The proportion was slightly higher among patients who recognized they were terminally ill (74%, 90 of 121 patients; P = .05). Patients who recognized their terminal illness were more likely to prefer symptom-directed care (83%, 100 of 121 patients; v 66%, 127 of 191 patients; P = .003). However, some patients who were aware they were terminally ill wished to receive life-extending care (17%, 21 of 121 patients). Patients who reported having discussed their wishes for EOL care with a physician (39%, 125 of 322 patients) were more likely to receive care that was consistent with their preferences, both in the full sample (odds ratio [OR] = 2.26; P < .0001) and among patients who were aware they were terminally ill (OR = 3.94; P = .0005). Among patients who received no life-extending measures, physical distress was lower (mean score, 3.1 v 4.1; P = .03) among patients for whom such care was consistent with preferences. Patients with cancer are more likely to receive EOL care that is consistent with their preferences when they have had the opportunity to discuss their wishes for EOL care with a physician.
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              Use of intensive care at the end of life in the United States: an epidemiologic study.

              Despite concern over the appropriateness and quality of care provided in an intensive care unit (ICU) at the end of life, the number of Americans who receive ICU care at the end of life is unknown. We sought to describe the use of ICU care at the end of life in the United States using hospital discharge data from 1999 for six states and the National Death Index. Retrospective analysis of administrative data to calculate age-specific rates of hospitalization with and without ICU use at the end of life, to generate national estimates of end-of-life hospital and ICU use, and to characterize age-specific case mix of ICU decedents. All nonfederal hospitals in the states of Florida, Massachusetts, New Jersey, New York, Virginia, and Washington. All inpatients in nonfederal hospitals in the six states in 1999. None. We found that there were 552,157 deaths in the six states in 1999, of which 38.3% occurred in hospital and 22.4% occurred after ICU admission. Using these data to project nationwide estimates, 540,000 people die after ICU admission each year. The age-specific rate of ICU use at the end of life was highest for infants (43%), ranged from 18% to 26% among older children and adults, and fell to 14% for those >85 yrs. Average length of stay and costs were 12.9 days and $24,541 for terminal ICU hospitalizations and 8.9 days and $8,548 for non-ICU terminal hospitalizations. One in five Americans die using ICU services. The doubling of persons over the age of 65 yrs by 2030 will require a system-wide expansion in ICU care for dying patients unless the healthcare system pursues rationing, more effective advanced care planning, and augmented capacity to care for dying patients in other settings.
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                Author and article information

                Journal
                8605836
                4849
                J Pain Symptom Manage
                J Pain Symptom Manage
                Journal of pain and symptom management
                0885-3924
                1873-6513
                30 May 2018
                17 February 2018
                June 2018
                07 June 2018
                : 55
                : 6
                : 1591-1598.e1
                Affiliations
                Center for Research on End-Of-Life Care (A.S., L.L., D.B., D.O., R.M., P.K.M., H.G.P.), Weill Cornell Medicine, New York, New York; Department of Medicine, Weill Cornell Medicine (A.S., L.L., D.B., R.M., P.K.M., H.G.P.), New York, New York; Center for Surgery and Public Health (Z.C.), Brigham and Women’s Hospital, Boston, Massachusetts; Department of Nursing, New York Presbyterian Hospital (J.H.), New York, New York; and Department of Radiology (P.K.M.), Weill Cornell Medicine, New York, New York, USA
                Author notes
                Address correspondence to: Holly G. Prigerson, PhD, Department of Medicine, Weill Cornell Medicine, Center for Research on End-of-Life Care, 525 East 68th Street, Box 141, New York, NY 10065. hgp2001@ 123456med.cornell.edu

                Amandu Su and Lindsay Lief share first authorship.

                Article
                NIHMS971505
                10.1016/j.jpainsymman.2018.02.005
                5991087
                29458082
                37793fc6-bb41-467e-b562-112dc95dc73e

                This is an open access article under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/).

                History
                Categories
                Article

                end-of-life care,intensive care unit,quality of death,suffering,dignity

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