Daniel P Sulmasy

University of Chicago, Chicago, Illinois, United States

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Publications (143)833.84 Total impact

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    ABSTRACT: When Eleanor Roosevelt died in 1962, she was widely regarded as "the greatest woman in the world." In spite of her celebrity, or more likely because of it, she was forced to endure a protracted period of intense suffering and humiliation before dying. On critical analysis, her end-of-life care violated most of the ethical standards of care for the dying we hold dear today. However, caring for dying celebrities continues to be especially difficult. In at least some instances, the terminal care given to recently deceased world leaders has been no more consistent with these standards than that given to Eleanor Roosevelt over 50 years ago. Copyright © 2014 Elsevier Inc. All rights reserved.
    The American Journal of Medicine 11/2014; DOI:10.1016/j.amjmed.2014.11.006 · 5.30 Impact Factor
  • Daniel P Sulmasy
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    ABSTRACT: Genetic exceptionalism, the view that genomic information is different from other types of sensitive information and deserves exceptional types of protections, has been roundly criticized. However, the public still expresses special fears about the access others might have to their genomic information. In this article, it is argued that there may be a basis for the public perception that genomic information is special, even if it cannot be said that policies could or should be enacted to protect the privacy and confidentiality of genomic information that would be exceptional relative to the protections one would enact to protect other types of sensitive information. The special nature of genomic information lies in understanding that it is neither personal property nor mere information. A genome is, at one and the same time, a physical aspect of a person and information about that person. Genomic data are embodied information that partially constitutes as well as describes individuals and that connects them in physical ways to their ancestors and their relatives. All forms of privacy need to be protected, but some intimate aspects of our lives command special respect. To see a genome is more analogous to seeing a naked body than to seeing a social security number. This metaphor suggests that clinicians and investigators ought to respect the special concerns of patients regarding genomic information while not claiming that there are any exceptional measures one could take to protect genomic privacy. Suggestions are given for how this view might affect patient interactions, consent discussions, public policy, and public trust in genomic research and clinical genetics.Genet Med advance online publication 18 September 2014Genetics in Medicine (2014); doi:10.1038/gim.2014.111.
    Genetics in medicine: official journal of the American College of Medical Genetics 09/2014; DOI:10.1038/gim.2014.111 · 3.92 Impact Factor
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    ABSTRACT: U.S. medical scholarship and education regarding religion and spirituality has been growing rapidly in recent years. This rising interest, however, is not new; it is a renewal of significant interweavings that date back to the mid-20th century. In this Perspective, the authors draw attention to the little-known history of organized medicine's engagement with religion from 1961 to 1974. Relying on primary source documents, they recount the dramatic rise and fall of the Committee on Medicine and Religion (CMR) at the American Medical Association (AMA). At its height, there were state-level committees on medicine and religion in 49 states, the District of Columbia, and Puerto Rico, and there were county-level committees in over 800 county medical societies. Thousands of physicians attended annual conferences for clinicians and clergy, and direct outreach to patients included a film viewed by millions. The CMR arose in the context of rapid medical advances, the growth of professional chaplaincy, and concern for declining "humanism" in medicine-conditions with parallels in medicine today. The CMR was brought to a puzzling end in 1972 by the AMA's Board of Trustees. The authors argue that this termination was linked to the AMA's long and contentious debate on abortion. They conclude with the story's significance for today's explorations of the intersection of spirituality, religion, and medicine, focusing on the need for mutual respect, transparency, and dialogue around the needs of patients and physicians.
    Academic medicine: journal of the Association of American Medical Colleges 06/2014; DOI:10.1097/ACM.0000000000000370 · 2.34 Impact Factor
  • Article: Chronicity.
