Daniel P Sulmasy

The University of Chicago Medical Center, Chicago, Illinois, United States

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Publications (157)1043.93 Total impact

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    ABSTRACT: Aims and Objectives The purpose of this study was to consider how fear and symptom experience are perceived in patients with heart failure at the end of life.Background Heart failure is a burdensome condition and mortality rates are high globally. There is substantive literature describing suffering and unmet needs but description of the experience of fear and the relationship with symptom burden is limited.DesignA convergent mixed methods design was used.Methods Data from the McGill Quality of Life Questionnaire (N = 55) were compared to data from in-depth interviews (N = 5).ResultsPatients denied fear when asked directly, but frequently referred to moments of being afraid when they were experiencing symptoms. In addition, patients reported few troublesome symptoms on the survey, but mentioned many more symptoms during interviews.Conclusions These data not only identify the relationship between psychological issues and symptom experience but also elucidate the benefit of a mixed method approach in describing such experiences from the perspective of the patient. Future research should examine relationships between and among symptom experience, fear and other psychological constructs across the illness trajectory.Relevance to Clinical PracticeConversations about the interaction of symptom burden and fear can lead to both a more robust assessment of symptoms and lead to patient centred interventions.
    Journal of Clinical Nursing 09/2015; 24(21). DOI:10.1111/jocn.12973 · 1.26 Impact Factor
  • Kyle E. Karches · Daniel P. Sulmasy ·
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    ABSTRACT: The 2010 guidelines regarding management of cardiovascular implantable electronic devices (CIEDs) conclude that patient requests to deactivate these devices at the end of life should be honored. Nevertheless, many clinicians and patients report feeling uncomfortable discontinuing such therapies, particularly pacemakers. If the principles of clinical ethics are followed, turning off CIEDs at the end of life is morally permissible. Clinicians managing CIEDs should discuss the option of deactivation with the patient at the time of implantation and be prepared to reopen the question as warranted by the patient's clinical course and respect for the patient's authentic values. Copyright © 2015 Elsevier Inc. All rights reserved.
    Cardiac electrophysiology clinics 06/2015; 7(3). DOI:10.1016/j.ccep.2015.05.012
  • Micah T Prochaska · Daniel P Sulmasy ·
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    ABSTRACT: Physician recommendations have historically been a part of shared decision making. Recent literature has challenged the idea that physician recommendations should be part of shared decision making at the end of life, particularly the making of recommendations to surrogates of incapacitated patients. Close examination of the studies and the available data on surrogate preferences for decisional authority at the end of life, however, provide an empirical foundation for a style of shared decision making that includes a physician recommendation. Moreover, there are independent ethical reasons for arguing that physician recommendations enhance rather than detract from shared decision making. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
    Journal of pain and symptom management 05/2015; 50(5). DOI:10.1016/j.jpainsymman.2015.05.004 · 2.80 Impact Factor
  • Kelly Wolenberg · Daniel Kim · Farr Curlin · Daniel Sulmasy ·

    Academic medicine: journal of the Association of American Medical Colleges 05/2015; 90(5):547. DOI:10.1097/ACM.0000000000000699 · 2.93 Impact Factor
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    ABSTRACT: National reports on end-of-life symptom management reveal a gap in the evidence regarding symptoms other than pain and studies of diseases other than cancer. This study examines the frequency and severity of symptoms and quality of life (QOL) in persons with advanced cancer, amyotrophic lateral sclerosis (ALS), and congestive heart failure (CHF).
    Applied Nursing Research 03/2015; DOI:10.1016/j.apnr.2015.03.005 · 0.73 Impact Factor
  • Daniel P Sulmasy · Lois Snyder Sulmasy ·
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    ABSTRACT: In their essay, “Clarifying Substituted Judgment: the Endorsed Life Approach,”1 Wendler and Phillips add to a growing body of literature that acknowledges what has been apparent to many clinicians and commentators for a long time: something is seriously wrong with the contemporary US approach to surrogate decision making. Their essay summarises background that has been more extensively reviewed elsewhere: the history of how we came to this impasse, and the many theoretical and empirical critiques of substituted judgement.2 Drawing on this background, they propose an alternative to substituted judgement that differs little from the Substituted Interests Model that we proposed in 2010,3 doing so, in part, by misrepresenting our published views. The overlap between their model and ours is befuddling, but by calling their approach an attempt to ‘clarify’ rather than replace the substituted judgement standard, they only further muddy the waters. The approach they advocate is so similar to our Substituted Interests Model that giving it a different name and calling it an ‘interpretation’ of substituted judgement will only wind up being confusing for surrogates, clinicians and policy makers. Their primary motivation seems to be to ‘save’ substituted judgement since it is so well established in law and bioethical education. After noting some of the many problems with substituted judgement, they nonetheless both propose retaining the name and advise asking the surrogate to provide ‘the decision the patient would make for herself, if competent.’ They give two reasons for this: (1) they believe this directive is a useful approximation of the standard they think is really the correct one, namely, to provide the decision most consistent with the life the patient seems to have endorsed for herself, and (2) they think substituted judgement has become so ensconced in policy and practice that it would … [Full text of this article]
    Journal of Medical Ethics 02/2015; 41(9). DOI:10.1136/medethics-2014-102503 · 1.51 Impact Factor
  • Daniel P Sulmasy · Christopher Brick · Philip A Mackowiak ·
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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; 128(4). DOI:10.1016/j.amjmed.2014.11.006 · 5.00 Impact Factor
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    Daniel Sulmasy · Beverly Moy ·

