Randomized Trial of Communication Facilitators to Reduce Family Distress and Intensity of End-of-Life Care.
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ABSTRACT: Rationale
Communication with family of critically ill patients is often poor and associated with family distress.Objectives
To determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care.Methods
We conducted a randomized trial at two hospitals. Eligible patients had a predicted mortality greater than or equal to 30% and a surrogate decision maker. Facilitators supported communication between clinicians and families, adapted communication to family needs, and mediated conflict.Measurements and main results
Outcomes included depression, anxiety, and post-traumatic stress disorder (PTSD) among family 3 and 6 months after ICU and resource use. We identified 488 eligible patients and randomized 168. Of 352 eligible family members, 268 participated (76%). Family follow-up at 3 and 6 months ranged from 42 to 47%. The intervention was associated with decreased depressive symptoms at 6 months (P = 0.017), but there were no significant differences in psychological symptoms at 3 months or anxiety or PTSD at 6 months. The intervention was not associated with ICU mortality (25% control vs. 21% intervention; P = 0.615) but decreased ICU costs among all patients (per patient: $75,850 control, $51,060 intervention; P = 0.042) and particularly among decedents ($98,220 control, $22,690 intervention; P = 0.028). Among decedents, the intervention reduced ICU and hospital length of stay (28.5 vs. 7.7 d and 31.8 vs. 8.0 d, respectively; P < 0.001).Conclusions
Communication facilitators may be associated with decreased family depressive symptoms at 6 months, but we found no significant difference at 3 months or in anxiety or PTSD. The intervention reduced costs and length of stay, especially among decedents. This is the first study to find a reduction in intensity of end-of-life care with similar or improved family distress. Clinical trial registered with www.clinicaltrials.gov (NCT 00720200).
SUBMITTER: Curtis JR
PROVIDER: S-EPMC4731711 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivePatients with COPD consistently express a desire to discuss end-of-life care with clinicians, but these discussions rarely occur. We assessed whether an intervention using patient-specific feedback about preferences for discussing end-of-life care would improve the occurrence and quality of communication between patients with COPD and their clinicians.MethodsWe performed a cluster-randomized trial of clinicians and patients from the outpatient clinics at the Veterans Affairs Puget Sound Health Care System. Using self-reported questionnaires, we assessed patients' preferences for communication, life-sustaining therapy, and experiences at the end of life. The intervention clinicians and patients received a one-page patient-specific feedback form, based on questionnaire responses, to stimulate conversations. The control group completed questionnaires but did not receive feedback. Patient-reported occurrence and quality of end-of-life communication (QOC) were assessed within 2 weeks of a targeted visit. Intention-to-treat regression analyses were performed with generalized estimating equations to account for clustering of patients within clinicians.ResultsNinety-two clinicians contributed 376 patients. Patients in the intervention arm reported nearly a threefold higher rate of discussions about end-of-life care (unadjusted, 30% vs 11%; P < .001). Baseline end-of-life communication was poor (intervention group QOC score, 23.3; 95% CI, 19.9-26.8; control QOC score, 19.2; 95% CI, 15.9-22.4). Patients in the intervention arm reported higher-quality end-of-life communication that was statistically significant, although the overall improvement was small (Cohen effect size, 0.21).ConclusionsA one-page patient-specific feedback form about preferences for end-of-life care and communication improved the occurrence and quality of communication from patients' perspectives.Trial registryClinicalTrials.gov; No.: NCT00106080; URL: www.clinicaltrials.gov.
| S-EPMC3415164 | biostudies-literature
Project description:BackgroundMany studies have measured the intensity of end of life care. However, no summary of the measures used in the field is currently available.ObjectivesTo summarise features, characteristics of use and reported validity of measures used for evaluating intensity of end of life care.MethodsThis was a systematic review according to PRISMA guidelines. We performed a comprehensive literature search in Ovid Medline, Embase, The Cochrane Library of Systematic Reviews and reference lists published between 1990-2014. Two reviewers independently screened titles, abstracts, full texts and extracted data. Studies were eligible if they used a measure of end of life care intensity, defined as all quantifiable measures describing the type and intensity of medical care administered during the last year of life.ResultsA total of 58 of 1590 potentially eligible studies met our inclusion criteria and were included. The most commonly reported measures were hospitalizations (n = 44), intensive care unit admissions (n = 39) and chemotherapy use (n = 27). Studies measured intensity of care in different timeframes ranging from 48 hours to 12 months. The majority of studies were conducted in cancer patients (n = 31). Only 4 studies included information on validation of the measures used. None evaluated construct validity, while 3 studies considered criterion and 1 study reported both content and criterion validity.ConclusionsThis review provides a synthesis to aid in choosing intensity of end of life care measures based on their previous use but simultaneously highlights the crucial need for more validation studies and consensus in the field.
