Wednesday, August 28, 2019

A difficult conversation: Delivering news of a fatal illness to one's own wife

A Difficult Conversation. Martin B. Wice. August 27, 2019. JAMA. 2019;322(8):727-728. doi:10.1001/jama.2019.11757

[Full text, references, etc., at the journal above]

In her late 50s, Cathy developed fatigue. Over the course of a few months, she began to take afternoon naps and fall asleep earlier than normal. Then, over a 2-week period, she gained 15 pounds. Overnight, her belly swelled full of fluid, and she appeared 7 months pregnant. The next day, Cathy's primary care physician sent her to the hospital emergency department for a CT scan of her abdomen and pelvis. As a physician myself seeing patients at another nearby hospital, I logged into the network computer and, with Cathy’s permission, reviewed her scan results with the emergency department physician over the phone. Cathy's imaging and subsequent peritoneal fluid were consistent with advanced ovarian cancer—to me, a death sentence. I had delivered poor prognoses many times during my career, so I took it upon myself to give Cathy the bad news and ensure that I would be with her during this difficult conversation. This was especially challenging because Cathy was no ordinary patient—she was my wife of 31 years.

I finished my rounds and quickly drove to the emergency department where Cathy was waiting. On the drive, questions rushed through my head. How do you tell the woman you love that this disease can be only temporarily contained with surgery and chemotherapy? How do you tell her that she will never see her children graduate from their respective professional schools, will never watch her children get married, will never meet her grandchildren, and will never enjoy her golden years? How do you tell your children that their mother will be gone in a few short years? How do I as a husband cope with the stress of caring for a wife severely compromised not only from her cancer but from the cancer treatments? How do I cope knowing that soon I will need to learn to live without my life partner, the love of my life, the person whom I and others consistently relied on for support?

Cathy would have known the answers to these questions. She was the one to whom friends, children of friends, and even her own children's classmates came for unbiased and compassionate advice. As a wife, she always provided support and direction. If I ever questioned her, she reminded me that agreeing with her demonstrated good judgment.

As a mother of twin boys, Cathy guided our children on their journey to becoming kind, giving, and productive adults. She was also their advocate. One of our sons struggled in school from a “central processing” hearing disorder because of which he could hear the sounds of speech but could not distinguish their meaning. Cathy supported him through a grueling therapy program and installed sound amplification systems in each of his classrooms so that he could hear his teachers' voices over the background noise. Cathy then went on to advocate for better diagnosis and treatment of all hearing impaired children in our community and had great success advocating for proper acoustics in each K-12 classroom in our area.

Cathy also supported my parents as if she were their own daughter. When my father developed Alzheimer disease, she helped care for him until his death. With our local Alzheimer Association, she created a handbook for hospitals on how to interact with patients with dementia, an endeavor that earned her the volunteer of the year award. When my mother had a stroke, Cathy cared for her in our home. Now, it was our turn to support, advocate for, and care for Cathy.

Once I arrived at the emergency department, I pulled myself together to have the most difficult conversation of my life. I called upon my training as a physician to deliver bad news: you assess the patient's medical, functional, emotional, and spiritual needs, as well as the patient’s family's needs. After weighing the pros and cons of each option, you determine the best approach to address these needs. You then sit down with the patient and family members and have a private, nonjudgmental, and supportive conversation. Speaking at eye level, you discuss the situation as partners. You pause and allow the information to sink in. You have a box of tissues at the ready. You offer a calming touch as appropriate. If and when the patient and family members are able to continue the discussion, you outline the various scenarios and the best outcomes. You pause again. You allow the patient and family to respond further. You address their concerns and questions. I had done this many times but never as both the doctor guiding the conversation and the family taking it in.

I sat at Cathy's side and held her hand. I called upon my extensive training to navigate this conversation, and then delivered the horrible news. “Your abdomen is filled with abnormal cells, cells that are from advanced ovarian cancer,” I said, still overwhelmed and trying to contain my own shock. I paused to give both her and me time to process the information. As husband and wife, we shed tears together. I promised to always advocate for her, always seek out the best possible care for her, and always be there for her. The gynecologic oncologist arrived, and we discussed the treatment plan. I vacillated between 2 worlds: at times, a physician; at times, a worried husband and now caregiver. This would be a twilight zone I would never leave. We shared the initial shock of her diagnosis the remainder of the night. Neither one of us had much sleep. We did what we always did in a crisis: we held each other tight for mutual support.

