Family Decision-Making to Withdraw Life-Sustaining Treatments From Hospitalized Patients

Tilden, Virginia P.; Tolle, Susan W.; Nelson, Christine A.; Fields, J. Matthew

doi:10.1097/00006199-200103000-00006

Cited by 215 publications

(179 citation statements)

References 40 publications

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“…The prevalences of posttraumatic stress and mean IES score in our sample are comparable to those of U.S., French, and British studies of bereaved and nonbereaved family members. [3][4][5] Yet, the prevalence of complicated grief in our study (23%) was much greater than prevalence in the study of Siegel et al (5%), 6 even when we used a more conservative ICG cutoff. Though we used different instruments to measure complicated grief (the original ICG, 19,20 versus the ICG-Revised 23 ), it seems unlikely that this fully explains the discrepant estimates, suggesting true differences in prevalence between our studies.…”

Section: Discussioncontrasting

confidence: 81%

“…For example, in Tilden et al's study, bereaved family members who decided to withdraw life-sustaining treatments in the absence of an advance directive were more likely to have symptoms of posttraumatic stress 1-2 months later, but not at 6 months. 5 Also, many risk factors for complicated grief, such as separation anxiety in childhood and dependency, 29,30 are independent of the ICU experience. For now, our results suggest that family members of ICU patients should be assessed for posttraumatic stress and complicated grief even if they did not exhibit anxiety and depression during the patients' ICU stay.…”

Section: Discussionmentioning

confidence: 99%

“…3 In the USA, Tilden et al found that both oral and written advance directives decreased family members' risk of posttraumatic stress. 5 In our recent study of family members of ICU patients, we found that those who preferred to play a passive role in decision-making about their relative's care were at greater risk for both anxiety and depression. 7 The relationship between relatives' self-stated role preferences in the ICU and posttraumatic stress and complicated grief has not been investigated.…”

Section: Introductionmentioning

confidence: 93%

“…To measure posttraumatic stress symptoms, we used the Impact of Event Scale (IES), a valid and reliable scale that has been used successfully in family members of ICU patients. [3][4][5][14][15][16] To assess for complicated grief, we used the Inventory of Complicated Grief (ICG) to distinguish between complicated bereavement and normal bereavement. [17][18][19] Analyses First, we converted scores on the HADS subscales, IES, and ICG into dichotomous variables.…”

Section: Study Procedures and Measuresmentioning

confidence: 99%

“…2 After patient discharge or death, family members develop posttraumatic stress related to the ICU experience, and bereaved family members are at risk for complicated grief. [3][4][5][6] When Siegel et al surveyed U.S. family members within 1 year of their relative's death, 34% met criteria for at least one psychiatric illness and 5% had complicated grief disorder. 6 Research to date has measured family members' psychiatric symptoms either during or after the patients' ICU stay, but it is unclear whether family members with anxiety and depression in the ICU are the same family members who later develop posttraumatic stress and complicated grief.…”

Section: Introductionmentioning

confidence: 99%

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Posttraumatic Stress and Complicated Grief in Family Members of Patients in the Intensive Care Unit

et al. 2008

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BACKGROUND:Family members of patients in intensive care units (ICUs) are at risk for mental health morbidity both during and after a patient's ICU stay. OBJECTIVES:To determine prevalences of and factors associated with anxiety, depression, posttraumatic stress and complicated grief in family members of ICU patients.DESIGN: Prospective, longitudinal cohort study. PARTICIPANTS: Fifty family members of patients inICUs at a large university hospital participated. MEASUREMENTS: We used the Control PreferencesScale to determine participants' role preferences for surrogate decision-making. We used the Hospital Anxiety and Depression Scale, Impact of Event Scale, and Inventory of Complicated Grief to measure anxiety and depression (at enrollment, 1 month, 6 months), posttraumatic stress (6 months), and complicated grief (6 months). RESULTS:We interviewed all 50 participants at enrollment, 39 (78%) at 1 month, and 34 (68%) at 6 months. At the three time points, anxiety was present in 42% (95% CI, 29-56%), 21% (95% CI, 10-35%), and 15% (95% CI, 6-29%) of participants. Depression was present in 16% (95% CI, 8-28%), 8% (95% CI, 2-19%), and 6% (95% CI, 1-18%). At 6 months, 35% (95% CI, 21-52%) of participants had posttraumatic stress. Of the 38% who were bereaved, 46% (95% CI, 22-71%) had complicated grief. Posttraumatic stress was not more common in bereaved than nonbereaved participants, and neither posttraumatic stress nor complicated grief was associated with decision-making role preference or with anxiety or depression during the patient's ICU stay.CONCLUSIONS: Symptoms of anxiety and depression diminished over time, but both bereaved and nonbereaved participants had high rates of posttraumatic stress and complicated grief. Family members should be assessed for posttraumatic stress and complicated grief.

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Section: Discussioncontrasting

confidence: 81%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 93%

Section: Study Procedures and Measuresmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Posttraumatic Stress and Complicated Grief in Family Members of Patients in the Intensive Care Unit

et al. 2008

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Improvements in Advance Care Planning in the Veterans Affairs System

Pearlman¹,

Starks²,

Cain³

et al. 2005

Arch Intern Med

108

154

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Toward Shared Decision Making at the End of Life in Intensive Care Units

et al. 2007

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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 ␤, .3; P =.02). Higher levels of shared decision making were associated with greater family satisfaction with communication (partial correlation coefficient, 0.15; standardized ␤, .09; P=.03). Conclusions: Shared decision making about end-oflife 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.

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Family Decision-Making to Withdraw Life-Sustaining Treatments From Hospitalized Patients

Abstract: Findings add compelling evidence for the power of advance directives, whether written or verbal, to reduce the stress associated with family decision-making.

Cited by 215 publications

References 40 publications

Posttraumatic Stress and Complicated Grief in Family Members of Patients in the Intensive Care Unit

Posttraumatic Stress and Complicated Grief in Family Members of Patients in the Intensive Care Unit

Improvements in Advance Care Planning in the Veterans Affairs System

Toward Shared Decision Making at the End of Life in Intensive Care Units

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