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Supporting information for: 2015 CBSSM Research Colloquium and Bishop Lecture (Lawrence O. Gostin, J.D., LL.D Hon.)
Natalie Bartnik, MPH, Research Associate, HBHE Genetics Research Group, UM School of Public Health: "Why, how and when oncologists disclose genome sequencing results in clinical practice"
Abstract: Integrating an individual’s clinical history with genome sequencing data can inform diagnostic and treatment strategies tailored to the patient’s mutational landscape. In oncology, precision medicine offers the additional opportunity to characterize novel gene targets for patients with cancer who lack known or viable targets. It is not known whether oncologists communicate sequencing results to patients, or how and why oncologists integrate sequencing profiles into clinical practice. In a survey of 43 oncologists who referred 111 patients to the MIONCOSEQ Study, we found that nearly a quarter of oncologists planned to make changes to their patient’s treatment based on genomic findings. Prominent barriers to the integration of sequencing results into clinical practice were a lack of findings with perceived clinical significance, as well as limitations in locally available clinical trials. The majority of physicians planned to communicate sequencing results to their patients, mostly via in-person clinic visits.
Michele Gornick, PhD, MICHR PTSP Postdoctoral Fellow, VA HSRD Fellow & CBSSM Research Investigator: "Information and deliberation make a difference: The public’s preferences for the return of secondary genomic findings"
Abstract: As genome sequencing becomes a part of clinical practice, how best to disclose sequencing results –including secondary findings-- raises significant issues. Expert consensus panels have been convened to provide recommendations, but what do members of the public want? In order to address this gap, we organized a deliberative democracy (DD) session to educate members of the public on genome sequencing, to engage them in dialogue about the benefits and risks of the clinical implementation of this technology, and to elicit their informed perspectives about policies governing the return of secondary findings. A significant shift in participants’ perspectives on the disclosure of adult onset conditions from the baseline survey, that remained stable after a month follow-up (response rate = 87%; Χ2(1, N=60) = 4.26, p =0.039), suggests the value of education and deliberation for the appreciation of the scientific and ethical complexities of genome sequencing.
Aaron Scherer, PhD, CBSSM Postdoctoral Fellow: "Elephants, Donkeys, and Medicine: Political Differences in Health Risk Perceptions and Adherence to Medical Recommendations"
The relationship between political ideology and health is often relegated to discussions of health care policy. But what if political ideology affects much more than health care policy preferences? I will discuss two studies that provide some initial evidence that political ideology influences our perceptions of health risks and adherence to medical recommendations. In one study examining risk communication strategies, political ideology was related to differences in perceptions of Ebola and influenza risk, as well as willingness to vaccinate against these two infectious diseases. In a second study examining beliefs in medical conspiracies, political ideology was related to differences in self-reported adherence to doctor’s recommendations and prescription use. The psychological differences between conservatives and liberals that may help illuminate why these differences exist will be discussed.
Stephanie Kukora, MD and Nathan Gollehon, MD, Fellows, Division of Neonatal-Perinatal Medicine, Department of Pediatrics, UM Mott Children’s Hospital: "Epidemiology of outpatient prenatal consultation: implications for decision-making and perinatal outcomes"
Abstract: Neonatologists provide anticipatory guidance and support decision-making for complicated pregnancies, in which poor/ambiguous prognostication can lead to over-/under-treatment. Referral to antenatal palliative care consultation (PCC) is not standard; little is known about the basis for referral, and their role in perinatal decision-making.
117 women had outpatient neonatology consultation, with decision-making for 146 fetuses with multiple anomalies/genetic, single major anomaly, or obstetric complications. 18(12%) were given a prognosis of uniform non-survival and 41(28%) had anticipated survival with intervention. Remaining fetuses were given unknown prognoses 87(60%), some qualified “likely survivable” 17(12%) or “likely poor” 33(23%). Most prognoses aligned with outcomes, though outcomes were better than predicted in 3(2%) infants and worse in 10(7%). Mismatches between prognosis and decision occurred in 10(7%) infants who were provided resuscitation despite “non-survival” or “likely poor” prognoses.
23 (19.7%) of the 117 mother/fetus pairs received antenatal PCC. Prognoses included: 11(48%) non-survivable, 11(48%) unknown but likely poor, 1(4%) survivable with surgical intervention. Fetal/neonatal outcome included: fetal demise 5(22%), in-hospital death 16(70%), survival to discharge 2(9%). 22 maternal/fetal pairs with 3(13%) non-survivable and 19(86%) likely poor prognoses were not referred, but had similar outcomes: fetal demise 4(18%), in-hospital death 15(68%), survival to discharge 3(14%). Those with PCC were more likely to choose comfort-care than those without (61% vs. 18%, p < 0.01). Of non-survivors, 94% with PCC died within 4 days while 27% without PCC received >14 days of intensive care.
We identified relatively few cases of mismatch between prognosis and outcome; however, rare cases of prognostic failure warrant caution. Although allowing parents to pursue aggressive neonatal care respects autonomy, it may delay rather than prevent death. Long-term outcomes with and without PCC were similar for infants with poor prognoses, though non-survivors with PCC were more likely to have a comfort care plan and shorter time to in-hospital death.
