Communication About Chronic Critical Illness
Open accessAbstract
BACKGROUND: Despite poor outcomes, life-sustaining treatments including mechanical ventilation are continued for a large and growing population of patients with chronic critical illness. This may be owing in part to a lack of understanding resulting from inadequate communication between clinicians and patients and families. Our objective was to investigate the informational needs of patients with chronic critical illness and their families and the extent to which these needs are met. METHODS: In this prospective observational study conducted at 5 adult intensive care units in a large, university-affiliated hospital in New York, New York, 100 patients with chronic critical illness (within 3-7 days of elective tracheotomy for prolonged mechanical ventilation) or surrogates for incapacitated patients were surveyed using an 18-item questionnaire addressing communication about chronic critical illness. Main outcome measures included ratings of importance and reports of whether information was received about questionnaire items. RESULTS: Among 125 consecutive, eligible patients, 100 (80%) were enrolled; questionnaire respondents included 2 patients and 98 surrogates. For all items, more than 78% of respondents rated the information as important for decision making (>98% for 16 of 18 items). Respondents reported receiving no information for a mean (SD) of 9.0 (3.3) of 18 items, with 95% of respondents reporting not receiving information for approximately one-quarter of the items. Of the subjects rating the item as important, 77 of 96 (80%) and 69 of 74 (93%) reported receiving no information about expected functional status at hospital discharge and prognosis for 1-year survival, respectively. CONCLUSIONS: Many patients and their families may lack important information for decision making about continuation of treatment in the chronic phase of critical illness. Strategies for effective communication in this clinical context should be investigated and implemented.
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Clinicians often fail to adequately elicit patient treatment preferences, provide guidance about the surrogate's role, disclose likely long-term outcomes, and discuss the option of comfort-focused care.
“clinicians often fail to adequately elicit patient treatment preferences, provide guidance about the surrogate’s role, disclose likely long-term outcomes, and discuss the option of comfort-focused care (7–13).”
From Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation (2019) · cites this paper as [8]
Cites
Ely, E. W., Inouye, S. K., Bernard, G. R., Gordon, S., Francis, J., May, L., Truman, B., Speroff, T., Gautam, S., Margolin, R., et al. (2001) · JAMA · doi:10.1001/jama.286.21.2703 · Cited by 3,210 · see citing works
Validation of a short Orientation-Memory-Concentration Test of cognitive impairment
Katzman, R., Brown, T., Fuld, P. A., Peck, A., Schechter, R., & Schimmel, H. (1983) · American Journal of Psychiatry · doi:10.1176/ajp.140.6.734 · Cited by 2,119 · see citing works
Understanding the treatment preferences of seriously ill patients.
Fried, T., Bradley, E. H., Towle, V., & Allore, H. (2002) · New England Journal of Medicine · doi:10.1056/nejmsa012528 · Cited by 1,426 · see citing works
A communication strategy and brochure for relatives of patients dying in the ICU.