    Daniel P Sulmasy
    Journal of General Internal Medicine 11/2013; 29(4). DOI:10.1007/s11606-013-2700-1 · 3.42 Impact Factor
  • Daniel P Sulmasy
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    ABSTRACT: Every ethos implies a mythos in the sense that every systematic approach to ethics is inevitably based on some fundamental religious or religion-like story that gives answers to questions such as: Where did I come from? Where am I going? How am I to live? These narratives generally lay hidden beneath the plane of the interpersonal interactions that characterize all clinical encounters, but caring for patients who are approaching death brings them closer to the surface. For many patients and practitioners, these narratives will be expressed in explicitly religious language; others may invoke a sense of "immanent transcendence" that affords a spiritual perspective without requiring theism or notions of eternity. In caring for patients at the end of life, practitioners should strive to be more conscious of the narratives that undergird their own spiritual and ethical positions as well as seek to understand those of the patients they serve.
    Journal of pain and symptom management 06/2013; DOI:10.1016/j.jpainsymman.2013.03.016 · 2.42 Impact Factor
  • Michael L Kelly, Daniel P Sulmasy, Robert J Weil
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    ABSTRACT: Decision making for patients with spontaneous intracerebral hemorrhage (ICH) poses several challenges. Outcomes in this patient population are generally poor, prognostication is often uncertain, and treatment strategies offer limited benefits. Studies demonstrate variability in the type and intensity of treatment offered, which is attributed to clinical uncertainty and habits of training. Research has focused on new techniques and more stringent evidence-based selection criteria to improve outcomes and produce consensus around treatment strategies for patients with ICH. Such focus, however, offers little description of how ICH treatment decisions are made and how such decisions reflect patient preferences regarding medical care. A growing body of literature suggests that the process of decision making in ICH is laden with bias, value assumptions, and subjective impressions. Factors such as geography, cognitive biases, patient perceptions, and physician characteristics can all shape decision making and the selection of treatment. Such factors often serve as a barrier to providing patient-centered medical care. In this article, the authors review how surgical decision making for patients with ICH is shaped by these decisional factors and suggest future research pathways to study decision making in ICH. Such research efforts are important for establishing quality guidelines and pay-for-performance measures that reflect the preferences of individual patients and the contextual nature of medical decision making.
    Neurosurgical FOCUS 05/2013; 34(5):E1. DOI:10.3171/2013.2.FOCUS1319 · 2.14 Impact Factor
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    ABSTRACT: BACKGROUND: Cancer patients and their oncologists often report differing perceptions of consultation discussions and discordant expectations regarding treatment outcomes. CONNECT, a computer-based communication aid, was developed to improve communication between patients and oncologists. METHODS: CONNECT includes assessment of patient values, goals, and communication preferences; patient communication skills training; and a preconsultation physician summary report. CONNECT was tested in a 3-arm, prospective, randomized clinical trial. Prior to the initial medical oncology consultation, adult patients with advanced cancer were randomized to the following arms: 1) control; 2) CONNECT with physician summary; or 3) CONNECT without physician summary. Outcomes were assessed with postconsultation surveys. RESULTS: Of 743 patients randomized, 629 completed postconsultation surveys. Patients in the intervention arms (versus control) felt that the CONNECT program made treatment decisions easier to reach (P = .003) and helped them to be more satisfied with these decisions (P < .001). In addition, patients in the intervention arms reported higher levels of satisfaction with physician communication format (P = .026) and discussion regarding support services (P = .029) and quality of life concerns (P = .042). The physician summary did not impact outcomes. Patients with higher levels of education and poorer physical functioning experienced greater benefit from CONNECT. CONCLUSIONS: This prospective randomized clinical trial demonstrates that computer-based communication skills training can positively affect patient satisfaction with communication and decision-making. Measurable patient characteristics may be used to identify subgroups most likely to benefit from an intervention such as CONNECT. Cancer 2013. © 2013 American Cancer Society.
