Effect of Palliative Care–Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial
Open accessAbstract
IMPORTANCE: Family caregivers of patients with chronic critical illness experience significant psychological distress. OBJECTIVE: To determine whether family informational and emotional support meetings led by palliative care clinicians improve family anxiety and depression. DESIGN, SETTING, AND PARTICIPANTS: A multicenter randomized clinical trial conducted from October 2010 through November 2014 in 4 medical intensive care units (ICUs). Adult patients (aged ≥21 years) requiring 7 days of mechanical ventilation were randomized and their family surrogate decision makers were enrolled in the study. Observers were blinded to group allocation for the measurement of the primary outcomes. INTERVENTIONS: At least 2 structured family meetings led by palliative care specialists and provision of an informational brochure (intervention) compared with provision of an informational brochure and routine family meetings conducted by ICU teams (control). There were 130 patients with 184 family surrogate decision makers in the intervention group and 126 patients with 181 family surrogate decision makers in the control group. MAIN OUTCOMES AND MEASURES: The primary outcome was Hospital Anxiety and Depression Scale symptom score (HADS; score range, 0 [best] to 42 [worst]; minimal clinically important difference, 1.5) obtained during 3-month follow-up interviews with the surrogate decision makers. Secondary outcomes included posttraumatic stress disorder experienced by the family and measured by the Impact of Events Scale-Revised (IES-R; total score range, 0 [best] to 88 [worst]), discussion of patient preferences, hospital length of stay, and 90-day survival. RESULTS: Among 365 family surrogate decision makers (mean age, 51 years; 71% female), 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group (adjusted mean HADS score, 12.2 vs 11.4, respectively; between-group difference, 0.8 [95% CI, -0.9 to 2.6]; P = .34). Posttraumatic stress disorder symptoms were higher in the intervention group (adjusted mean IES-R score, 25.9) compared with the control group (adjusted mean IES-R score, 21.3) (between-group difference, 4.60 [95% CI, 0.01 to 9.10]; P = .0495). There was no difference between groups regarding the discussion of patient preferences (intervention, 75%; control, 83%; odds ratio, 0.63 [95% CI, 0.34 to 1.16; P = .14]). The median number of hospital days for patients in the intervention vs the control group (19 days vs 23 days, respectively; between-group difference, -4 days [95% CI, -6 to 3 days]; P = .51) and 90-day survival (hazard ratio, 0.95 [95% CI, 0.65 to 1.38], P = .96) were not significantly different. CONCLUSIONS AND RELEVANCE: Among families of patients with chronic critical illness, the use of palliative care-led informational and emotional support meetings compared with usual care did not reduce anxiety or depression symptoms and may have increased posttraumatic stress disorder symptoms. These findings do not support routine or mandatory palliative care-led discussion of goals of care for all families of patients with chronic critical illness. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01230099.
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A recent intervention in which palliative care providers provided prognostic information and unstructured emotional support over 1 to 2 meetings had no effect on family members' psychological distress or length of stay for patients with chronic critical illness.
“a recent intervention in which palliative care providers provided prognostic information and unstructured emotional support over 1 to 2 meetings had no effect on family members’ psychological distress or length of stay for patients with chronic critical illness (43).”
From Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation (2019) · cites this paper as [43]
Split into 2 atoms — 0 confirmed, 2 partially supported, 0 disputed, 0 misattributed, 0 unverifiable. Expand the claim to see per-atom verdicts.
Experimental — accuracy not yet measuredIn a recent randomized controlled trial, PTSD symptoms increased for surrogate decision-makers of ICU patients who received a family meeting intervention led by palliative care medical specialists designed to reduce surrogate anxiety and depression.
“In a recent randomized controlled trial (RCT), post-traumatic stress disorder (PTSD) symptoms increased for surrogate decision-makers of ICU patients who received a family meeting intervention led by palliative care medical specialists that was designed to reduce surrogate anxiety and depression [6].”
Previous trials led by ICU and palliative care clinicians have proven inefficacious in improving mental health outcomes in informal caregivers.
“Previous trials led by ICU and palliative care clinicians have proven inefficacious in improving mental health outcomes in informal caregivers [5–11].”
Prior interventions to address family surrogates' distress have had limited success, and some may even exacerbate surrogates' traumatic stress responses.
“However, prior research has shown these interventions not only have limited success but that some may even exacerbate surrogates' traumatic stress responses (14-20).”
From EMPOWER: A Multi-Site Pilot Trial to Reduce Distress in Surrogate Decision-Makers in the ICU (2024) · cites this paper as [16]
Several interventions have not observed strong effects on psychological outcomes.
“distinguishing it from several interventions that have not observed strong effects on psychological outcomes (14-20)”
From EMPOWER: A Multi-Site Pilot Trial to Reduce Distress in Surrogate Decision-Makers in the ICU (2024) · cites this paper as [16]
The majority of prior trials of surrogate interventions did not target surrogates who are anxious and/or emotionally dependent on the patient.
“which the majority of prior trials of surrogate interventions did not do (14-20)”
From EMPOWER: A Multi-Site Pilot Trial to Reduce Distress in Surrogate Decision-Makers in the ICU (2024) · cites this paper as [16]
Increases in DNACPR decisions and especially use of blanket CPR exclusion criteria such as age may introduce selection bias and hamper the generalisability of the research results, as well as their applicability to normal conditions.