The next day, we celebrated our wedding anniversary with Cathy undergoing a bowel prep for the imminent tumor debulking procedure. Being board-certified in both internal medicine as well as physical medicine and rehabilitation and with official orders from her oncologist, I organized a customized cancer rehabilitation program for Cathy. And I kept my promise. I supported Cathy through her initial surgery and then through her multiple cycles of chemotherapy and its debilitating consequences: the fatigue, low blood counts and multiple transfusions, pneumonias and urinary tract infections, recurrent nausea and vomiting, hair loss, painful peripheral neuropathy, edema, and “chemo brain.” She lost strength, balance, hearing, renal function, mobility, and she lost her way of life.

As a husband, I provided her emotional support to counteract her frustrations, fears, and depression. I provided physical support when necessary, helping her bathe, dress, stand, and walk. When I could, I took her to chemotherapy. When others took her, I would visit her in the outpatient cancer center. When she was hospitalized, I would spend the night with her. Later, when she lost all bowel function, I connected her to intravenous fluids each morning and night. When her liver stopped working altogether, I took her home to die in a familiar setting, surrounded by her immediate family. Cathy passed away 2 days later, 3 and a half years after her initial diagnosis, with her sons and me at her bedside.

In this time of challenge, I found inspiration in these words by philosopher John O’Donohue1:

    When the reverberations of shock subside in you,
    May grace come to restore you to balance.
    May it shape a new space in your heart
    To embrace this illness as a teacher
    Who has come to open your life to new worlds.

I have grown a great deal in my “new world.” I rebalanced my life during Cathy’s illness and after her death. She and I spent our remaining time together to the fullest, and I have since continued living each day as if it is my last. I developed a better appreciation for relationships, the wonders of nature, and my connection to the rest of the world. There is new space in my heart that has allowed me to deepen established and new relationships. My love and support for our children increased, as I did my best to compensate for the love and support that Cathy had so generously given in life. In her final days, Cathy told me to find someone new to share my life, and I did. Cathy’s illness taught me that the challenges of disease can enhance people’s lives, and I am grateful for this lesson in my own.

On a professional level, Cathy’s illness strengthened my empathy for and commitment to patients and their families at intense times of need. Each time I give bad news, I am transported back to the emergency department with Cathy. I not only relive the delivery of Cathy’s cancer diagnosis; I relive the shock of just having received it. I will never forget being caught in the world of a physician, a loving husband, and a caregiver. My new tripartite identity may not be a perspective I anticipated but is one that has enhanced the quality of care I provide.

With her diagnosis, Cathy and I were forced to acknowledge that life is limited, which gave our lives and the lives around us so much more meaning. This is a legacy Cathy gave to me. No difficult conversation can ever replace this.

...
Additional Information: I thank Elizabeth Mueller, BS, Elise Alspach, PhD, and Kathleen Schoch, PhD, for editorial assistance and feedback in association with InPrint: A Scientific Editing Network at Washington University in St Louis. None were compensated beyond their usual salary. I also thank my son for allowing me to share this story.

Proximity (Mis)perception: Public Awareness of Nuclear, Refinery, and Fracking Sites

Proximity (Mis)perception: Public Awareness of Nuclear, Refinery, and Fracking Sites. Benjamin A. Lyons, Heather Akin, Natalie Jomini Stroud. Risk Analysis, August 27 2019. https://doi.org/10.1111/risa.13387

Abstract: Whether on grounds of perceived safety, aesthetics, or overall quality of life, residents may wish to be aware of nearby energy sites such as nuclear reactors, refineries, and fracking wells. Yet people are not always accurate in their impressions of proximity. Indeed, our data show that only 54% of Americans living within 25 miles of a nuclear site say they do, and even fewer fracking‐proximal (30%) and refinery‐proximal (24%) residents respond accurately. In this article, we analyze factors that could either help people form more accurate perceptions or distort their impressions of proximity. We evaluate these hypotheses using a large national survey sample and corresponding geographic information system (GIS) data. Results show that among those living in close proximity to energy sites, those who perceive greater risk are less likely to report living nearby. Conversely, social contact with employees of these industries increases perceived proximity regardless of actual distance. These relationships are consistent across each site type we examine. Other potential factors—such as local news use—may play a role in proximity perception on a case‐by‐case basis. Our findings are an important step toward a more generalizable understanding of how the public forms perceptions of proximity to risk sites, showing multiple potential mechanisms of bias.

