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• W2023165828 abstract "Communication is crucial to effective end-of-life decision making in the ICU.1Curtis JR White DB Practical guidance for evidence-based ICU family conferences.Chest. 2008; 134: 835-843Abstract Full Text Full Text PDF PubMed Scopus (301) Google Scholar Honest discussions about prognosis enable ethically appropriate, autonomous decisions. Families want to discuss prognosis, even when outcomes are uncertain.2Evans LR Boyd EA Malvar G et al.Surrogate decision-makers' perspectives on discussing prognosis in the face of uncertainty.Am J Respir Crit Care Med. 2009; 179: 48-53Crossref PubMed Scopus (164) Google Scholar Misconceptions can lead patients and families to choose treatments they might otherwise forego. Nonclinicians generally know little about interventions, such as CPR, unless given explanations and tend to overestimate therapeutic benefits.3Heyland DK Frank C Groll D et al.Understanding cardiopulmonary resuscitation decision making: perspectives of seriously ill hospitalized patients and family members.Chest. 2006; 130: 419-428Abstract Full Text Full Text PDF PubMed Scopus (147) Google Scholar, 4Diem SJ Lantos JD Tulsky JA Cardiopulmonary resuscitation on television. Miracles and misinformation.N Engl J Med. 1996; 334: 1578-1582Crossref PubMed Scopus (400) Google Scholar Unfortunately, a gap often separates what physicians know and what patients and families understand, raising unsettling questions about appropriate decision making.5Cox CE Martinu T Sathy SJ et al.Expectations and outcomes of prolonged mechanical ventilation.Crit Care Med. 2009; 37: 2888-2894Crossref PubMed Scopus (241) Google Scholar Poor communication explains the gap somewhat. Prognosis is discussed inconsistently, and many physicians lack communication skills or withhold bad news in misguided efforts to sustain hope.1Curtis JR White DB Practical guidance for evidence-based ICU family conferences.Chest. 2008; 134: 835-843Abstract Full Text Full Text PDF PubMed Scopus (301) Google Scholar, 6White DB Engelberg RA Wenrich MD Lo B Curtis JR Prognostication during physician-family discussions about limiting life support in intensive care units.Crit Care Med. 2007; 35: 442-448Crossref PubMed Scopus (136) Google Scholar, 7Schapira L Butow P Brown R Boyle F Pessimism is no poison.J Clin Oncol. 2010; 28: 705-707Crossref PubMed Scopus (12) Google Scholar Psychologic distress, exacerbated by sleep deprivation and stress, may undermine patients' and families' efforts to process information.8Pochard F Azoulay E Chevret S French FAMIREA Group 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: 1893-1897Crossref PubMed Scopus (525) Google Scholar Factors related to ethnicity, culture, language, and religion may pose additional challenges.9Kagawa-Singer M Blackhall LJ Negotiating cross-cultural issues at the end of life: “You got to go where he lives”.JAMA. 2001; 286: 2993-3001Crossref PubMed Scopus (413) Google Scholar, 10Lo B Ruston D Kates LW Working Group on Religious and Spiritual Issues at the End of Life et al.Discussing religious and spiritual issues at the end of life: a practical guide for physicians.JAMA. 2002; 287: 749-754Crossref PubMed Scopus (238) Google Scholar Race and religion have a powerful influence on decision making.9Kagawa-Singer M Blackhall LJ Negotiating cross-cultural issues at the end of life: “You got to go where he lives”.JAMA. 2001; 286: 2993-3001Crossref PubMed Scopus (413) Google Scholar, 10Lo B Ruston D Kates LW Working Group on Religious and Spiritual Issues at the End of Life et al.Discussing religious and spiritual issues at the end of life: a practical guide for physicians.JAMA. 2002; 287: 749-754Crossref PubMed Scopus (238) Google Scholar, 11Volandes AE Paasche-Orlow M Gillick MR et al.Health literacy not race predicts end-of-life care preferences.J Palliat Med. 2008; 11: 754-762Crossref PubMed Scopus (181) Google Scholar, 12Loggers ET Maciejewski PK Paulk E et al.Racial differences in predictors of intensive end-of-life care in patients with advanced cancer.J Clin Oncol. 2009; 27: 5559-5564Crossref PubMed Scopus (150) Google Scholar, 13Phelps AC Maciejewski PK Nilsson M et al.Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer.JAMA. 2009; 301: 1140-1147Crossref PubMed Scopus (314) Google Scholar African Americans tend to be less happy with end-of-life care and communication.14Welch LC Teno JM Mor V End-of-life care in black and white: race matters for medical care of dying patients and their families.J Am Geriatr Soc. 2005; 53: 1145-1153Crossref PubMed Scopus (181) Google Scholar Compared with whites, African Americans are more likely to choose aggressive interventions, such as ICU admission, and less likely to pursue palliation.11Volandes AE Paasche-Orlow M Gillick MR et al.Health literacy not race predicts end-of-life care preferences.J Palliat Med. 2008; 11: 754-762Crossref PubMed Scopus (181) Google Scholar, 12Loggers ET Maciejewski PK Paulk E et al.Racial differences in predictors of intensive end-of-life care in patients with advanced cancer.J Clin Oncol. 2009; 27: 5559-5564Crossref PubMed Scopus (150) Google Scholar African Americans are also less likely to receive the care they want, whether invasive or palliative, suggesting a major disconnect with physicians.12Loggers ET Maciejewski PK Paulk E et al.Racial differences in predictors of intensive end-of-life care in patients with advanced cancer.J Clin Oncol. 2009; 27: 5559-5564Crossref PubMed Scopus (150) Google Scholar Religion is often associated with preference for aggressive care,13Phelps AC Maciejewski PK Nilsson M et al.Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer.JAMA. 2009; 301: 1140-1147Crossref PubMed Scopus (314) Google Scholar although successfully attending to spiritual needs may help shift the focus to palliation.15Balboni TA Paulk ME Balboni MJ et al.Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death.J Clin Oncol. 