Lautrette, A., Darmon, M., Megarbane, B., Joly, L. M., Chevret, S., Adrie, C., Barnoud, D., Bleichner, G., Bruel, C., Choukroun, G., et al. (2007) · New England Journal of Medicine · doi:10.1056/nejmoa063446 · Cited by 1,279 · cited 3× · see citing works
“Length of hospital stay, median [range], d 51 [15-224]”
BackgroundBack, A. L. (2007) · Archives of Internal Medicine · doi:10.1001/archinte.167.5.453 · Cited by 799 · see citing works
Azoulay, E., Chevret, S., Leleu, G., Pochard, F., Barboteu, M., Adrie, C., Canoui, P., Le Gall, J. R., & Schlemmer, B. (2000) · Critical Care Medicine · doi:10.1097/00003246-200008000-00061 · Cited by 746 · see citing works
Pochard, F., Azoulay, É., Chevret, S., Lemaire, F., Hubert, P., Canouï, P., Grassin, M., Zittoun, R., Gall, J. L., Dhainaut, J. F., et al. (2001) · Critical Care Medicine · doi:10.1097/00003246-200110000-00007 · Cited by 714 · see citing works
Schneiderman, L. J., Gilmer, T., Teetzel, H. D., Dugan, D. O., Blustein, J., Cranford, R., Briggs, K. B., Komatsu, G. I., Goodman-Crews, P., Cohn, F., et al. (2003) · JAMA · doi:10.1001/jama.290.9.1166 · Cited by 661 · see citing works
Murphy, D. J., Burrows, D. L., Santilli, S., Kemp, A. W., Tenner, S. M., Kreling, B. A., & Teno, J. M. (1994) · New England Journal of Medicine · doi:10.1056/nejm199402243300807 · Cited by 581 · see citing works
An intensive communication intervention for the critically ill
Lilly, C. M., Meo, D. L. D., Sonna, L. A., Haley, K. J., Massaro, A. F., Wallace, R. F., & Cody, S. (2000) · The American Journal of Medicine · doi:10.1016/s0002-9343(00)00524-6 · Cited by 509 · see citing works
McDonagh, J. R., Elliott, T. B., Engelberg, R. A., Treece, P. D., Shannon, S. E., Rubenfeld, G. D., Patrick, D. L., & Curtis, J. R. (2004) · Critical Care Medicine · doi:10.1097/01.ccm.0000127262.16690.65 · Cited by 489 · see citing works
Abbott, K. H., Sago, J., Breen, C. M., Abernethy, A. P., & Tulsky, J. A. (2001) · Critical Care Medicine · doi:10.1097/00003246-200101000-00040 · Cited by 475 · see citing works
Pochard, F., Darmon, M., Fassier, T., Bollaert, P., Cheval, C., Coloigner, M., Merouani, A., Moulront, S., Pigné, E., Pingat, J., et al. (2005) · Journal of critical care · doi:10.1016/j.jcrc.2004.11.004 · Cited by 458 · see citing works
Family satisfaction with care in the intensive care unit: Results of a multiple center study*
Heyland, D. K., Rocker, G. M., Dodek, P., Kutsogiannis, D. J., Konopad, E., Cook, D. J., Peters, S., Tranmer, J. E., & O'Callaghan, C. J. (2002) · Critical Care Medicine · doi:10.1097/00003246-200207000-00002 · Cited by 458 · see citing works
Missed Opportunities during Family Conferences about End-of-Life Care in the Intensive Care Unit
Curtis, J. R., Engelberg, R. A., Wenrich, M. D., Shannon, S. E., Treece, P. D., & Rubenfeld, G. D. (2005) · American Journal of Respiratory and Critical Care Medicine · doi:10.1164/rccm.200409-1267oc · Cited by 410 · see citing works
Azoulay, E., Pochard, F., Chevret, S., Jourdain, M., Bornstain, C., Wernet, A., Cattaneo, I., Annane, D., Brun, F., Bollaert, P.-E., et al. (2002) · American Journal of Respiratory and Critical Care Medicine · doi:10.1164/ajrccm.165.4.200108-006oc · Cited by 368 · see citing works
Fallowfield, L. J., Lipkin, M., & Hall, A. (1998) · Journal of Clinical Oncology · doi:10.1200/jco.1998.16.5.1961 · Cited by 359 · see citing works
Enduring impact of communication skills training: results of a 12-month follow-up
Fallowfield, L. J., Jenkins, V. A., Farewell, V. T., & Solis‐Trapala, I. (2003) · British Journal of Cancer · doi:10.1038/sj.bjc.6601309 · Cited by 357 · see citing works
