Katherine Wasson

I Will Never Let That Be OK Again: Student Reflections on Competent Spiritual Care for Dying Patients

Purpose To examine medical students’ reflections on the spiritual care of a patient who has died so as to understand how students experienced this significant event and how they or their teams addressed patients’ spiritual needs. Method In 2010–2011, the authors gave third-year students at Loyola University Chicago Stritch School of Medicine an essay assignment, prompting them to reflect on the experience of the death of one of their patients. The authors analyzed the content of the essays using an iterative, multistep process. Three authors independently coded the essays for themes based on the competencies (developed by Puchalski and colleagues and reflected in the essay prompt) of communication, compassionate presence, patient care, and personal and professional development. The authors reached consensus through discussion. Results A salient theme in the students’ writings was awareness of their personal and professional development. Students reported being aware that they were becoming desensitized to the human dimension of care, and particularly to dying patients and their families. Students wished to learn to contain their emotions to better serve their patients, and they articulated a commitment to addressing patient and family needs. Students identified systemic fragmentation of patient care as a barrier to meeting patient needs and as a facilitator of provider desensitization. Conclusions Written student reflections are a rich source of data regarding the spiritual care of dying patients and their families. They provide insight into the personal and professional development of medical students and suggest that medical schools should support students’ formation.

Direct-to-consumer genomics and research ethics: should a more robust informed consent process be included?

An important issue raised in the article by Lee and Crawley (2009) is whether direct-to-consumer (DTC) genomics, specifically personal genome testing (PGT) should be considered research. The authors state that DTC genetic companies are creating new models of research where social networking tools will allow consumers to group themselves around particular diseases or conditions and participate directly in biomedical research. One hope is that such networking will speed the acquisition of knowledge about genomics. The United States federal regulations define research as including systematic investigation aimed at producing generalizeable knowledge (Emanuel 2003, 41). When scientists examine an individual’s DNA for the purpose of PGT, it could be assumed that they do it in a systematic manner, given the descriptions to consumers and results provided by companies. Not to conduct the analysis in a systematic manner could undermine the aims and reputation of the companies. The companies claim to base their tests on current scientific literature and single nucleotide polymorphisms (SNPs), or common genetic variants, identified in the field. They investigate either a wide range of SNPs or specific mutations associated with a disease, such as BRCA1 and BRCA2. Good research and scientific practice involves clear aims, protocols and interpretable results that are reproducible. Ideally it is peer reviewed and open to scrutiny at different stages in the process. Whether the specific genetic

Primary Care Patients’ Views, Attitudes, and Decision-Making Factors Regarding Direct-to-Consumer Personal Genome Testing: Results From a Qualitative Study

Background: Direct-to-consumer personal genome testing (PGT) is a relatively new service where thousands to millions of single nucleotide polymorphisms, or common genetic variants, are examined and variable risk estimates for diseases and conditions are given. Such genetic testing is available directly to the public and raises ethical, scientific, regulatory, and clinical issues. Limited empirical research exists about how primary care patients view PGT. The goal of this exploratory study was to assess the attitudes and views, decision-making factors, and ethical considerations of primary care patients about direct-to-consumer PGT. Methods: This qualitative study involved recruiting primary care patients from an urban academic medical center clinic and conducting four focus groups (n = 29). Participants were questioned about their views, attitudes, and decision-making considerations regarding direct-to-consumer PGT. Grounded theory methodology was used to analyze the data for categories that emerged from the focus group discussions. Results: Three primary categories emerged from the data analysis: (I) the worth of direct-to-consumer PGT; (II) motivations for testing; and (III) concerns about testing, including ethical issues. Participants reported that they were motivated to test by a desire for information about themselves and for their families, the potential for intervention and prevention of disease, and altruism. Concerns expressed included questions about the accuracy and reliability of this testing, interpretation of results, anticipated risks of revealing results, and ethical issues including confidentiality. Conclusions: This study describes in detail the decision-making considerations of primary care patients about direct-to-consumer PGT. Participants articulated motivations for and potential benefits of PGT, along with perceived concerns, risks, and ethical issues raised by such testing. The study highlights the need for further examination of whether and how these considerations influence decisions and actions of additional primary care populations.

Developing an Evaluation Tool for Assessing Clinical Ethics Consultation Skills in Simulation Based Education: The ACES Project

The American Society for Bioethics and Humanities has created a quality attestation (QA) process for clinical ethics consultants; the pilot phase of reviewing portfolios has begun. One aspect of the QA process which is particularly challenging is assessing the interpersonal skills of individual clinical ethics consultants. We propose that using case simulation to evaluate clinical ethics consultants is an approach that can meet this need provided clear standards for assessment are identified. To this end, we developed the Assessing Clinical Ethics Skills (ACES) tool, which identifies and specifies specific behaviors that a clinical ethics consultant should demonstrate in an ethics case simulation. The aim is for the clinical ethics consultant or student to use a videotaped case simulation, along with the ACES tool scored by a trained rater, to demonstrate their competence as part of their QA portfolio. The development and piloting of the tool is described.

