LaVera M. Crawley

Incorporating palliative care into primary care education

SummaryThe confluence of enhanced attention to primary care and palliative care education presents educators with an opportunity to improve both (as well as patient care) through integrated teaching. Improvements in palliative care education will have benefits for dying patients and their families, but will also extend to the care of many other primary care patients, including geriatric patients and those with chronic illnesses, who make up a large proportion of the adult primary care population. In addition, caring for the dying, and teaching others to carry out this task, can be an important vehicle for personal and professional growth and development for both students and their teachers.

Perceived Medical Discrimination and Cancer Screening Behaviors of Racial and Ethnic Minority Adults

Background: Discrimination has been shown as a major causal factor in health disparities, yet little is known about the relationship between perceived medical discrimination (versus general discrimination outside of medical settings) and cancer screening behaviors. We examined whether perceived medical discrimination is associated with lower screening rates for colorectal and breast cancers among racial and ethnic minority adult Californians. Methods: Pooled cross-sectional data from 2003 and 2005 California Health Interview Survey were examined for cancer screening trends among African American, American Indian/Alaskan Native, Asian, and Latino adult respondents reporting perceived medical discrimination compared with those not reporting discrimination (n = 11,245). Outcome measures were dichotomous screening variables for colorectal cancer among respondents ages 50 to 75 years and breast cancer among women ages 40 to 75 years. Results: Women perceiving medical discrimination were less likely to be screened for colorectal [odds ratio (OR), 0.66; 95% confidence interval (95% CI), 0.64-0.69] or breast cancer (OR, 0.52; 95% CI, 0.51-0.54) compared with women not perceiving discrimination. Although men who perceived medical discrimination were no less likely to be screened for colorectal cancer than those who did not (OR, 1.02; 95% CI, 0.97-1.07), significantly lower screening rates were found among men who perceived discrimination and reported having a usual source of health care (OR, 0.30; 95% CI, 0.28-0.32). Conclusions: These findings of a significant association between perceived racial or ethnic-based medical discrimination and cancer screening behaviors have serious implications for cancer health disparities. Gender differences in patterns for screening and perceived medical discrimination warrant further investigation. (Cancer Epidemiol Biomarkers Prev 2008;17(8):1937–44)

Research 2.0: Social Networking and Direct-To-Consumer (DTC) Genomics

The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information (PGI) direct-to-consumers. Companies such as 23andme (Mountain View, CA) and Navigenics (Foster City, CA) are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking business ventures that market the science of the personal genome illustrates the new trend in collaborative science. In addition to fostering a consumer empowerment movement, it promotes the trend of democratizing information—openly sharing of data with all interested parties, not just the biomedical researcher—for the purposes of pooling data (increasing statistical power) and escalating the innovation process. This target article discusses the need for new approaches to studying DTC genomics using social network analysis to identify the impact of obtaining, sharing, and using PGI. As a locus of biosociality, DTC personal genomics forges social relationships based on beliefs of common genetic susceptibility that links risk, disease, and group identity. Ethical issues related to the reframing of DTC personal genomic consumers as advocates and research subjects and the creation of new social formations around health research may be identified through social network analysis.

Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: Inconsistencies in standards across major pediatric transplant centers

Abstract:  Children with NDD present for organ transplant evaluation, but the role of NDD as a listing criterion itself is poorly described. Therefore, we sought to investigate how major pediatric solid organ transplant programs use NDD as a criterion in their listing decisions. We developed a survey that was sent via post to active pediatric solid organ transplant programs across the United States investigating transplant listing decision‐making for neurodevelopmentally delayed children. Respondents were medical/surgical directors and transplant coordinators. Descriptive statistics summarize the findings. Programs inconsistently use NDD in listing decisions. Thirty‐nine percent of programs stated that they “rarely” or “never” consider NDD in their decisions, whereas 43% of programs “always” or “usually” do. Sixty‐two percent of programs report that informal processes guide their use of NDD, and no programs describe their process as “formal, explicit, and uniform.” The degree of delay is an additional source of discordance among programs, with 14% of programs reporting mild or moderate NDD as a relative contraindication to listing and 22% reporting that NDD was “irrelevant” to the listing decision. The use of NDD in pediatric solid organ transplant listing decisions is varied and inconsistent across active programs.