Impact of a Proactive Approach to Improve End-of-Life Care in a Medical ICU
Campbell, M., & Guzmán, J. A. (2003) · CHEST Journal · doi:10.1378/chest.123.1.266 · Cited by 353 · see citing works
The symptom burden of chronic critical illness*
Nelson, J. E., Meier, D. E., Litke, A., Natale, D. K., Siegel, R. E., & Morrison, R. S. (2004) · Critical Care Medicine · doi:10.1097/01.ccm.0000129485.08835.5a · Cited by 308 · see citing works
Self-citationManagement of Patients Requiring Prolonged Mechanical Ventilation
Low, T., Lin, Y., Law, C.-L., & Lin, C. (2017) · 內科學誌 · doi:10.6314/jimt.2017.28(1).05 · Cited by 305 · see citing works
Fried, T. R., Bradley, E. H., & O'Leary, J. (2003) · Journal of the American Geriatrics Society · doi:10.1046/j.1532-5415.2003.51457.x · Cited by 301 · see citing works
Decision-making in the ICU: perspectives of the substitute decision-maker
Heyland, D. K., Cook, D. J., Rocker, G. M., Dodek, P., Kutsogiannis, D. J., Peters, S., Tranmer, J. E., & O'Callaghan, C. J. (2003) · Intensive Care Medicine · doi:10.1007/s00134-002-1569-y · Cited by 293 · see citing works
Increase in tracheostomy for prolonged mechanical ventilation in North Carolina, 1993–2002
Cox, C. E., Carson, S. S., Holmes, G. M., Howard, A. E. D., & Carey, T. S. (2004) · Critical Care Medicine · doi:10.1097/01.ccm.0000145232.46143.40 · Cited by 269 · see citing works
Outcomes after Long-Term Acute Care: An Analysis of 133 Mechanically Ventilated Patients
Carson, S. S., Bach, P. B., Brzozowski, L. A., & Leff, A. R. (1999) · American Journal of Respiratory and Critical Care Medicine · doi:10.1164/ajrccm.159.5.9809002 · Cited by 257 · see citing works
Dowdy, M. D., Robertson, C., & Bander, J. A. (1998) · Critical Care Medicine · doi:10.1097/00003246-199802000-00020 · Cited by 237 · see citing works
End-of-life care for the critically ill: A national intensive care unit survey*
Nelson, J. E., Angus, D. C., Weissfeld, L. A., Puntillo, K., Danis, M., Deal, D., Levy, M. M., & Cook, D. J. (2006) · Critical Care Medicine · doi:10.1097/01.ccm.0000239233.63425.1d · Cited by 232 · see citing works
Self-citationConflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors
Studdert, D. M., Mello, M. M., Burns, J. P., Puopolo, A. L., Galper, B. Z., Truog, R. D., & Brennan, T. A. (2003) · Intensive Care Medicine · doi:10.1007/s00134-003-1853-5 · Cited by 214 · see citing works
The epidemiology and costs of chronic critical illness
Carson, S. S., & Bach, P. B. (2002) · Critical Care Clinics · doi:10.1016/s0749-0704(02)00015-5 · Cited by 201 · see citing works
Post-ICU Mechanical Ventilation at 23 Long-term Care Hospitals
Scheinhorn, D. J., Hassenpflug, M. S., Votto, J. J., Chao, D. C., Epstein, S. K., Doig, G. S., Knight, E. B., & Petrak, R. A. (2007) · CHEST Journal · doi:10.1378/chest.06-1081 · Cited by 197 · see citing works
Decision‐Making and Outcomes of Prolonged ICU Stays in Seriously Ill Patients
Teno, J. M., Fisher, E., Hamel, M. B., Wu, A. W., Murphy, D. J., Wenger, N. S., Lynn, J., & Harrell, F. E. (2000) · Journal of the American Geriatrics Society · doi:10.1111/j.1532-5415.2000.tb03144.x · Cited by 182 · see citing works
Prospective Study of Health Status PREFERENCES and Changes in PREFERENCES Over Time in Older Adults
Fried, T. R., Byers, A. L., Gallo, W. T., Van Ness, P. H., Towle, V. R., O’Leary, J. R., & Dubin, J. A. (2006) · Archives of Internal Medicine · doi:10.1001/archinte.166.8.890 · Cited by 155 · see citing works