| S-EPMC4396980 | biostudies-literature
Project description:BACKGROUND:While disparities in end-of-life care have been well-documented, explanations for the persistence of disparities are less clear. This study sought to examine diverse perceptions of end-of-life care, especially regarding how medical professionals can better serve all populations. OBJECTIVE:To investigate similarities and differences in end-of-life care preferences, across racial and ethnic groups. DESIGN:This work consists of a qualitative study utilizing in-depth focus group discussions. SETTING/PARTICIPANTS:Six community-based focus groups were conducted with a total of 39 participants. Two groups were composed of African American participants, 2 had Latino participants, and 2 groups had white participants. RESULTS:Analysis produced 3 major themes: (1) clear, comprehensive, and culturally relevant provider-patient communication regarding serious illness; (2) provider characteristics and competency; and (3) health system supports and barriers. Although all groups had individuals who expressed a strong preference for direct communication, individuals varied within groups. All groups discussed concerns that the costs of care are high and that financial considerations are given more importance than high-quality care. Groups diverged in their focus on provider characteristics and feelings of marginalization. African American and Latino groups emphasized a desire to match characteristics with providers, and African American groups discussed that their marginalization in the health-care system requires hypervigilance to receive high-quality care. CONCLUSIONS:Improvements in care would come from acknowledging diversity within groups, provider demonstration of comfort and competence, more effective care coordination, and recruitment of providers who share similar characteristics with the communities they serve.
| S-EPMC6786269 | biostudies-literature
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| S-EPMC8559724 | biostudies-literature
Project description:Patients with advanced-stage cancer are receiving increasingly aggressive medical care near death, despite growing concerns that this reflects poor-quality care.To assess the association of aggressive end-of-life care with bereaved family members' perceptions of the quality of end-of-life care and patients' goal attainment.Interviews with 1146 family members of Medicare patients with advanced-stage lung or colorectal cancer in the Cancer Care Outcomes Research and Surveillance study (a multiregional, prospective, observational study) who died by the end of 2011 (median, 144.5 days after death; interquartile range, 85.0-551.0 days).Claims-based quality measures of aggressive end-of-life care (ie, intensive care unit [ICU] admission or repeated hospitalizations or emergency department visits during the last month of life; chemotherapy ?2 weeks of death; no hospice or ?3 days of hospice services; and deaths occurring in the hospital).Family member-reported quality rating of "excellent" for end-of-life care. Secondary outcomes included patients' goal attainment (ie, end-of-life care congruent with patients' wishes and location of death occurred in preferred place).Of 1146 patients with cancer (median age, 76.0 years [interquartile range, 65.0-87.0 years]; 55.8% male), bereaved family members reported excellent end-of-life care for 51.3%. Family members reported excellent end-of-life care more often for patients who received hospice care for longer than 3 days (58.8% [352/599]) than those who did not receive hospice care or received 3 or fewer days (43.1% [236/547]) (adjusted difference, 16.5 percentage points [95% CI, 10.7 to 22.4 percentage points]). In contrast, family members of patients admitted to an ICU within 30 days of death reported excellent end-of-life care less often (45.0% [68/151]) than those who were not admitted to an ICU within 30 days of death (52.3% [520/995]) (adjusted difference, -9.4 percentage points [95% CI, -18.2 to -0.6 percentage points]). Similarly, family members of patients who died in the hospital reported excellent end-of-life care less often (42.2% [194/460]) than those who did not die in the hospital (57.4% [394/686]) (adjusted difference, -17.0 percentage points [95% CI, -22.9 to -11.1 percentage points]). Family members of patients who did not receive hospice care or received 3 or fewer days were less likely to report that patients died in their preferred location (40.0% [152/380]) than those who received hospice care for longer than 3 days (72.8% [287/394]) (adjusted difference, -34.4 percentage points [95% CI, -41.7 to -27.0 percentage points]).Among family members of older patients with fee-for service Medicare who died of lung or colorectal cancer, earlier hospice enrollment, avoidance of ICU admissions within 30 days of death, and death occurring outside the hospital were associated with perceptions of better end-of-life care. These findings are supportive of advance care planning consistent with the preferences of patients.