    Cancer 01/2013; 119(7). DOI:10.1002/cncr.27874 · 5.20 Impact Factor
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    ABSTRACT: Abstract Context: Unmet spiritual needs have been associated with decreased patient ratings of quality of care, satisfaction, and quality of life. Few instruments exist to measure spiritual needs particularly among non-English speaking patients in the U.S. Objective: To develop an internally consistent and reliable Chinese version of the Spiritual Needs Assessment for Patients (SNAP). Methods: The SNAP consists of 23 total items in 3 domains: psychosocial (n=5), spiritual (n=13), and religious (n=5). The Chinese SNAP was developed through a translation-back translation process followed by cognitive pre-testing. The instrument was then administered to a convenience sample of 30 ambulatory predominantly Mandarin speaking cancer patients in New York. We tested for internal consistency, test-retest reliability, and degree of association with the question "Have your spiritual needs been met?" Results: Mean participant age was 56 years, 70% had less than a high school education. Twenty three percent were Buddhist, 63% identified no religious affiliation, 83% described themselves as spiritual but not religious, 33% reported unmet spiritual needs, and 60% wanted help meeting their spiritual needs. The Cronbach's alpha for the total SNAP was 0.89. Test-retest correlation coefficient for the total SNAP=0.75. Unmet spiritual needs, as assessed through a single-item question, were not associated with higher SNAP scores in contrast to results of the English SNAP. Conclusion: The Chinese SNAP is an internally consistent and reliable instrument for measuring spiritual needs. The apparent lack of correlation between the SNAP score and the question on unmet spiritual needs may suggest that the SNAP captures patient needs considered by Westerners to be spiritual but that Chinese patients might not readily describe as spiritual.
    Journal of palliative medicine 10/2012; 15(12). DOI:10.1089/jpm.2012.0131 · 1.84 Impact Factor
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    ABSTRACT: PURPOSETo determine whether patients' expectations of benefit in early-phase oncology trials depend on how patients are queried and to explore whether expectations are associated with patient characteristics. PATIENTS AND METHODS Participants were 171 patients in phase I or II oncology trials in the United States. After providing informed consent for a trial but before receiving the investigational therapy, participants answered questions about expectations of benefit. We randomly assigned participants to one of three groups corresponding to three queries about expectations: frequency type, belief type, or both. Main outcomes were differences in expectations by question type and the extent to which expectations were associated with demographic characteristics, numeracy, dispositional optimism, religiousness/spirituality, understanding of research, and other measures.ResultsThe belief-type group had a higher mean expectation of benefit (64.4 of 100) than the combination group (51.6; P = .01) and the frequency-type group (43.1; P < .001). Mean expectations in the combination and frequency groups were not significantly different (P = .06). Belief-type expectations were associated with a preference for nonquantitative information (r = -0.19; 95% CI, -0.19 to -0.36), knowledge about research (r = -0.21; 95% CI, -0.38 to -0.03), dispositional optimism (r = 0.20; 95% CI, 0.01 to 0.37), and spirituality (r = 0.22; 95% CI, 0.03 to 0.38). Frequency-type expectations were associated with knowledge about clinical research (r = -0.27; 95% CI, -0.27 to -0.51). CONCLUSION In early-phase oncology trials, patients' reported expectations of benefit differed according to how patients were queried and were associated with patient characteristics. These findings have implications for how informed consent is obtained and assessed.
    Journal of Clinical Oncology 10/2012; 30(35). DOI:10.1200/JCO.2011.40.6587 · 17.88 Impact Factor
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    ABSTRACT: Debates persist about the relevance of "dignity" as an ethical concept in U.S. health care, especially in end-of-life care. To describe the attitudes and beliefs regarding the usefulness and meaning of the concept of dignity and to examine judgments about a clinical scenario in which dignity might be relevant. Two thousand practicing U.S. physicians, from all specialties, were mailed a survey. Main measures included physicians' judgments about an end-of-life clinical scenario (criterion variable), attitudes about the concept of dignity (predictors), and their religious characteristics (predictors). Responses were received from 1032 eligible physicians (54%). Nine (90%) of 10 physicians reported that dignity was relevant to their practice. After controlling for age, gender, region, and specialty, physicians who judged that the case patient had either some dignity or full dignity, and who agreed that dignity is given by a creator, were all positively associated with believing that the patient's life was worth living (odds ratio [OR] 10.2, 95% confidence interval [CI] 5.8-17.8, OR 20.5, 95% CI 11.4-36.8, OR 4.7, 95% CI 3.1-7.0, respectively). Respondents who strongly agreed that "all living humans have the same amount of dignity" were also more likely to believe that the patient's life was worth living (OR 1.8, 95% CI 1.2-2.7). Religious characteristics also were associated with believing that the case patient's life was worth living (OR 4.1, 95% CI 2.4-7.2, OR 3.2, 95% CI 1.6-6.3, OR 9.2, 95% CI 4.3-19.5, respectively). U.S. physicians view the concept of dignity as useful. Those views are associated with their judgments about common end-of-life scenarios in which dignity concepts may be relevant.
