"Wrongful Birth" Claims and the Paradox of Parenting a Child with a Disability.

"Wrongful birth" is a controversial medical malpractice claim raised by the mother of a child born with a disability against a medical professional whose failure to provide adequate prenatal information denied her the chance to abort. Plaintiff-mothers are required to testify that, but for the defendant's negligence, they would have terminated their pregnancy. Accordingly, alongside pro-life activists, disability rights advocates have opposed "wrongful birth" claims for stigmatizing and discriminating against people with disabilities by framing their very existence as a harm. Despite plaintiff-mothers' need for caretaking resources, scholars have recommended solutions ranging from the wholesale elimination of the wrongful birth claim to the curtailment of damages. To the extent scholars and the media have acknowledged mothers in the wrongful birth discourse at all, often it has been to blame and shame them for allegedly rejecting their children. They have paid little attention to the ways wrongful birth jurisprudence forces mothers to disavow their children in court, and thereby to forfeit the "good mother" ideal, in exchange for the possibility of securing necessary resources for their children. Commentators who question plaintiff-mothers' maternal devotion exacerbate the psychological toll the law already imposes. This Article shifts the blame from mothers to the legal system. While wrongful birth proceedings portray mothers' feelings about their children as categorically negative, real life accounts and social science findings reveal the true paradoxical experiences of all mothers, including plaintiff-mothers raising children with disabilities. To acknowledge this complex reality and mitigate the emotional strain of bringing a wrongful birth claim, this Article proposes several legal reforms: (1) broadening the analysis of emotional distress to reflect and legitimize mothers' paradoxical feelings about their children; (2) reframing the harm to mothers as loss of reproductive choice rather than as the birth of a flawed child and, accordingly, expanding available economic damages to include plaintiff-mothers' unexpected childcare responsibilities; and (3) educating plaintiffs' attorneys to empathize with the emotional aspects of mothers' litigation experiences and to counsel mothers accordingly. Today's approach to "wrongful birth" claims, which both stigmatizes disability and strains caretakers, demands urgent reform.

Use of information resources by patients with cancer and their companions.

BACKGROUND: Use of the Internet is common among patients with cancer and their companions. However, little is known about patterns of use of print or telephone-based resources amidst growing Internet utilization, nor is it known whether different types of information are sought from electronic compared with print media. It is not clear as to whether patients and their companions differ in their patterns of content seeking. METHODS: A survey was developed to evaluate the use of electronic and nonelectronic informational resources by patients and their companions. During a 10-week period, this questionnaire was administered to 443 outpatients and 124 paired companions attending an urban academic cancer center. RESULTS: In this cohort, 64% of patients and 76% of companions were computer owners, with home Internet access indicated by 58% and 68%, respectively. Use of the Internet to obtain cancer-related information was reported by 44% of patients and 60% of companions. Print resources were used by 79% of patients and 83% of companions, with telephone resources used by 22% and 23%, respectively. The majority of Internet users also read print content (85%), whereas one-half of print users did not access data electronically (52%). Topic areas sought via print and the Internet were similar, with the exception of nutrition-related information, which was more commonly sought in print texts. There was a high rate of concordance between patient and companion use of both electronic and nonelectronic resources. CONCLUSIONS: Despite recent publicity and scrutiny focusing on the quality of Internet health care content, print products remain the most common source of information sought by patients with cancer. Future investigation should focus on the quality of print products used by patients.

Perspectives on the value of American Society of Clinical Oncology clinical guidelines as reported by oncologists and health maintenance organizations.

PURPOSE: Although the American Society of Clinical Onoclogy's (ASCO) Health Services Research (HSR) committee activities have primarily focused on clinical guideline development, little is known about the value placed on these guidelines by the desired end users. ASCO members and Health Maintenance Organizations (HMOs) were surveyed on the value and implementation of ASCO guidelines. In this article, we summarize our findings. METHODS: ASCO members (n = 1500) were queried about whether they had read ASCO's first four clinical guidelines and technology assessment; whether they agreed with the recommendations; whether they used guidelines in clinical practice; and how guidelines had affected reimbursement. HMOs (n = 131) were queried on how they identify, implement, and value the first four ASCO clinical guidelines. RESULTS: The membership survey indicated that ASCO guidelines were read more often by physicians in private healthcare settings compared with physicians in academic practices (P <.02). Disagreement rates were low for all guidelines (range, 1% to 7%). One quarter of respondents reported that the guidelines were difficult to find and difficult to apply to the practice setting, and approximately one tenth of respondents indicated that the guidelines were difficult to evaluate, interpret, or read. The HMO survey indicated that one third of HMOs reported use of ASCO guidelines, with higher rates of usage by larger HMOs and by those with higher National Committee on Quality Assurance (NCQA) ratings. Respondent HMOs valued guidelines for various purposes and used multiple methods of guideline identification and implementation. CONCLUSION: ASCO guidelines are generally highly supported by physicians and HMOs. Additional studies are needed to identify implementation barriers and to see whether guidelines have resulted in improvements in healthcare.

Survival of blacks and whites after a cancer diagnosis.

CONTEXT: In recent years a theory that cancer biology is different in blacks and whites has gained prominence in reaction to epidemiologic observations that blacks have poorer survival than whites, even when diagnosed with cancer of similar severity. Yet, few studies have evaluated whether lower-quality treatment and shorter overall life expectancy due to a greater burden of other illnesses may explain the survival discrepancy. OBJECTIVE: To estimate the magnitude of overall and cancer-specific survival differences between blacks and whites who receive comparable treatment for similar-stage cancer. DATA SOURCES: We searched MEDLINE for English-language articles published from 1966 to January 2002 that reported on overall survival for black and white patients treated similarly for cancer. STUDY SELECTION: The abstracts or titles for 891 citations were independently examined by 2 authors. The full text was retrieved if the abstract mentioned both black and white patients, made some comment regarding either similarity of treatment received or presented an analysis based on the treatment received, and commented on survival. Studies were included if they included data for at least 10 black and 10 white patients; specified the cohort ascertainment method and what measures were undertaken to minimize loss to follow-up; summarized survival of both blacks and whites using actuarial measures; presented outcomes within stage, adjusted for stage, or based on cohorts with balanced stage distributions; and specified that blacks and whites in the study received similar treatment. We identified 89 unique cohorts in 54 articles that met our inclusion criteria. DATA EXTRACTION: Overall survival rates and hazard ratios (HRs) for death for blacks relative to whites were calculated. These were subsequently adjusted for rates of death due to causes other than the cancer under study to determine cancer-specific survival and cancer-specific HRs. DATA SYNTHESIS: Results represent 189 877 white and 32 004 black patients with 14 different cancers. Compared with whites, blacks had an overall excess risk of death (HR, 1.16; 95% confidence interval [CI], 1.12-1.20). After correction for deaths due to other causes, the cancer-specific HR was 1.07 (95% CI, 1.02-1.13). Of the 14 cancers, blacks were at a significantly higher risk of cancer-specific death only for cancer of the breast, uterus, or bladder. CONCLUSIONS: Only modest cancer-specific survival differences are evident for blacks and whites treated comparably for similar-stage cancer. Therefore, differences in cancer biology between racial groups are unlikely to be responsible for a substantial portion of the survival discrepancy. Differences in treatment, stage at presentation, and mortality from other diseases should represent the primary targets of research and interventions designed to reduce disparities in cancer outcomes.