| S-EPMC4919118 | biostudies-literature
Project description:The incidence and costs of critical illness are increasing in the United States at a time when there is a focus both on limiting the rising costs of healthcare and improving the quality of end-of-life care. More than 25% of healthcare costs are spent in the last year of life, and approximately 20% of deaths occur in the intensive care unit (ICU). Consequently, there has been speculation that end-of-life care in the ICU represents an important target for cost savings. It is unclear whether efforts to improve end-of-life care in the ICU could significantly reduce healthcare costs. Here, we summarize recent studies suggesting that important opportunities may exist to improve quality and reduce costs through two mechanisms: advance care planning for patients with life-limiting illness and use of time-limited trials of ICU care for critically ill patients. The goal of these approaches is to ensure patients receive the intensity of care that they would choose at the end of life, given the opportunity to make an informed decision. Although these mechanisms hold promise for increasing quality and reducing costs, there are few clearly described, effective methods to implement these mechanisms in routine clinical practice. We believe basic science in communication and decision making, implementation research, and demonstration projects are critically important if we are to translate these approaches into practice and, in so doing, provide high-quality and patient-centered care while limiting rising healthcare costs.
| S-EPMC3480521 | biostudies-other
Project description:BACKGROUND:The intensity of end-of-life care varies substantially both within and between areas. Differing practice patterns of individual physicians are likely influenced by their peers. OBJECTIVE:To assess whether intensity of end-of-life care previously provided by a physician's peers influences patterns of care at the end-of-life for that physician's patients. RESEARCH DESIGN:Observational study. SUBJECTS:A total of 185,947 fee-for-service Medicare enrollees with cancer who died during 2006-2010 who were treated by 26,383 physicians. MEASURES:Spending in the last month of life, >1 emergency room visit, >1 hospitalization, intensive care unit admission in the last month of life, chemotherapy within 2 weeks of death, no/late hospice, terminal hospitalization. RESULTS:Mean (SD) spending in the last month of life was $16,237 ($17,124). For each additional $1000 of spending for a peer physician's patients in the prior year, spending for the ego physician's patients was $83 higher (P<0.001). Among physicians with peers both in and out of their practice, more of the peer effect was explained by physicians outside of the practice ($72 increase for each $1000 increase by peer physicians' patients, P<0.001) than peer physicians in the practice ($27 for each $1000 increase by within-practice peer physicians' patients, P=0.01). Results were similar across the other measures of end-of-life care intensity. CONCLUSIONS:Physician's peers exert influence on the intensity of care delivered to that physician's patients at the end-of-life. Physician education efforts led by influential providers and provider organizations may have potential to improve the delivery of high-value end-of-life care.
| S-EPMC6522329 | biostudies-literature
Project description:ObjectiveTo examine whether regional practice patterns impact racial/ethnic differences in intensity of end-of-life care for cancer decedents.Data sourcesThe linked Surveillance, Epidemiology, and End Results (SEER)-Medicare database.Study designWe classified hospital referral regions (HRRs) based on mean 6-month end-of-life care expenditures, which represented regional practice patterns. Using hierarchical generalized linear models, we examined racial/ethnic differences in the intensity of end-of-life care across levels of HRR expenditures.Principal findingsThere was greater variation in intensity of end-of-life care among Hispanics, Asians, and whites in high-expenditure HRRs than in low-expenditure HRRs.ConclusionsLocal practice patterns may influence racial/ethnic differences in end-of-life care.