Nelson, J. E. (2006) · Archives of Internal Medicine · doi:10.1001/archinte.166.18.1993 · Cited by 139 · see citing works
Self-citationScheinhorn, D. J., Hassenpflug, M. S., Votto, J. J., Chao, D. C., Epstein, S. K., Doig, G. S., Knight, E. B., & Petrak, R. A. (2007) · CHEST Journal · doi:10.1378/chest.06-1079 · Cited by 135 · see citing works
Resuscitation decision making in the elderly
Schonwetter, R. S., Walker, R. M., Kramer, D. R., & Robinson, B. E. (1993) · Journal of General Internal Medicine · doi:10.1007/bf02600139 · Cited by 132 · see citing works
When critical illness becomes chronic: informational needs of patients and families
Nelson, J. E., Kinjo, K., Meier, D. E., Ahmad, K., & Morrison, R. S. (2005) · Journal of Critical Care · doi:10.1016/j.jcrc.2004.11.003 · Cited by 127 · see citing works
Self-citationOutcomes of prolonged mechanical ventilation
Carson, S. S. (2006) · Current Opinion in Critical Care · doi:10.1097/01.ccx.0000244118.08753.dc · Cited by 126 · see citing works
Cook, D. J., Guyatt, G. H., Rocker, G. M., Sjökvist, P., Weaver, B., Dodek, P., Marshall, J. C., Leasa, D. J., Levy, M. M., Varón, J., et al. (2001) · The Lancet · doi:10.1016/s0140-6736(01)06960-4 · Cited by 117 · see citing works
Dasgupta, A., Rice, R., Mascha, E. J., et al. (1999) · CHEST Journal · doi:10.1378/chest.116.2.447 · Cited by 106 · see citing works
Nasraway, S. A., Button, G. J., Rand, W. M., Hudson-Jinks, T. M., & Gustafson, M. (2000) · Critical Care Medicine · doi:10.1097/00003246-200001000-00004 · Cited by 104 · see citing works
Educating the Elderly: Cardiopulmonary Resuscitation Decisions before and after Intervention
Schonwetter, R. S., Teasdale, T. A., Taffet, G. E., Robinson, B. E., & Luchi, R. J. (1991) · Journal of the American Geriatrics Society · doi:10.1111/j.1532-5415.1991.tb02902.x · Cited by 96 · see citing works
Communication of Prognostic Information for Critically Ill Patients
LeClaire, M. M., Oakes, J. M., & Weinert, C. (2005) · CHEST Journal · doi:10.1378/chest.128.3.1728 · Cited by 71 · see citing works
The distinct clinical profile of chronically critically ill patients: a cohort study
Estenssoro, E., Reina, R., Canales, H. S., Sáenz, M. G., Gonzalez, F. E., Aprea, M. M., Laffaire, E., Gola, V., & Dubín, A. (2006) · Critical Care · doi:10.1186/cc4941 · Cited by 69 · see citing works
Biochemical Response to Treatment of Bone Hyperresorption in Chronically Critically Ill Patients
Nierman, D. M., & Mechanick, J. I. (2000) · CHEST Journal · doi:10.1378/chest.118.3.761 · Cited by 59 · see citing works
Dewar, D. M., Kurek, C. J., Lambrinos, J., Cohen, I. L., & Zhong, Y. (1999) · Critical Care Medicine · doi:10.1097/00003246-199912000-00006 · Cited by 55 · see citing works
How patients feel about prolonged mechanical ventilation 1 yr later*
Mendelsohn, A. B., Belle, S. H., Fischhoff, B., Wisniewski, S. R., Degenholtz, H. B., & Chelluri, L. (2002) · Critical Care Medicine · doi:10.1097/00003246-200207000-00007 · Cited by 45 · see citing works
Guentner, K., Hoffman, L. A., Happ, M. B., Kim, Y., Dabbs, A. D., Mendelsohn, A. B., & Chelluri, L. (2006) · American Journal of Critical Care · doi:10.4037/ajcc2006.15.1.65 · Cited by 28 · see citing works
Nierman, D. M., & Nelson, J. E. (2002) · Critical Care Clinics · doi:10.1016/s0749-0704(02)00017-9 · Cited by 19 · see citing works
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Nelson, J. E., Cox, C. E., Hope, A. A., & Carson, S. S. (2010) · American Journal of Respiratory and Critical Care Medicine · doi:10.1164/rccm.201002-0210ci · Cited by 616 · see citing works
