Family surrogate decision-making in chronic critical illness: A qualitative analysis.
Open accessAbstract
BACKGROUND: Caring for an adult with chronic critical illness is a difficult undertaking. Family surrogates are tasked with decision-making on behalf of their loved one, particularly during acute-on-chronic illness episodes. Critical care nurses are well positioned and well qualified to facilitate this process. OBJECTIVES: To explore family surrogate decision-making for people with chronic critical illness. METHODS: In this qualitative study, interviews were conducted with family surrogates (n = 7) as part of a larger descriptive, longitudinal study (N = 264). Content analyses were guided by Miles and colleagues' methods of data analysis. RESULTS: Family surrogates serving as decision makers for a spouse or another adult loved one were mostly female. Although decision-making was often described as "frustrating," most surrogates reported that they were "comfortable" with this role. Major decision-making themes were "communication as key in decision-making," "impact of past experiences," and "difficulties and coping." Advice from family and friends, health care providers (such as nurses), and faith or spirituality were significant resources for coping with decision-making challenges. CONCLUSIONS: Results support recent recommendations of the National Academy of Medicine that endorsed shared decision-making. Data also support development of more effective team communication and decision support strategies, particularly addressing consistency and continuity. Critical care nurses can use their expertise to positively influence these outcomes.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The updated literature search identified no new RCTs but two meta-analyses comparing continuous and intermittent renal replacement therapies.
“Our updated literature search identified no new RCTs but two meta-analysis comparing continuous and intermittent renal replacement therapies (503, 504).”
From Surviving Sepsis Campaign: International Guidelines for Management of Sepsis and Septic Shock 2021. (2021) · cites this paper as [504]
The paper’s Abstract (Methods; page unavailable) describes interviews with family surrogates, and its Discussion addresses decision-making in chronic critical illness. Searches for renal replacement therapies, RCTs, and the claimed updated literature search found no passage addressing the claim. (LLM, conf=0.76)
Experimental — accuracy not yet measuredA small study of ICU relatives found that anxiety and depression rates were lower in those who preferred an active role or shared responsibility in decision-making compared to those who preferred a passive role.
“A small study of ICU relatives found that anxiety and depression rates were lower in those who preferred an active role or shared responsibility in decision-making compared to those who preferred a passive role (591).”
From Surviving Sepsis Campaign: International Guidelines for Management of Sepsis and Septic Shock 2021. (2021) · cites this paper as [591]
The Discussion mentions anxiety and depression among ICU family members but does not compare rates by preferred decision-making role. It instead proposes future research comparing caregivers involved in decisions with those who are not. Searches for active, shared, and passive roles found no such comparison in our copy. (LLM, conf=0.73)
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Three Approaches to Qualitative Content Analysis
Hsieh, H.-F., & Shannon, S. E. (2005) · Qualitative Health Research · doi:10.1177/1049732305276687 · Cited by 44,601 · see citing works
How Many Interviews Are Enough?: An Experiment with Data Saturation and Variability
Guest, G., Bunce, A., & Johnson, L. (2006) · Field Methods · doi:10.1177/1525822x05279903 · Cited by 20,808 · see citing works
Qualitative Data Analysis: A Methods Sourcebook
Miles, M. B., Huberman, A. M., & Saldaña, J. (1988) · Cited by 20,701 · see citing works
(2016) · Andalas University Repository (Andalas University) · Cited by 8,424 · see citing works
Family response to critical illness: Postintensive care syndrome–family
Davidson, J. E., Jones, C., & Bienvenu, O. J. (2012) · Critical Care Medicine · doi:10.1097/ccm.0b013e318236ebf9 · Cited by 936 · see citing works
Systematic Review: The Effect on Surrogates of Making Treatment Decisions for Others
Wendler, D., & Rid, A. (2011) · Annals of Internal Medicine · doi:10.7326/0003-4819-154-5-201103010-00008 · Cited by 691 · see citing works
Meeting the Needs of Intensive Care Unit Patient Families
Azoulay, É., Pochard, F., Chevret, S., Lemaire, F., MOKHTARI, M., Gall, J. L., Dhainaut, J. F., & Schlemmer, B. (2001) · American Journal of Respiratory and Critical Care Medicine · doi:10.1164/ajrccm.163.1.2005117 · Cited by 389 · see citing works
Symptom experiences of family members of intensive care unit patients at high risk for dying
McAdam, J. L., Dracup, K., White, D. B., Fontaine, D. K., & Puntillo, K. (2010) · Critical Care Medicine · doi:10.1097/ccm.0b013e3181cf6d94 · Cited by 251 · see citing works
Practice jazz: understanding variation in family practices using complexity science.