Physician, Know Thyself: The Role of Reflection in Bioethics and Professionalism Education

Reflection in medical education is becoming more widespread. Drawing on our Jesuit Catholic heritage, the Loyola University Chicago Stritch School of Medicine incorporates reflection in its formal curriculum and co–curricular programs. The aim of this type of reflection is to help students in their formation as they learn to step back and analyze their experiences in medical education and their impact on the student. Although reflection is incorporated through all four years of our undergraduate medical curriculum, this essay will focus on three areas where bioethics faculty and medical educators have purposefully integrated reflection in the medical school, specifically within our bioethics education and professional development efforts: 1) in our three–year longitudinal clinical skills course Patient Centered Medicine (PCM), 2) in our co–curricular Bioethics and Professionalism Honors Program, and 3) in our newly created Physician’s Vocation Program (PVP).

Shouldn't Chaplains Be Handling Cases With Miracle Language?

Bibler, T., M. C. Shinall, Jr., and D. Stahl. 2018. Responding to those who hope for a miracle: Practices for clinical bioethicists. American Journal of Bioethics 18 (5):40–51. Cole, B., and K. Pargament. 1999. Re-creating your life: A spiritual/psychotherapeutic intervention for people diagnosed with cancer. Psychooncology 8 (5):395–407. doi:10.1002/(SICI)1099-1611 (199909/10)8:5<395::AID-PON408>3.0.CO;2-B.

Personal Narratives of Genetic Testing: Expectations, Emotions, and Impact on Self and Family

The stories in this volume shed light on the potential of narrative inquiry to fill gaps in knowledge, particularly given the mixed results of quantitative research on patient views of and experiences with genetic and genomic testing. Published studies investigate predictors of testing (particularly risk perceptions and worry); psychological and behavioral responses to testing; and potential impact on the health care system (e.g., when patients bring DTC genetic test results to their primary care provider). Interestingly, these themes did not dominate the narratives published in this issue. Rather, these narratives included consistent themes of expectations and looking for answers; complex emotions; areas of contradiction and conflict; and family impact. More narrative research on patient experiences with genetic testing may fill gaps in knowledge regarding how patients define the benefits of testing, changes in psychological and emotional reactions to test results over time, and the impact of testing on families.

Commentary on "Advance care planning and proxy decision making for patients with advanced Parkinson disease".

Proxy or surrogate decision making is an issue that arises regularly in hospitals and other healthcare facilities as patients age, become ill, and lose their capacity to make their wishes and choices known. End-of-life (EOL) decision making is stressful for families, who often fill the role of proxy decision makers, particularly if they do not know or do not have documentation of the patient’s wishes. The burden of trying to understand the patient’s condition, diagnosis, and prognosis, the medical jargon, and the treatment options is emotionally and psychologically weighty. Proxies may not have had conversations with the patient about his or her EOL wishes and, therefore, may be left to base choices on their sense of what the patient would have wanted or the proxy’s own values. What seems increasingly common is that physicians are trained to avoid being paternalistic at all costs; instead, they are encouraged to provide a menu of medical options from which the proxy is supposed to choose. In the worst-case scenario, this approach leaves the proxy having to wade through the choices without much guidance and with varying degrees of understanding and a feeling of being overwhelmed. The potential and actual guilt of choosing the ‘‘wrong’’ option is real and evident when dealing with these situations. In the best-case scenario, the physician, healthcare team, and proxy make the decision together in accordance with the patient’s values and known wishes. Too often in modern health care, however, it seems that this is not the case. In this issue of the Southern Medical Journal, Kwak and colleagues contribute to our limited knowledge of proxy decision making in the specific population of patients with advanced Parkinson disease (PD). Thirty-one percent of this patient population also had dementia. It is a group of people who is likely to be dependent on others to care for them and who may have difficulty expressing their wishes as the disease progresses. The authors focus on proxy decision makers, with the aim of examining what proxies choose and how closely those choices correlate to patients’ wishes. Although we know there is often a gap, little is known about this group of patients and their proxies. This study sample contained a high percentage of patients who had completed a living will (95%) and shared it with their proxy (91%); however, only 38% had shared it with their physician. Interestingly, in this sample, proxy EOL care choices were not generally consistent with the patient’s life-support choices. Proxies more often chose pain and symptom control only. One reason may have been that some patients wanted cardiopulmonary resuscitation (CPR) but not ventilator support, and these may not be easily predictable preferences consistent with their other EOL choices (eg, no ventilator, no feeding tubes). The authors speculate as to why patients indicate they want CPR and note that a higher proportion of patients who shared their advanced directive with a physician chose hospice and declined CPR or a feeding tube. This notable finding highlights the importance of EOL discussions involving the physician or a healthcare professional, who may have given the patient key information about outcomes that affected his or her choices. The study raises key questions about how to move forward in facilitating EOL decision making, particularly in a population affected by PD, which may be applicable to other patient groups as well. Further work on how to increase the correlation between patient and proxy choices needs to be done. In some ways, perhaps this gap is inevitable because patients do not always know what they would choose until they reach the point of needing to make a decision. Some patients who are against Invited Commentary