    Journal of pain and symptom management 07/2012; 44(3):331-9. DOI:10.1016/j.jpainsymman.2011.09.020 · 2.42 Impact Factor
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    ABSTRACT: Unmet spiritual needs have been associated with decreased patient ratings of quality of care, satisfaction, and quality of life. There is a need for a well-validated, psychometrically sound instrument to describe and measure spiritual needs. To develop a valid and reliable instrument to assess patients' spiritual needs. Instrument development was based on a literature review, clinical and pastoral evaluation, and cognitive pretesting (n=15 ambulatory cancer patients). Forty-seven ambulatory cancer patients completed cross-sectional and longitudinal surveys to test instrument validity and reliability. Internal reliability was assessed by Cronbach's α, test-retest reliability by Spearman's correlation coefficients, and construct validity by comparing instrument scores to a previously used single-item spiritual needs question. The Spiritual Needs Assessment for Patients (SNAP) comprises a total of 23 items in three domains: psychosocial (n=5), spiritual (n=13), and religious (n=5). Sixty percent of participants were white, 21% black, 13% Hispanic, and 6% Asian or other. Fifty-eight percent were Catholic, 13% Jewish, 11% Protestant, 2% Buddhist, 2% Muslim, and 2% Hindu. Sixty-eight percent described themselves as spiritual but not religious; 15% reported unmet spiritual needs; 19% wanted help meeting their spiritual needs. Cronbach's α for the total SNAP was 0.95, and for the subscales was psychosocial=0.74, spiritual=0.93, and religious needs=0.86. Test-retest correlation coefficients were total SNAP=0.69, psychosocial needs=0.51, spiritual needs=0.70, and religious needs=0.65. Participants reporting unmet spiritual needs had significantly higher mean scores on the total SNAP (66.3 vs. 49.4, P=0.03) and on the spiritual needs subscale (39.0 vs. 28.3, P=0.02). The results provide preliminary evidence that the SNAP is a valid and reliable instrument for measuring spiritual needs in a diverse patient population.
    Journal of pain and symptom management 06/2012; 44(1):44-51. DOI:10.1016/j.jpainsymman.2011.07.008 · 2.42 Impact Factor
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    Daniel P Sulmasy
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    ABSTRACT: The word 'dignity' is used in a variety of ways in bioethics, and this ambiguity has led some to argue that the term must be expunged from the bioethical lexicon. Such a judgment is far too hasty, however. In this article, the various uses of the word are classified into three serviceable categories: intrinsic, attributed, and inflorescent dignity. It is then demonstrated that, logically and linguistically, the attributed and inflorescent meanings of the word presuppose the intrinsic meaning. Thus, one cannot conclude that these meanings are arbitrary and unrelated. This categorization and logical and linguistic analysis helps to unravel what seem to be contradictions in discourse about dignity and bioethics, and provides a hierarchy of meaning that has potential normative implications.
    Medicine Health Care and Philosophy 03/2012; 16(4). DOI:10.1007/s11019-012-9400-1 · 0.91 Impact Factor
  • Daniel P Sulmasy
    Annals of Neurology 02/2012; 71(2):151-3. DOI:10.1002/ana.22661 · 11.91 Impact Factor
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    ABSTRACT: The disclosure of individual genetic results has generated an ongoing debate about which rules should be followed. We aimed to identify factors related to research participants' preferences about learning the results of genomic studies using their donated tissue samples. We conducted a cross-sectional survey of 279 patients from the United States and Spain who had volunteered to donate a sample for genomic research. Our results show that 48% of research participants would like to be informed about all individual results from future genomic studies using their donated tissue, especially those from the U.S. (71.4%) and those believing that genetic information poses special risks (69.7%). In addition, 16% of research participants considered genetic information to be riskier than other types of personal medical data. In conclusion, our study demonstrates that a high proportion of participants prefer to be informed about their individual results and that there is a higher preference among those research subjects who perceive their genetic information as riskier than other types of personal medical data.