Miller, W. L., McDaniel, R. R., Crabtree, B. F., & Stange, K. C. (2001) · PubMed · Cited by 239 · see citing works
Communication About Chronic Critical Illness
Nelson, J. E. (2007) · Archives of Internal Medicine · doi:10.1001/archinte.167.22.2509 · Cited by 157 · see citing works
Daly, B. J., Douglas, S. L., Kelley, C. G., O’Toole, E. E., & Montenegro, H. D. (2005) · CHEST Journal · doi:10.1378/chest.128.2.507 · Cited by 151 · see citing works
Self-citationPsychological Symptoms of Family Members of High-Risk Intensive Care Unit Patients
McAdam, J. L., Fontaine, D. K., White, D. B., Dracup, K., & Puntillo, K. (2012) · American Journal of Critical Care · doi:10.4037/ajcc2012582 · Cited by 128 · see citing works
The chronically critically ill: to save or let die?
Girard, K. L., & Raffin, T. A. (1985) · PubMed · Cited by 103 · see citing works
Iverson, E. F., Celious, A., Kennedy, C. R., Shehane, E., Eastman, A. L., Warren, V., & Freeman, B. D. (2013) · Intensive and Critical Care Nursing · doi:10.1016/j.iccn.2013.08.008 · Cited by 81 · see citing works
New developments in the provision of family-centered care in the intensive care unit
Gerritsen, R. T., Hartog, C. S., & Curtis, J. R. (2017) · Intensive Care Medicine · doi:10.1007/s00134-017-4684-5 · Cited by 70 · see citing works
Rethinking Interventions to Improve Surrogate Decision Making in Intensive Care Units
White, D. B. (2011) · American Journal of Critical Care · doi:10.4037/ajcc2011106 · Cited by 68 · see citing works
Complexity Analysis of Decision-Making in the Critically Ill
Daly, B. J., Douglas, S. L., O’Toole, E. E., Rowbottom, J. R., Hoffer, A., Lipson, A. R., & Burant, C. J. (2016) · Journal of Intensive Care Medicine · doi:10.1177/0885066616678394 · Cited by 31 · see citing works
Self-citationA Qualitative Analysis of Family Surrogate Decision Making in Chronic Critical Illness (S729)
Moss, K. O., Douglas, S. L., Baum, E., & Daly, B. J. (2017) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2016.12.239 · Cited by 1 · see citing works
Self-citation
Flagged first, then by citations
Research works printed but not linked: 1
- [2]Institute of Medicine of the National Academies. Dying in America: Improving quality and honoring individual preferences near the end of life. 2014 http://www.nationalacademies.org/hmd/Reports/2014/Dying-In-America-Improving- 25927121
Cited by
Sorted by citations
Surviving sepsis campaign: international guidelines for management of sepsis and septic shock 2021
Evans, L., Rhodes, A., Alhazzani, W., Antonelli, M., Coopersmith, C. M., French, C., Machado, F. R., Mcintyre, L., Ostermann, M., Prescott, H. C., et al. (2021) · Intensive Care Medicine · doi:10.1007/s00134-021-06506-y · Cited by 5,082 · see citing works
Surviving Sepsis Campaign: International Guidelines for Management of Sepsis and Septic Shock 2021.
Evans, L., Rhodes, A., Alhazzani, W., Antonelli, M., Coopersmith, C. M., French, C., Machado, F. R., Mcintyre, L., Ostermann, M., Prescott, H. C., et al. (2021) · Critical Care Medicine · doi:10.1097/ccm.0000000000005337 · Cited by 2,935 · see citing works
Sui, W., Gong, X., Qiao, X., Zhang, L., Cheng, J., Dong, J., & Zhuang, Y. (2022) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2022.104391 · Cited by 45 · see citing works
Decision-Making Processes in Surrogates of Cancer Patients in a Taiwan Intensive Care Unit
Sun, W.-N., Hsu, H.-T., Ko, N.-Y., & Huang, Y.-T. (2020) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph17124443 · Cited by 23 · see citing works
Health-related expectations of the chronically critically ill: a multi-perspective qualitative study
Howard, A. F., Crowe, S., Choroszewski, L., Kovatch, J., Haynes, A. J., Ford, J. S., Beck, S. M., & Haljan, G. J. (2021) · BMC Palliative Care · doi:10.1186/s12904-020-00696-w · Cited by 18 · see citing works
Navigating disagreement and conflict in the context of a brain-based definition of death
Simpson, C., Lee-Ameduri, K., Hartwick, M., Shaul, R., Kanji, A., Healey, A., Murphy, N. B., & Pope, T. (2023) · Canadian Journal of Anesthesia/Journal canadien d'anesthésie · doi:10.1007/s12630-023-02417-2 · Cited by 10 · see citing works
Understanding of Health-related Decision-making Terminology Among Cancer Caregivers