| S-EPMC6232508 | biostudies-literature
Project description:ImportanceThere is substantial institutional variability in the intensity of end-of-life care that is not explained by patient preferences. Hospital culture and institutional structures (eg, policies, practices, protocols, resources) might contribute to potentially nonbeneficial high-intensity life-sustaining treatments near the end of life.ObjectiveTo understand the role of hospital culture in the everyday dynamics of high-intensity end-of-life care.Design, setting, and participantsThis comparative ethnographic study was conducted at 3 academic hospitals in California and Washington that differed in end-of-life care intensity based on measures in the Dartmouth Atlas and included hospital-based clinicians, administrators, and leaders. Data were deductively and inductively analyzed using thematic analysis through an iterative coding process.Main outcome and measureInstitution-specific policies, practices, protocols, and resources and their role in the everyday dynamics of potentially nonbeneficial, high-intensity life-sustaining treatments.ResultsA total of 113 semistructured, in-depth interviews (66 women [58.4%]; 23 [20.4%] Asian, 1 [0.9%] Black, 5 [4.4%] Hispanic, 7 [6.2%] multiracial, and 70 [61.9%] White individuals) were conducted with inpatient-based clinicians and administrators between December 2018 and June 2022. Respondents at all hospitals described default tendencies to provide high-intensity treatments that they believed were universal in US hospitals. They also reported that proactive, concerted efforts among multiple care teams were required to deescalate high-intensity treatments. Efforts to deescalate were vulnerable to being undermined at multiple points during a patient's care trajectory by any individual or entity. Respondents described institution-specific policies, practices, protocols, and resources that engendered broadly held understandings of the importance of deescalating nonbeneficial life-sustaining treatments. Respondents at different hospitals reported different policies and practices that encouraged or discouraged deescalation. They described how these institutional structures contributed to the culture and everyday dynamics of end-of-life care at their institution.Conclusions and relevanceIn this qualitative study, clinicians, administrators, and leaders at the hospitals studied reported that they work in a hospital culture in which high-intensity end-of-life care constitutes a default trajectory. Institutional structures and hospital cultures shape the everyday dynamics by which clinicians may deescalate end-of-life patients from this trajectory. Individual behaviors or interactions may fail to mitigate potentially nonbeneficial high-intensity life-sustaining treatments if extant hospital culture or a lack of supportive policies and practices undermine individual efforts. Hospital cultures need to be considered when developing policies and interventions to decrease potentially nonbeneficial, high-intensity life-sustaining treatments.
| S-EPMC10318547 | biostudies-literature
Project description:BackgroundChildren with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type, socioeconomic status, and distance that the child lives from a tertiary hospital. We examined: 1) the prevalence of indicators of high intensity end-of-life care (e.g., hospital stays, intensive care unit [ICU] stays, death in ICU, use of cardiopulmonary resuscitation [CPR], use of mechanical ventilation) and 2) the association between demographic and diagnostic factors and each indicator for children with any life-threatening condition in Canada.MethodsWe conducted a population-based retrospective cohort study using linked health administrative data to examine care provided in the last 14, 30, and 90 days of life to children who died between 3 months and 19 years of age from January 1, 2008 to December 31, 2014 from any underlying life-threatening medical condition. Logistic regression was used to model the association between demographic and diagnostic variables and each indicator of high intensity end-of-life care except number of hospital days where negative binomial regression was used.ResultsAcross 2435 child decedents, the most common diagnoses included neurology (51.1%), oncology (38.0%), and congenital illness (35.9%), with 50.9% of children having diagnoses in three or more categories. In the last 30 days of life, 42.5% (n = 1035) of the children had an ICU stay and 36.1% (n = 880) died in ICU. Children with cancer had lower odds of an ICU stay (OR = 0.47; 95% CI = 0.36-0.62) and ICU death (OR = 0.37; 95%CI = 0.28-0.50) than children with any other diagnoses. Children with 3 or more diagnoses (vs. 1 diagnosis) had higher odds of > 1 hospital stay in the last 30 days of life (OR = 2.08; 95%CI = 1.29-3.35). Living > 400 km (vs < 50 km) from a tertiary pediatric hospital was associated with higher odds of multiple hospitalizations (OR = 2.09; 95%CI = 1.33-3.33).ConclusionHigh intensity end of life care is prevalent in children who die from life threatening conditions, particularly those with a non-cancer diagnosis. Further research is needed to understand and identify opportunities to enhance care across disease groups.
| S-EPMC10364373 | biostudies-literature