    Journal of Empirical Research on Human Research Ethics 09/2011; 6(3):39-46. DOI:10.1525/jer.2011.6.3.39 · 1.49 Impact Factor
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    ABSTRACT: A clinical problem may arise when caring for patients or their surrogates who prefer continued aggressive care based on the belief that a miracle will occur, despite a clinician's belief that further medical treatment is unlikely to have any meaningful benefit. An evidence-based approach is provided for the clinician by breaking this complex clinical problem into a series of more focused clinical questions and subsequently answering them through a critical appraisal of the existing medical literature. Belief in miracles is found to be common in the United States and is an important determinant of how decisions are made for those with advanced illness. There is a growing amount of evidence that suggests end-of-life outcomes improve with the provision of spiritual support from medical teams, as well as with a proactive approach to medical decision making that values statements given by patients and family members.
    Journal of pain and symptom management 06/2011; 42(1):119-25. DOI:10.1016/j.jpainsymman.2011.03.008 · 2.42 Impact Factor
  • Daniel P Sulmasy
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    ABSTRACT: The phrase 'the value of life' is important in bioethics, particularly for those who hold the traditional views that life has intrinsic value and that the distinction between killing and allowing to die is valid. Ambiguities in the meaning of 'the value of life,' however, can lead to errors in medical ethical analysis by those who hold these traditional views. This essay notes three sources of such ambiguity: (1) three senses of the verb 'is,' (2) the difference between the transcendent and the transcendental, and (3) the difference between the transcendental and the empirical. On the basis of these distinctions, several conclusions are drawn: that the value of life is transcendental, not transcendent, both finite and priceless, that decisions to withhold or withdraw life-sustaining treatments are always judgments about the qualities of a person's life, so one cannot universally condemn "quality of life judgments," that the traditional distinction between killing and allowing to die tracks the distinction between the transcendental and the empirical, that "life itself" is not a benefit of treatment, and that foregoing treatments that are not futile can be consistent with respect for the value of life.
    Kennedy Institute of Ethics journal 06/2011; 21(2):181-99. DOI:10.1353/ken.2011.0006 · 1.21 Impact Factor
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    ABSTRACT: Surrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf. To evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making. Cross-sectional survey. Twenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total). Patients and family members completed the Decision Control Preferences (DCP) scale regarding patient preferences for family involvement in health care decisions using conscious and unconscious scenarios. Patient and family member agreement was 56% (29/52 dyads) for the conscious scenario (kappa 0.29) and 46% (24/52 dyads) for the unconscious scenario (kappa 0.15). Twenty-four family members identified the patient's preference as independent in the unconscious scenario, but six of these patients actually preferred shared decision making and six preferred reliant decision making. In the conscious scenario, preference for independent decision making was associated with higher odds of patient-family agreement (AOR 5.28, 1.07-26.06). In the unconscious scenario, cancer patients had a higher odds of agreement than ALS patients (AOR 3.86; 95% CI 1.02-14.54). Family members were often unable to correctly identify patient preferences for family involvement in end-of-life decision making, especially when patients desired that decisions be made using the best-interest standard. Clinicians and family members should consider explicitly eliciting patient preferences for family involvement in decision making. Additional research is still needed to identify interventions to improve family member understanding of patient preferences regarding the decision-making process itself.