Qualitative Methods in End-of-Life Research: Recommendations to Enhance the Protection of Human Subjects

Qualitative research has the potential to contribute important new knowledge to care near the end of life, but research is often hampered by questions about how best to protect dying patients and their family members who serve as research subjects. Due to lack of familiarity with the techniques of ethnographic or observational research, as well as concerns about the vulnerability of the dying, members of Institutional Review Boards (IRBs) are often unable to evaluate the benefits and potential harms of studies. In addition, policies derived from standards based on interventional medical research or clinical trials may be applied inappropriately. We offer comprehensive recommendations aimed at improving the translation of human subjects guidelines into meaningful protections for subjects in qualitative studies, including education for IRBs. Policies must be flexible and should be guided by empirical findings documenting the actual impact of research participation, rather than a priori assumptions about patient vulnerability. Sensitive topics, such as drug use, may require added protections.

Are cancer registries unconstitutional

Population-based cancer registration, mandated throughout the United States, is central to quantifying the breadth and impact of cancer. It facilitates research to learn what causes cancer to develop and, in many cases, lead to death. However, as concerns about privacy increase, cancer registration has come under question. Recently, its constitutionality was challenged on the basis of 1) the vagueness of statutory aims to pursue public health versus the individual privacy interests of cancer patients, and 2) the alleged indignity of ones individual medical information being transmitted to government authorities. Examining cancer registry statutes in states covered by the US National Cancer Institutes SEER Program and the US Centers for Disease Control and Preventions National Program of Cancer Registries, we found that cancer registration laws do state specific public health benefits, and offer reasonable limits and safeguards on the governments possession of private medical information. Thus, we argue that cancer registration would survive constitutional review, is compatible with the civil liberties protected by privacy rights in the U.S., satisfies the conditions that justify public health expenditures, and serves human rights to enjoy the highest attainable standards of health, the advances of science, and the benefits of government efforts to prevent and control disease.

The Language of Hope: Therapeutic Intent in Stem-Cell Clinical Trials

Electronic registries for clinical trials present an opportunity for miscommunication of benefits and risks to potential subjects. We explored early phase clinical trials registered on the National Library of Medicines ClinicalTrials.gov for inappropriate language patterns (terms and statements) that could convey therapeutic intent. We sampled early-phase heart disease clinical trial records involving stem cells registered on Clincaltrials.gov between April 24, 2004, and September 18, 2008, and randomly selected heart disease drug trials from the same period for comparison. Trial sponsorship and location were coded. Textual data were extracted from titles, purpose, outcome measures, and detailed description statements and coded for readability and the presence of therapeutic language. Content and multiple correspondence analyses were employed to explore language patterns suggestive of therapeutic intent. We found statistically significant differences in therapeutic language use between stem cell (n = 72, median statement frequency 3.5, IQR 1–7) and drug trial (n = 72 median statement frequency 1, IQR 0–3.5) records; Mann–Whitney U = 1808.5, p = .001. A correspondence plot, accounting for 65% of data variability, suggests correspondences among patterns of therapeutic language, regional location, and type of sponsorship between the two record types. Individual-, institute-, and government-sponsored stem-cell trials showed a tendency toward high frequency use of therapeutic statements. This study, the first to explore the potential for therapeutic miscommunication in electronic registries, suggests the need for greater scrutiny of language used in registered trials. Recommendations are offered to improve the integrity of records submitted to ClinicalTrials.gov.

Direct-to-Consumer Advertising in Black and White: Racial Differences in Placement Patterns of Print Advertisements for Health Products and Messages

If direct-to-consumer advertising (DTCA) increases consumer participation in healthcare, then it may provide a useful strategy for addressing health disparities, in part, where patient-level barriers have contributed to such disparities. However, this presumes equitable access to DTCA. Using mixed methods, we explored advertisement patterns in matched African American and general audience magazines across a range of genres and ad types. Results suggest no significant differences in ad frequencies by race. However other meaningful categorical and qualitative differences were found, suggesting that advertisers may fall short in maximizing DTCA as an adjunctive strategy for empowering populations at risk for health disparities.