Self-citationUnroe, M., Kahn, J. M., Carson, S. S., Govert, J. A., Martinu, T., Sathy, S. J., Clay, A. S., Chia, J., Gray, A., Tulsky, J. A., et al. (2010) · Annals of Internal Medicine · doi:10.7326/0003-4819-153-3-201008030-00007 · Cited by 427 · see citing works
Carson, S. S., Cox, C. E., Wallenstein, S., Hanson, L. C., Danis, M., Tulsky, J. A., Chai, E., & Nelson, J. E. (2016) · JAMA · doi:10.1001/jama.2016.8474 · Cited by 352 · see citing works
Self-citationExpectations and outcomes of prolonged mechanical ventilation*
Cox, C. E., Martinu, T., Sathy, S. J., Clay, A. S., Chia, J., Gray, A. L., Olsen, M. K., Govert, J. A., Carson, S. S., & Tulsky, J. A. (2009) · Critical Care Medicine · doi:10.1097/ccm.0b013e3181ab86ed · Cited by 319 · see citing works
Relationship Between ICU Length of Stay and Long-Term Mortality for Elderly ICU Survivors*
Moitra, V. K., Guerra, C., Linde-Zwirble, W. T., & Wunsch, H. (2016) · Critical Care Medicine · doi:10.1097/ccm.0000000000001480 · Cited by 221 · see citing works
Cox, C. E., White, D. B., Hough, C. L., Jones, D. M., Kahn, J. M., Olsen, M. K., Lewis, C. L., Hanson, L. C., & Carson, S. S. (2019) · Annals of Internal Medicine · doi:10.7326/m18-2335 · Cited by 152 · see citing works
Hough, C. L., Caldwell, E. S., Cox, C. E., Douglas, I. S., Kahn, J. M., White, D. B., Seeley, E. J., Bangdiwala, S. I., Rubenfeld, G. D., Angus, D. C., et al. (2015) · Critical Care Medicine · doi:10.1097/ccm.0000000000001205 · Cited by 79 · see citing works
Seaman, J. B., Arnold, R. M., Scheunemann, L. P., & White, D. B. (2017) · Annals of the American Thoracic Society · doi:10.1513/annalsats.201612-965oi · Cited by 76 · see citing works
Family surrogate decision-making in chronic critical illness: A qualitative analysis.
Moss, K. O., Douglas, S. L., Baum, E., & Daly, B. (2019) · Critical Care Nurse · doi:10.4037/ccn2019176 · Cited by 25 · see citing works
- Authors
- Nelson, J. E.
- Affiliations
- Icahn School of Medicine at Mount Sinai (US)
- Corresponding author
- Nelson, Judith E.
- ORCID
- Nelson, Judith E.
- Venue
- Archives of Internal Medicine
- Publisher
- American Medical Association (AMA)
- Published
- 2007-12-10
- Volume
- 167
- Issue
- 22
- Pages
- 2509
- ISSN
- 0003-9926 (ISSN-L)
- PMC
- PMC3157319
- OpenAlex
- W2164388803
- Cited by
- 157
- References
- 48
- Citations by year
- 2026: 2 · 2025: 4 · 2024: 5 · 2023: 11 · 2022: 4 · 2021: 8 · 2020: 9 · 2019: 11 · 2018: 9 · 2017: 18 · 2016: 8 · 2015: 11 · 2014: 6 · 2013: 6 · 2012: 9
- FWCI
- 9.95
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Archives of Internal Medicine (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (5k02ag024476-02)
- National Institute on Aging (K02-AG024476)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › Radiological and Ultrasound Technology › Family and Patient Care in Intensive Care Units
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Keywords
- chronic critical illness, patient-family communication, information needs, prolonged mechanical ventilation, tracheotomy, surrogate decision-making, prognosis disclosure, life-sustaining treatment, intensive care unit, end-of-life decisions
- MeSH terms
- Adult, Aged, Aged, 80 and over, Chronic Disease, Communication, Decision Making, Female, Follow-Up Studies, Humans, Male, Middle Aged, New York, Physician-Patient Relations, Prospective Studies, Surveys and Questionnaires, Truth Disclosure, Incidence, Survival Rate, Critical Illness
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