Minnie Bluhm, PhD, MPH, Assistant Professor, School of Health Sciences, Eastern Michigan University: "Oncologists' decisions about administering late chemotherapy: What makes it so difficult?"
Abstract: Background. An estimated 20-50% of incurable cancer patients receive chemotherapy in the last 30 days of life, although little data support this practice. Continued use of chemotherapy typically precludes hospice enrollment. It may also result in more symptoms, increased use of aggressive treatments, and worsening quality of life. Despite this, few studies have explored oncologists' rationales for administering chemotherapy during the last weeks of life. The purpose of this study is to examine factors that oncologists report influence their decisions about late chemotherapy.
Methods. In-depth individual interviews were conducted with 17 oncologists using a semi-structured interview guide. Interviews were audio-recorded and transcribed verbatim. Transcripts were coded and content analyzed for themes and patterns.
Results. Three key findings emerged. 1) Clinical factors drive oncologists’ late chemotherapy decisions when they point to clear treatment choices, along with patient preferences. When clinical factors are ambiguous, non-clinical factors become more salient. 2) Late chemotherapy is patient-driven. It is used to palliate physical and emotional symptoms and maintain patient hope, even when physical benefit is not expected. 3) Caring for dying patients is difficult and impacts oncologists and their treatment decisions. Difficulties also cited as influences favoring treatment include: emotional exhaustion, difficulty communicating about stopping or not starting chemotherapy, overwhelming sense of responsibility for life and death, feeling badly about the limits of oncology to heal, and prognostic uncertainty.
Conclusions. Findings reveal a nuanced understanding of why it can be so difficult for oncologists to refuse chemotherapy to patients near death. Doing so adds to the existing burden of caring for dying patients. Therefore, at times, oncologists prescribe chemotherapy to simply help everyone feel better, regardless of expected clinical benefits or costs. Future work is needed on the impact of caring for dying patients on oncologists and on supportive interventions that promote optimal treatment decisions.
Danielle Czarnecki, PhD Candidate, UM Department of Sociology: "Moral Women, Immoral Technologies: How Devout Women Negotiate Maternal Desires, Religion, and Assisted Reproductive Technologies"
Abstract: Catholicism is the most restrictive world religion in its position on assisted reproductive technologies (ARTs). The opposition of the Church, combined with the widespread acceptability of ARTs in the U.S., creates a potentially profound moral dilemma for those who adhere to Church doctrine. Drawing on interviews from 33 Catholic women, this study shows that devout women have different understandings of these technologies than non or less religious women. These differences are rooted in devout women’s position of navigating two contradictory cultural schemas (Sewell 1992) —“religious” and “secular”—regarding the meaning of reproductive technologies in the contemporary U.S. Religious schemas provide devout women with different cultural resources that allow them to develop strategies to avoid the use of ARTs. Yet they must still reckon with the ideal of biological parenthood. I show how devout women draw on religious doctrine to find value and meaning in their suffering , to move beyond biological motherhood, and to ultimately achieve a moral femininity. While religion increases the burden of reproduction for devout women, it also provides the cultural resources to resist the financial, emotional, and physical difficulties experienced by women who use ARTs.
Uchenna Ezeibe, MD, Resident Physician, UMHS Department of Pediatrics & Communicable Diseases: "Pediatric Ethics Consultation Service at a Tertiary Hospital: A Retrospective Review"
Abstract: Background: Published data about hospital ethics consultation services focus primarily on adult patients. There is little information on pediatric ethics consultations – specifically whether patient demographics were related to type and prevalence of consults.
Objective: To review recent ethics consults at a large children’s hospital and explore associations with patient demographics.
Design/Methods: We reviewed ethics consults between 7/1/2009 – 12/31/2013 at a Midwest children’s hospital. We used Armstrong Clinical Ethics Coding System 2013©, modified for pediatrics, to code consults. We collected data on patient race, age, and insurance status (private vs. public) as a proxy for socioeconomic status. We used Microsoft Excel 2013© to generate descriptive statistics.
Results:, approximately 321,713 inpatient visits, and 29 ethics consults were reviewed. Most consults (72.5%) concerned inpatients. Of these, 82% originated from 1 of 3 ICUs (neonatal, pediatric, and pediatric-cardiothoracic). The most common reasons for consultation were: 1) treatment-based decision-making (31%),); 2) end-of-life decisions (28%); & 3) substitute decision-making (24%). The mean patient age for treatment-based and substitute decision-making consults were similar at 6.8 and 7.9 years, respectively. Younger patients (mean age: 2.4 years) were involved in end-of-life dilemmas. Patients receiving consults differed from the general patient population in that fewer patients with consults were White (52% vs. 71%) and more were African-American (34.5% vs 9%). Approximately 76% of patients with ethics consults had public insurance compared to approximately 29% amongst all inpatient admissions.
Conclusion: In this single-center retrospective review, we found that African-Americans and patients with public insurance were over-represented in receipt of ethics consultations compared to the general patient population. We also found that dilemmas about end-of-life decisions were more common for younger children. Given our small numbers, strong conclusions cannot be drawn from this data. Nevertheless, our findings do point to areas where communication between family and medical team can be improved.