Having a Say: Agency and End-of-Life Decision-making in The Chaneysville Incident

I wanted to push the door open and just go in, but you do not do that to a man, not even to save his life. And so I waited, and waited, and raised my hand to knock again. Then I heard the sound coming from behind the weather ravished door: a long racking cough. I shoved the door open and stepped inside. “Jack?” I said, as the door swung to behind me. He coughed again. His breath came in harsh asthmatic whistles, mucus shifting in his chest. Pneumonia. But I didn’t mind; at least he was breathing. I moved towards where he lay and looked down, although I knew I could not see him [in the dark]. I could smell him, though. He stank of urine and feces and unhealthy perspiration. “Jack,” I said, stupidly, “you all right?” He chuckled, the same deep, throaty chuckle he had always had, and my heart lifted. But then the chuckle ended in a cough, not a rumbling cough, but a high, deep, tight one. I shuddered at the sound of it, for I knewwhat it was like to lie in a bed feeling the vise closing down on your chest, knew hewould be feeling no relief... “It doesme good to see you,” I said. I reached out through the darkness, but I stopped myself before I touched him; he would not want that, not now, when it would feel like the touch of a nurse. He would rather die than have that. [...] “We’re gonna have to do somethin’ about that cough,” I told him. “More whisky,” he croaked. “You need a doctor,” I said. [...]“Like hell I do. Last time I went to a doctor, I went over to see Old Doc Martinson, an’ that old quack thumped me an’ poundedmean stuck his finger upma butt an’ then chargedme a dollar... and that was the last time I ever had no truck with doctors. ... [...] “You need a hospital. That cough sounds like your guts are comin’ out.” “... [Y]ouwantme to go over there an’ trust thempeople? Like hell I will. I ain’t sayin’ they’d kill me, now, but they sure as hell would let me die. Wouldn’t be the first time it happened, neither. Lord knows your mama, she’s anxious to think well a white folks, but even she’ll tell you ‘bout what happened to one a them big-time colored Methodist bishops, took sick an’ they put him in a white folks’ hospital an’ before they could turn around, them white folks had just like forgot to give himwhat hewas supposed to be getting’ an he up and died.” [...] We had dreamed away the day, he in delirium, I in reverie. From time to time he wakened to cough, from time to time I stirred to put more wood on the fire... I drifted, recalling another time when I had sipped whisky and listened to a fire’s keening. My eleventh birthday. A night in summer, the air warm enough but tinged with the chill that always haunts themountains... We had been camped in the lee of a giant boulder ... Old Jack sat close to the flames, sipping a toddy from a tin cup. I sat beside him, sipping from a tin cup of my own. Old Jack, as usual, was talking, but softly; he was telling a tale. I could not really hear him; I had had 3 or 4 toddies by that time, and all I could really do was sit and hold the warm cup clutched against my belly, watching the flames dance against the backdrop of the night. His words came to me only in bits and snatches, but I had not needed to hear more; I knew the tale. He had told me the story twenty times by then, but he had only needed to tell me once, for at that first telling he had said that it was a tale that [my father] Moses Washington had liked to tell over and over again. And so I could sit by the campfire, hearing the words with only half of my mind, filling in the details on my own, telling myself the story of a dozen slaves who had come north on the Underground Railroad, fleeing whatever horrors were behind them, and who had got lost just north of the Mason-Dixon Line, somewhere in the lower reaches of the County, and who, when they could no longer elude the men who trailed them with dogs and horses and ropes and chains, had begged to be killed rather than be taken back to bondage.” This was the first telling in the novel of the legendary incident in Chaneysville, Pennsylvania for which the novel is titled. The story is told a second time by the narrator, John, after he reconstructs bits and pieces of history and comes to a new understanding of the tale of the twelve runaways facing their final stand in Chaneysville: that in the end, realizing that they were about to be caught and returned to slavery, Published online May 7, 2010 JGIM

New York Super-AIDS Case: Physician as Public Health Officer

Public health officials have a responsibility to alert the public to prospective dangers without unduly restricting individual freedom or adding to the stigmatization of certain illnesses. Virtual Mentor is a monthly bioethics journal published by the American Medical Association.