2010; 28: 445-452Crossref PubMed Scopus (315) Google Scholar To date, insufficient attention has been paid to exploring how race and religion influence patients' and families' perceptions of illness. In this issue of CHEST (see page 59), Ford and colleagues16Ford D Zapka J Gebregziabher M Yang C Sterba K Factors associated with illness perception among critically ill patients and surrogates.Chest. 2010; 138: 59-67Abstract Full Text Full Text PDF PubMed Scopus (34) Google Scholar explore several factors that seem to impact how patients and families perceive critical illness. Using the validated Illness Perception Questionnaire-Revised (IPQ-R), the authors interviewed 23 critically ill patients and 77 surrogates. Remarkably, clinical measures had no independent impact on illness perception, but race and religion, as well as precritical illness quality of life and surrogate status, did. Compared with whites, African Americans perceived illness as less enduring and less serious, and having a lower emotional impact. African Americans also reported a greater sense of personal control over the outcome but, importantly, lower illness comprehension. Faith and religion were associated with more confidence in treatment efficacy. Compared with patients, surrogates reported lower illness comprehension and more emotional impact. A lower precritical illness quality of life was associated with a greater perception of chronicity and less confidence in treatment efficacy. This provocative article illuminates several underappreciated factors that influence end-of-life preferences in the ICU. The use of a validated questionnaire is a strength, as is the racially diverse sample typical of patients seeking care at ICUs in the United States. This is a small, single-site study; future research will need to confirm the findings in larger, multiinstitutional samples and generalize beyond the predominantly Evangelical Christian, English-speaking patients studied. Given the cross-sectional design, longitudinal data are needed to explore potential mechanisms linking race, religion, and other important factors to illness perceptions. Such exploration would be essential to determine if the associations found are causative or simply markers of other factors that influence perception. The study has important implications for clinical practice. Physicians in the ICU clearly need to consider how perceptions—not just the medical facts—affect how patients and families make decisions. Efforts to promote a more sophisticated understanding of race, culture, and religion would almost certainly enhance communication and decision making.9Kagawa-Singer M Blackhall LJ Negotiating cross-cultural issues at the end of life: “You got to go where he lives”.JAMA. 2001; 286: 2993-3001Crossref PubMed Scopus (413) Google Scholar, 10Lo B Ruston D Kates LW Working Group on Religious and Spiritual Issues at the End of Life et al.Discussing religious and spiritual issues at the end of life: a practical guide for physicians.JAMA. 2002; 287: 749-754Crossref PubMed Scopus (238) Google Scholar Although race, religion, and other factors clearly reflect how patients and families perceive illness, the authors are wise to acknowledge that physicians should not presume to know what patients think and want without careful exploration, education, and discussion.1Curtis JR White DB Practical guidance for evidence-based ICU family conferences.Chest. 2008; 134: 835-843Abstract Full Text Full Text PDF PubMed Scopus (301) Google Scholar, 9Kagawa-Singer M Blackhall LJ Negotiating cross-cultural issues at the end of life: “You got to go where he lives”.JAMA. 2001; 286: 2993-3001Crossref PubMed Scopus (413) Google Scholar, 11Volandes AE Paasche-Orlow M Gillick MR et al.Health literacy not race predicts end-of-life care preferences.J Palliat Med. 2008; 11: 754-762Crossref PubMed Scopus (181) Google Scholar, 16Ford D Zapka J Gebregziabher M Yang C Sterba K Factors associated with illness perception among critically ill patients and surrogates.Chest. 2010; 138: 59-67Abstract Full Text Full Text PDF PubMed Scopus (34) Google Scholar Effective, culturally competent communication may help to ensure that all patients, regardless of race or level of educational attainment, make informed choices and receive optimal end-of-life care. Finally, the study by Ford et al16Ford D Zapka J Gebregziabher M Yang C Sterba K Factors associated with illness perception among critically ill patients and surrogates.Chest. 2010; 138: 59-67Abstract Full Text Full Text PDF PubMed Scopus (34) Google Scholar raises important questions about the relationship between prognostic perceptions and autonomous decision making. To what extent is it problematic if patients' and families' perceptions differ from that of physicians? Is a consensus on prognosis necessary to ensure proper decision making? The answers to these questions are not simple. Certainly if communication were inadequate or trust were lacking, gaps in perception may reflect key misunderstandings that must be addressed. In other cases, differences in perception may simply reflect alternative perspectives, especially cultural and religious, that inform how patients and families perceive illness. An attempt to understand and respect alternative perspectives is likely to help physicians build rapport with patients and families.9Kagawa-Singer M Blackhall LJ Negotiating cross-cultural issues at the end of life: “You got to go where he lives”.JAMA. 2001; 286: 2993-3001Crossref PubMed Scopus (413) Google Scholar, 10Lo B Ruston D Kates LW Working Group on Religious and Spiritual Issues at the End of Life et al.Discussing religious and spiritual issues at the end of life: a practical guide for physicians.JAMA. 2002; 287: 749-754Crossref PubMed Scopus (238) Google Scholar In the end, it is not an incessant hammering of facts, but trust, compassion, insight, and effective communication that will bridge gaps and foster autonomous, mutually satisfactory, and mutually informed decisions." @default.
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