Real-time perspectives of surrogate decision-makers regarding critical illness research: Findings of focus group participants

Chest

Volumn 142, Issue 6, 2012, Pages 1433-1439

  Iverson, Ellen ^a   Celious, Aaron ^a   Kennedy, Carie R ^b   Shehane, Erica ^a   Eastman, Alexander ^c   Warren, Victoria ^c   Bolcic Jankovic, Dragana ^d   Clarridge, Brian ^d   Freeman, Bradley D ^b  

^a CHILDREN S HOSPITAL LOS ANGELES   (United States)

^b WASHINGTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER   (United States)

^d Center for Survey Research   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ALTRUISM; ARTICLE; ATTITUDE; ATTITUDE TO RESEARCH; AUDIO RECORDING; CLINICAL RESEARCH; CRITICAL ILLNESS; CRITICALLY ILL PATIENT; DATA ANALYSIS; DEMOGRAPHY; EMOTIONAL STRESS; FAMILY; FEMALE; GROUNDED THEORY; HEALTH CARE PERSONNEL; HUMAN; INFORMATION PROCESSING; INFORMED CONSENT; INTENSIVE CARE; INTERVENTION STUDY; MALE; MEDICAL DECISION MAKING; MISCELLANEOUS NAMED GROUPS; MOTIVATION; NORMAL HUMAN; OBSERVATIONAL STUDY; PATIENT PARTICIPATION; PRIORITY JOURNAL; PROSPECTIVE STUDY; RELIGION; SEX RATIO; SOCIAL BEHAVIOR; SOCIAL SUPPORT; STATISTICAL ANALYSIS; SURROGATE DECISION MAKER; TREATMENT FAILURE; TRUST; URBAN AREA;

EID: 84870598743     PISSN: 00123692     EISSN: 19313543     Source Type: Journal    
DOI: 10.1378/chest.11-3199     Document Type: Article

References (28)

1. Luce JM, Cook DJ, Martin TR, et al American Thoracic Society. The ethical conduct of clinical research involving critically ill patients in the United States and Canada: principles and recommendations. Am J Respir Crit Care Med. 2004;170(12):1375-1384.
2. Freeman BD, Danner RL, Banks SM, Natanson C. Safeguarding patients in clinical trials with high mortality rates. Am J Respir Crit Care Med. 2001;164(2):190-192. (Pubitemid 34001279)
3. Davis N, Pohlman A, Gehlbach B, et al. Improving the process of informed consent in the critically ill. JAMA. 2003;289(15):1963-1968. (Pubitemid 37430228)
4. Luce JM. Research ethics and consent in the intensive care unit. Curr Opin Crit Care. 2003;9(6):540-544. (Pubitemid 37518656)
5. Luce JM. Is the concept of informed consent applicable to clinical research involving critically ill patients? Crit Care Med. 2003;31(suppl 3):S153-S160. (Pubitemid 36379560)
6. Silverman HJ, Luce JM, Lanken PN, et al NHLBI Acute Respiratory Distress Syndrome Clinical Trials Network (ARDSNet). Recommendations for informed consent forms for critical care clinical trials. Crit Care Med. 2005;33(4):867-882.
7. Barrett KA, Scales DC. Considering the vulnerabilities of surrogate decision-makers when obtaining consent for critical care research. Intensive Care Med. 2012;38(1):4-6.
8. Chenaud C, Merlani P, Verdon M, Ricou B. Who should consent for research in adult intensive care? Preferences of patients and their relatives: a pilot study. J Med Ethics. 2009;35(11):709-712.
9. Ciroldi M, Cariou A, Adrie C, et al; Famirea study group. Ability of family members to predict patient's consent to critical care research. Intensive Care Med. 2007;33(5):807-813. (Pubitemid 46675320)
10. Gong MN, Winkel G, Rhodes R, Richardson LD, Silverstein JH. Surrogate consent for research involving adults with impaired decision making: survey of Institutional Review Board practices . Crit Care Med. 2010;38(11):2146-2154.
11. Wendler D, Prasad K. Core safeguards for clinical research with adults who are unable to consent. Ann Intern Med. 2001;135(7):514-523. (Pubitemid 32923569)
12. Bosk CL. Obtaining voluntary consent for research in desperately ill patients. Med Care. 2002;40(9)(suppl): V64-V68.
13. Wendler D, Martinez RA, Fairclough D, Sunderland T, Emanuel E. Views of potential subjects toward proposed regulations for clinical research with adults unable to consent. Am J Psychiatry. 2002;159(4):585-591. (Pubitemid 34274940)
14. Karlawish J, Rubright J, Casarett D, Cary M, Ten Have T, Sankar P. Older adults' attitudes toward enrollment of noncompetent subjects participating in Alzheimer's research. Am J Psychiatry. 2009;166(2):182-188.
15. Kim SYH, Kim HM, McCallum C, Tariot PN. What do people at risk for Alzheimer disease think about surrogate consent for research? Neurology. 2005;65(9):1395-1401. (Pubitemid 41552768)
16. Pochard F, Azoulay E, Chevret S, et al. Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med. 2001;29(10):1983-1987.
17. Mehta S, Quittnat Pelletier F, Brown M, et al. Why substitute decision makers provide or decline consent for ICU research studies: a questionnaire study. Intensive Care Med. 2012;38(1):47-54.
18. Menon K, Ward RE, Gaboury I, et al. Factors affecting consent in pediatric critical care research. Intensive Care Med. 2012;38(1):153-159.
19. Boyd EA, Lo B, Evans LR, et al. "It's not just what the doctor tells me:" factors that influence surrogate decision-makers' perceptions of prognosis. Crit Care Med. 2010;38(5):1270-1275.
20. Glaser BG. The Discovery of Grounded Theory: Strategies for Qualitative research. London, England: Weidenfeld and Nicholson;1968.
21. Iltis A. Lay concepts in informed consent to biomedical research: the capacity to understand and appreciate risk. Bioethics. 2006;20(4):180-190. (Pubitemid 44035858)
22. McKinlay JB, Potter DA, Feldman HA. Non-medical influences on medical decision-making. Soc Sci Med. 1996;42(5):769-776. (Pubitemid 26067883)
23. Miller FG, Rosenstein DL. The therapeutic orientation to clinical trials. N Engl J Med. 2003;348(14):1383-1386. (Pubitemid 36384108)
24. Hampton T. Health research funding losing ground. JAMA. 2006;296(10):1219-1220. (Pubitemid 44394877)
25. Rusinova K, Pochard F, Kentish-Barnes N et al. Qualitative research: adding drive and dimension to clinical research. Crit Care Med. 2009;37(suppl 1):S140-S146.
26. Nelson JE, Puntillo KA, Pronovost PJ, et al. In their own words: patients and families define high-quality palliative care in the intensive care unit. Crit Care Med. 2010;38(3):808-818.
27. Egerod I, Christensen D, Schwartz-Nielsen KH, Agård AS. Constructing the illness narrative: a grounded theory exploring patients' and relatives' use of intensive care diaries. Crit Care Med. 2011;39(8):1922-1928.
28. Coppolino M, Ackerson L. Do surrogate decision makers provide accurate consent for intensive care research? Chest. 2001;119(2):603-612. (Pubitemid 32163776)