1 INTRODUCTION

Living near sites such as nuclear reactors, refineries, and fracking wells can cause anxiety. Sites like these can pose high‐magnitude risks to human health, although the likelihood is low (e.g., Bertazzi, Pesatori, Zocchetti, & Latocca, 1989; Mitka, 2012; Vesely & Rasmuson, 1984). The proximity of such sites to one's residence can factor into important life decisions like home ownership or beginning a family (Boyle & Kiel, 2001; Doyle et al., 2000). The not‐in‐my‐backyard (NIMBYism) phenomenon, in which locals oppose new development, is a manifestation of such concerns (Lima, 2004; Lima & Marques, 2005). In addition, living near these sites may be undesirable to some solely on aesthetic grounds (Kiel & McClain, 1995). There also are desirable consequences from knowing that one lives near a particular site. For instance, this knowledge can lead residents to develop plans of action in case of complications or emergencies (Cuite, Schwom, & Hallman, 2016; Perko, ┼Żeleznik, Turcanu, & Thijssen, 2012; Zeigler, Brunn, & Johnson, 1981).

However, people are not always correct in their impressions of whether they live near energy sites. Indeed, our data show that only 54% of Americans living within 25 miles of a nuclear site say they do, and even fewer fracking‐proximal (30%) and refinery‐proximal (24%) residents respond accurately. There is ample evidence that factors beyond reality affect beliefs about one's surroundings, and of proximity, in particular (Cesario & Navarrete, 2014; Craun, 2010; Giordano, Anderson, & He, 2010; Howe, 1988). In this article, we analyze what factors correlate with perceived proximity to three distinct types of sites: nuclear sites, refineries, and fracking wells. We model how orientations toward information (risk perception, general science knowledge) and access to sources of information (news consumption, social contact) relate with perceptions of proximity.

As outlined shortly, each of these factors can lead to correct beliefs about one's proximity to energy sites. At the same time, they also can have a distorting effect, making people believe that they live closer (or farther) than they do in actuality. Watching local news, for instance, could yield a better understanding of where these sites exist, or could correlate with the belief that these sites are more proximate than they are in reality. We evaluate perceived proximity using a large national survey sample and corresponding GIS data that allow us to know exactly how proximate each respondent is from one of these sites.

Examining perceived proximity across three different types of sites allows us to move research on proximity perception forward. We find that risk perception and social contact are consistently associated with proximity misperception. However, our results show that it is not the case that these factors solely promote correct or incorrect beliefs. Rather, context—in this case, actual distance—is key. Dependent on actual distance, factors like risk perception and social contact can increase the probability that one's reported proximity is accurate for some, but increase the probability that one inaccurately reports that one lives nearby for others. Ultimately, our findings illuminate barriers to successful information campaigns, and potential ways to overcome them.

Science teams' impact is predicted more by the lower-citation rather than the higher-citation members; teams tend to assemble among individuals with similar citation impact in all fields of science and patenting

Decoding team and individual impact in science and invention. Mohammad Ahmadpoor and Benjamin F. Jones. Proceedings of the National Academy of Sciences, July 9, 2019 116 (28) 13885-13890. https://doi.org/10.1073/pnas.1812341116

Significance: Scientists and inventors increasingly work in teams. We track millions of individuals across their collaboration networks to help inform fundamental features of team science and invention and help solve the challenge of assessing individuals in the team production era. We find that in all fields of science and patenting, team impact is weighted toward the lower-impact rather than higher-impact team members, with implications for the output of specific teams and team assembly. In assessing individuals, our index substantially outperforms existing measures, including the h index, when predicting paper and patent outcomes or when characterizing eminent careers. The findings provide guidance to research institutions, science funders, and scientists themselves in predicting team output, forming teams, and evaluating individual impact.

Abstract: Scientists and inventors increasingly work in teams, raising fundamental questions about the nature of team production and making individual assessment increasingly difficult. Here we present a method for describing individual and team citation impact that both is computationally feasible and can be applied in standard, wide-scale databases. We track individuals across collaboration networks to define an individual citation index and examine outcomes when each individual works alone or in teams. Studying 24 million research articles and 3.9 million US patents, we find a substantial impact advantage of teamwork over solo work. However, this advantage declines as differences between the team members’ individual citation indices grow. Team impact is predicted more by the lower-citation rather than the higher-citation team members, typically centering near the harmonic average of the individual citation indices. Consistent with this finding, teams tend to assemble among individuals with similar citation impact in all fields of science and patenting. In assessing individuals, our index, which accounts for each coauthor, is shown to have substantial advantages over existing measures. First, it more accurately predicts out-of-sample paper and patent outcomes. Second, it more accurately characterizes which scholars are elected to the National Academy of Sciences. Overall, the methodology uncovers universal regularities that inform team organization while also providing a tool for individual evaluation in the team production era.