    Journal of General Internal Medicine 04/2011; 26(8):881-6. DOI:10.1007/s11606-011-1717-6 · 3.42 Impact Factor
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    ABSTRACT: Patients who undergo implantation of left ventricular assist devices (LVADs) often have improved quality of life, but may eventually succumb to their heart failure and/or sustain LVAD-related complications. In end-of-life situations, decisions must be made about when to deactivate LVAD support. Previous studies have demonstrated that end-of-life planning, particularly with the use of advance directives (ADs), can clarify patients' end-of-life preferences when they are unable to speak for themselves. However, many patients do not have ADs, and among patients who do, the ADs may lack useful information on how to guide care surrogates and clinicians regarding patients' preferences on life-sustaining treatments. The authors retrospectively reviewed the charts of 68 patients with advanced heart failure (56 men [82%]; mean [standard deviation] age, 59.0 ± 12.2 years) who underwent LVAD implantation between March 2003 and January 2009. The indication for the LVAD was destination therapy in 36 (53%) patients and bridge to heart transplant in 32 (47%) patients. Overall, 32 (47%) patients had ADs of varying types; 25 (78%) ADs were completed before LVAD implantation. Although life-sustaining treatments (eg, tube feeding, cardiopulmonary resuscitation, mechanical ventilation, and hemodialysis) were mentioned, none explicitly mentioned the LVAD or withdrawal of LVAD support at the end of life. We hypothesize that if instructions regarding LVAD management in ADs are explicit, surrogate and clinician distress may decrease, and ethical dilemmas may be avoided.
    02/2011; 39(1):78-84. DOI:10.3810/hp.2011.02.377
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    IRB Ethics and Human Research 01/2011; 33(1):1-8. DOI:10.2307/23048285
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    ABSTRACT: A Consensus Conference sponsored by the Archstone Foundation of Long Beach, California, was held February 17–18, 2009, in Pasadena, California. The conference was based on the belief that spiritual care is a fundamental component of quality palliative care. This document and the conference recommendations it includes builds upon prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices and Conference proceedings.
    Medicina Paliativa 01/2011; 18(1):20–40. DOI:10.1016/S1134-248X(11)70006-4 · 0.16 Impact Factor

Publication Stats

3k Citations
833.84 Total Impact Points


  • 2009–2014
    • University of Chicago
      • Department of Medicine
      Chicago, Illinois, United States
    • Harvard Medical School
      Boston, Massachusetts, United States
  • 2011–2012
    • Northwestern University
      • Department of Medicine
      Evanston, IL, United States
    • University of Illinois at Chicago
      Chicago, Illinois, United States
    • Mayo Clinic - Rochester
      • Department of General Internal Medicine
      Rochester, Minnesota, United States
  • 2007–2012
    • Maimonides Medical Center
      Brooklyn, New York, United States
  • 2009–2011
    • Universidad de Navarra
      • Department of Biomedical Humanities
      Pamplona, Navarre, Spain
  • 2010
    • Mayo Foundation for Medical Education and Research
      Rochester, Michigan, United States
    • Clínica Universidad de Navarra
      Madrid, Madrid, Spain
  • 2002–2009
    • St. Vincent Hospital
      Green Bay, Wisconsin, United States
    • Saint Vincent Hospital
      Worcester, Massachusetts, United States
  • 1999–2009
    • New York Medical College
      New York City, New York, United States
  • 2003–2008
    • Fox Chase Cancer Center
      Philadelphia, Pennsylvania, United States
  • 1992–2008
    • Johns Hopkins University
      • • School of Nursing
      • • Department of Medicine
      Baltimore, MD, United States
  • 2006–2007
    • Saint Luke's Hospital (NY, USA)
      New York City, New York, United States
  • 1991–2005
    • Johns Hopkins Medicine
      • Department of Medicine
      Baltimore, Maryland, United States
  • 2004
    • Duke University
      Durham, North Carolina, United States
  • 2001–2003
    • St. Vincent Health
      Indianapolis, Indiana, United States
  • 1992–1999
    • Georgetown University
      • Center for Clinical Bioethics
      Washington, Washington, D.C., United States
  • 1998
    • University of Pittsburgh
      • Department of Medicine
      Pittsburgh, Pennsylvania, United States
  • 1996
    • University of Washington Seattle
      • Division of General Internal Medicine
      Seattle, WA, United States