“Lastly, increases in DNACPR decisions and especially use of blanket CPR exclusion criteria such as age 87,88,385,390,393 may introduce selection bias and hamper the generalisability of the research results, as well as their applicability to normal conditions.”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [88]
The Methods (Enrollment Criteria; page unavailable) list eligibility and exclusions for a trial of palliative care–led family meetings, but do not describe DNACPR decisions or blanket CPR exclusions based on age. The Discussion (Study limitations; page unavailable) addresses blinding and possible contamination, not selection bias or generalisability arising from those practices. Searches for DNACPR, do-not-resuscitate orders, age cutoffs, and generalisability found no passage addressing the attributed claim. (LLM, conf=0.76)
Experimental — accuracy not yet measuredPalliative care meetings failed to show benefit in decreasing anxiety and depression in surrogate decision makers in the intervention group but did increase post-traumatic stress disorder (PTSD) symptoms.
“Palliative care meetings failed to show benefit in decreasing anxiety and depression in surrogate decision makers in the intervention group but did increase post-traumatic stress disorder (PTSD) symptoms.”
From Surviving sepsis campaign: international guidelines for management of sepsis and septic shock 2021 (2021) · cites this paper as [543]
Carson et al. found increased PTSD symptoms in family surrogate decision makers who received palliative care consultation.
“In contrast, Carson et al. found an increase in PTSD symptoms in family surrogate decision makers with palliative care consultation [543].”
From Surviving sepsis campaign: international guidelines for management of sepsis and septic shock 2021 (2021) · cites this paper as [543]
Palliative care interventions have been studied in ICU patients, but not specifically in patients with sepsis.
“Studies have evaluated palliative care interventions in the ICU but not specifically in patients with sepsis [543, 545–548].”
From Surviving sepsis campaign: international guidelines for management of sepsis and septic shock 2021 (2021) · cites this paper as [543]
Palliative care interventions had no significant impact on family satisfaction, ICU length of stay, hospital length of stay, or mortality.
“Palliative care interventions had no significant impact on family satisfaction with care, ICU length of stay [543, 545–548], hospital length of stay [543, 545, 548], or mortality [543, 545, 548].”
From Surviving sepsis campaign: international guidelines for management of sepsis and septic shock 2021 (2021) · cites this paper as [543]
Neither study demonstrated an effect of interventions on mortality.
“Neither study demonstrated an effect of interventions on mortality.”
From Surviving sepsis campaign: international guidelines for management of sepsis and septic shock 2021 (2021) · cites this paper as [543]
No benefit was demonstrated on family satisfaction, ICU days, or hospital days.
“No benefit was demonstrated on family satisfaction, ICU days, or hospital days.”
From Surviving sepsis campaign: international guidelines for management of sepsis and septic shock 2021 (2021) · cites this paper as [543]
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References 46 · Cited by 352
- Authors
- Carson, S. S., Cox, C. E., Wallenstein, S., Hanson, L. C., Danis, M., Tulsky, J. A., Chai, E., & Nelson, J. E.
- Affiliations
- University of North Carolina at Chapel Hill (US)
- Duke Medical Center (US)
- Icahn School of Medicine at Mount Sinai (US)
- National Institutes of Health (US)
- Brigham and Women's Hospital (US)
- Memorial Sloan Kettering Cancer Center (US)
- Corresponding author
- Carson, Shannon S.
- ORCID
- Venue
- JAMA
- Publisher
- American Medical Association (AMA)
- Published
- 2016-07-05
- Volume
- 316
- Issue
- 1
- Pages
- 51
- ISSN
- 0002-9955 (ISSN-L)
- 0098-7484
- PMC
- PMC5538801
- OpenAlex
- W2462215746
- Semantic Scholar
- 6f67bce4395f3b26309cfc931edca096628d05ee
- Cited by
- 352
- References
- 46
- Citations by year
- 2026: 26 · 2025: 16 · 2024: 41 · 2023: 25 · 2022: 37 · 2021: 44 · 2020: 34 · 2019: 41 · 2018: 27 · 2017: 48 · 2016: 12 · 2015: 1
- FWCI
- 71.15
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- JAMA (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Cancer Institute (P30CA008748)
- National Institute of Nursing Research (R01NR012413)
- Cecil G. Sheps Center for Health Services Research, University of North Carolina, Chapel Hill
- Topics
- Health Sciences › Health Professions › Radiological and Ultrasound Technology › Family and Patient Care in Intensive Care Units
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Critical Care and Intensive Care Medicine › Intensive Care Unit Cognitive Disorders
- Keywords
- palliative care, family caregivers, chronic critical illness, family meetings, anxiety, depression, post-traumatic stress disorder, psychological distress, intensive care unit, mechanical ventilation, patient preferences, family-centered care, length of hospital stay, 90-day survival, informational brochures, end-of-life care, advance care planning
- MeSH terms
- Anxiety, Chronic Disease, Decision Making, Depression, Family, Female, Humans, Intensive Care Units, Length of Stay, Male, Middle Aged, Palliative Care, Pamphlets, Stress Disorders, Post-Traumatic, Critical Illness, Caregivers, Proxy, Patient Preference
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