Keywords: team science collaboration prediction team organization

Does Media Literacy Help Identification of Fake News? Information Literacy Helps, but Other Literacies Don’t

Does Media Literacy Help Identification of Fake News? Information Literacy Helps, but Other Literacies Don’t. S. Mo Jones-Jang, Tara Mortensen, Jingjing Liu. American Behavioral Scientist, August 28, 2019. https://doi.org/10.1177/0002764219869406

Abstract: Concerns over fake news have triggered a renewed interest in various forms of media literacy. Prevailing expectations posit that literacy interventions help audiences to be “inoculated” against any harmful effects of misleading information. This study empirically investigates such assumptions by assessing whether individuals with greater literacy (media, information, news, and digital literacies) are better at recognizing fake news, and which of these literacies are most relevant. The results reveal that information literacy—but not other literacies—significantly increases the likelihood of identifying fake news stories. Interpreting the results, we provide both conceptual and methodological explanations. Particularly, we raise questions about the self-reported competencies that are commonly used in literacy scales.

Keywords: fake news, media literacy, information literacy, digital literacy, news literacy, misinformation, disinformation

Gangestad et al. (this issue) recently published alternative analyses of our open data & state that women show ovulatory shifts in preferences for men’s bodies; we think the results are not robust

Penke, Lars, Julia Stern, Ruben C. Arslan, and Tanja M. Gerlach. 2019. “No Robust Evidence for Cycle Shifts in Preferences for Men's Bodies in a Multiverse Analysis: A Response to Gangestad Et Al. (2019).” PsyArXiv. August 28. doi:10.31234/osf.io/pdsuy

Abstract: Gangestad et al. (this issue) recently published alternative analyses of our open data to investigate whether women show ovulatory shifts in preferences for men’s bodies. They argue that a significant three-way interaction between log-transformed hormones, a muscularity component, and women’s relationship status provides evidence for the ovulatory shift hypothesis. Their conclusion is opposite to the one we previously reported (J├╝nger et al., 2018). Here, we provide evidence that Gangestad et al.’s differing conclusions are contaminated by overfitting, clarify reasons for deviating from our preregistration in some aspects, discuss the implications of data-dependent re-analysis, and report a multiverse analysis which provides evidence that their reported results are not robust. Further, we use the current debate to contrast the risk of prematurely concluding a null effect against the risk of shielding hypotheses from falsification. Finally, we discuss the benefits and challenges of open scientific practices, as contested by Gangestad et al., and conclude with implications for future studies.

No Robust Evidence for Cycle Shifts in Preferences for Men's Bodies in a Multiverse Analysis


Results bolster the small body of literature showing that flashbulb memories are subject to reconstructive processes & suggest that memories decay further between 3 & 5 months after events

Krackow, E., Deming, E., Longo, A., & DiSciullo, V. (2019). Memories of learning the news of the 2016 U.S. presidential election results. Psychology of Consciousness: Theory, Research, and Practice, http://dx.doi.org/10.1037/cns0000201

Abstract: The current study examined the consistency of flashbulb memories for the 2016 U.S. presidential election outcome by comparing a Time 1 memory that was obtained after the expected point of memory consolidation to a Time 2 memory obtained within a delay in which memories were expected to remain consistent based on the majority of literature. Despite expected consistency, narrative reports showed substantial change and several specific question responses showed a substantial range of change from Time 1 to Time 2. Changes in response to specific questions correlated significantly with the tendency to provide new information in the Time 2 narrative. Emotional determinants (feelings about the election result outcome) and emotion regulation abilities did not predict consistency of memories. Participant stress ratings showed a small but significant negative correlation with change in memory (greater stress = greater omission of information). These results bolster the small body of literature showing that flashbulb memories are subject to reconstructive processes and combined with other results (Krackow, Lynn, & Payne, 2005), they suggest that memories may decay further between 3 and 5 months following an event.