    Journal of Clinical Oncology 11/2014; 32(36). DOI:10.1200/JCO.2014.57.8716 · 18.43 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; 17(5). DOI:10.1038/gim.2014.111 · 7.33 Impact Factor
  • Daniel T Kim · Farr A Curlin · Kelly M Wolenberg · Daniel P Sulmasy ·
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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; 89(12). DOI:10.1097/ACM.0000000000000370 · 2.93 Impact Factor
  • Reshma Jagsi · Daniel P Sulmasy · Beverly Moy ·
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    ABSTRACT: The value of cancer care has emerged at the center of a national discourse on fiscal responsibility and resource allocation. The cost of cancer care is rising at a higher pace than any other area of health care. As we struggle to address this unsustainable rise in cancer expenditures, oncology providers are forced to examine our practice patterns and our contributions to the overall health care cost burden. This article provides an oncologist-centered examination of our duties to individual patients and how they may seem at odds with our duties to society. It also discusses how oncology providers can do their part to contain health care costs while honoring their professional obligation to do their best for each patient.
    05/2014; 34:e146-9. DOI:10.14694/EdBook_AM.2014.34.e146
  • Daniel Kim · Farr Curlin · Kelly Wolenberg · Daniel Sulmasy ·
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    ABSTRACT: The history commonly told of the relationship between modern medicine and religion is one of steady, even inevitable, separation rooted in the Enlightenment. The divorce between medicine and religion, it is thought, had become nearly total before a recent surge of interest in the spiritual and religious dimensions of health care. This narrative, however, misjudges a persistent sense of spiritual need in illness that medical practice, even today, is unable to entirely ignore. Relying on primary sources, we recount here the little known story of the rise and fall of the Committee on Medicine and Religion and the Department of Medicine and Religion at the American Medical Association between 1961 and 1974. Arising in a context of a widely perceived dehumanization of care and the emergence of new ethical dilemmas at the bedside-concerns with significant parallels today-the initiative garnered striking physician enthusiasm and achieved dramatic successes nationally before coming to a puzzling end in 1972. We argue that its demise was linked to the AMA's contentious internal debate on abortion, and conclude with a note of caution regarding the status of normative concerns in medicine's ongoing efforts to address the spiritual and religious dimensions of its practices.
    Perspectives in Biology and Medicine 01/2014; 57(3):393-414. DOI:10.1353/pbm.2014.0025 · 0.48 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; 46(3). DOI:10.1016/j.jpainsymman.2013.03.016 · 2.80 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 · 2.11 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 04/2013; 119(7). DOI:10.1002/cncr.27874 · 4.89 Impact Factor
  • Alan B Astrow · Rashmi K Sharma · Yiwu Huang · Yiquing Xu · Daniel P Sulmasy ·
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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 · 1.91 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 · 18.43 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 · 2.80 Impact Factor
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    Rashmi K Sharma · Alan B Astrow · Kenneth Texeira · Daniel P Sulmasy ·
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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 · 2.80 Impact Factor

Publication Stats

4k Citations
1,043.93 Total Impact Points


  • 2015
    • The University of Chicago Medical Center
      Chicago, Illinois, United States
  • 2009-2015
    • University of Chicago
      • Department of Medicine
      Chicago, Illinois, United States
  • 2011-2013
    • University of Illinois at Chicago
      Chicago, Illinois, United States
  • 2001-2009
    • St. Vincent Hospital
      Green Bay, Wisconsin, United States
  • 1999-2009
    • New York Medical College
      • Department of Medicine
      New York, New York, United States
    • Johns Hopkins Medicine
      • Department of Medicine
      Baltimore, MD, United States
  • 2008
    • St. Vincent Medical Center
      Bridgeport, Connecticut, United States
  • 2006-2008
    • Saint Luke's Hospital (NY, USA)
      New York, New York, United States
  • 2007
    • Johns Hopkins University
      • School of Nursing
      Baltimore, MD, United States
    • Maimonides Medical Center
      Brooklyn, New York, United States
  • 2001-2003
    • St. Vincent Health
      Indianapolis, Indiana, United States
  • 1992-1998
    • Georgetown University
      • Center for Clinical Bioethics
      Washington, Washington, D.C., United States