Moss, K. O., Douglas, S. L., Lipson, A. R., Blackstone, E. C., WILLIAMS, D. A., Aaron, S., & Wills, C. E. (2020) · Western Journal of Nursing Research · doi:10.1177/0193945920965238 · Cited by 9 · see citing works
Self-citationLu, S.-J., Ku, S., Liu, K., & Chien, C. (2023) · Asian Nursing Research · doi:10.1016/j.anr.2023.10.001 · Cited by 9 · see citing works
Howard, A. F., Crowe, S., Choroszewski, L., Kovatch, J., Kelly, M. T., & Haljan, G. J. (2022) · Chronic Illness · doi:10.1177/17423953221141134 · Cited by 6 · see citing works
Sun, W., Hsu, H., Huang, Y., Ko, N., & Chen, J. (2024) · Supportive Care in Cancer · doi:10.1007/s00520-024-08916-2 · Cited by 8 · see citing works
Moss, K. O., Guerin, R. M., Dwyer, O. M., Wills, C. E., & Daly, B. J. (2019) · Journal of Hospice and Palliative Nursing · doi:10.1097/njh.0000000000000608 · Cited by 5 · see citing works
Self-citationShi, J., Dai, J., Pan, J., Xie, Z., Wang, M., Mao, L., & Fang, Z. (2025) · Nursing in Critical Care · doi:10.1111/nicc.70204 · Cited by 3 · see citing works
Phenomenological study on decision fatigue among surrogate decision-makers for ICU patients
Zhuang, Y., Li, P., Xu, Y., & Fu, L. (2025) · Medicine · doi:10.1097/md.0000000000044669 · Cited by 1 · see citing works
Perceived Needs of Families of Critically Ill Patients
Brady, D. R., O’Neill, J. R., & Condon, J. M. (2025) · Critical Care Nursing Clinics of North America · doi:10.1016/j.cnc.2025.10.009 · Cited by 1 · see citing works
Lundy, T. (2020) · CUNY Academic Works (City University of New York) · Cited by 1 · see citing works
Spiritual Care for Increasing the Quality of Nursing Service in 21st Century: A ReviewPreprint
Ningsih, E. S. P., & Pandin, M. G. R. (2021) · Preprints.org · doi:10.20944/preprints202103.0730.v1 · Cited by 1 · see citing works
What Is Chronic Critical Illness and What Outcomes Can Be Expected
Wendlandt, B., Cox, C. E., & Curtis, J. R. (2023) · Elsevier eBooks · doi:10.1016/b978-0-323-84702-5.00048-8
Ali, N. A., & Hashim, N. (2024) · The Malaysian Journal of Nursing · doi:10.31674/mjn.2024.v15i04.0018 · Cited by 1 · see citing works
Howard, A. F., Crowe, S., Choroszewski, L., Kovatch, J., Haynes, A. J., Ford, J. S., Beck, S. M., & Haljan, G. J. (2021) · Figshare · doi:10.6084/m9.figshare.13521228
Older Spouses' Decision‐Making on Intubation for Older Patients: A Qualitative Study
Jiwnoy, J., Tabootwong, W., & Kangchai, W. (2026) · International Journal of Older People Nursing · doi:10.1111/opn.70073
Eid, M., Hambridge, K., Schofield, P., & Latour, J. M. (2026) · Nursing in Critical Care · doi:10.1111/nicc.70624
Surrogate Medical Decision-Making in Dementia: A Theory-Informed Integrative Review.
McGowan, C., Zoucha, R., & Kalarchian, M. (2026) · Journal of Advanced Nursing · doi:10.1111/jan.70721
Ali, S. I., & Shaban, M. (2026) · Nursing in Critical Care · doi:10.1111/nicc.70684
- Authors
- Moss, K. O., Douglas, S. L., Baum, E., & Daly, B.
- Affiliations
- University Hospitals of Cleveland (US)
- Venue
- Critical Care Nurse
- Publisher
- AACN Publishing
- Published
- 2019-06
- Volume
- 39
- Issue
- 3
- Pages
- e18-e26
- ISSN
- 0279-5442 (ISSN-L)
- 1940-8250
- PMC
- PMC6764597
- OpenAlex
- W2947429152
- Cited by
- 25
- References
- 19
- Citations by year
- 2026: 4 · 2025: 3 · 2024: 3 · 2023: 3 · 2022: 3 · 2021: 5 · 2020: 3 · 2019: 1
- FWCI
- 3.71
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Critical Care Nurse (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (TL1TR002549)
- National Institute of Nursing Research (R01NR013322, T32NR014213)
- National Center for Advancing Translational Sciences
- 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 › Health Professions › General Health Professions › Ethics in medical practice
- Keywords
- family surrogate decision-making, chronic critical illness, shared decision-making, family caregivers, faith and spirituality, critical care nursing, team communication, continuity of care
- MeSH terms
- Adult, Attitude of Health Personnel, Chronic Disease, Critical Care, Decision Making, Female, Health Personnel, Humans, Interviews as Topic, Longitudinal Studies, Male, Middle Aged, Professional-Family Relations, United States, Critical Illness, Nurse's Role, Interdisciplinary Communication, Qualitative Research, Critical Care Nursing
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
