Homing in on the Social: System-Level Influences on Overly Aggressive Treatments at the End of Life.

CONTEXT: The American Medical System is programmed to a default setting of aggressive care for the terminally ill. Institutional norms of decision making have been shown to promote high-intensity care, regardless of consistency with patient preferences. There are myriad factors at a system, clinician, surrogate, and patient level that drive the culture of overly aggressive treatments in American hospitals. OBJECTIVE: The objective of this study was to understand physician perspective of the ways systems-level factors influence patient, physician, and surrogate perceptions and consequent behavior. METHODS: Semi-structured in-depth qualitative interviews with 42 internal medicine physicians across three American academic medical centers were conducted. This qualitative study was exploratory in nature, intended to enhance conceptual understanding of underlying phenomena that drive physician attitudes and behavior. RESULTS: The interviews revealed many factors that contributed to overly aggressive treatments at the end of life. Systemic factors, which describe underlying cultures (including institutional, professional, or community-based cultures), typical practices of care, or systemic defaults that drive patterns of care, manifested its influence both directly and through its impact on patient, surrogate, and physician behaviors and attitudes. CONCLUSION: Institutional cultures, social norms, and systemic defaults influence both normative beliefs regarding standards of care and treatments plans that may not benefit seriously ill patients.

Moral Distress Amongst American Physician Trainees Regarding Futile Treatments at the End of Life: A Qualitative Study.

BACKGROUND: Ethical challenges are common in end of life care; the uncertainty of prognosis and the ethically permissible boundaries of treatment create confusion and conflict about the balance between benefits and burdens experienced by patients. OBJECTIVE: We asked physician trainees in internal medicine how they reacted and responded to ethical challenges arising in the context of perceived futile treatments at the end of life and how these challenges contribute to moral distress. DESIGN: Semi-structured in-depth qualitative interviews. PARTICIPANTS: Twenty-two internal medicine residents and fellows across three American academic medical centers. APPROACH: This study uses systematic qualitative methods of data gathering, analysis and interpretation. KEY RESULTS: Physician trainees experienced significant moral distress when they felt obligated to provide treatments at or near the end of life that they believed to be futile. Some trainees developed detached and dehumanizing attitudes towards patients as a coping mechanism, which may contribute to a loss of empathy. Successful coping strategies included formal and informal conversations with colleagues and superiors about the emotional and ethical challenges of providing care at the end of life. CONCLUSIONS: Moral distress amongst physician trainees may occur when they feel obligated to provide treatments at the end of life that they believe to be futile or harmful.

Influence of institutional culture and policies on do-not-resuscitate decision making at the end of life.

IMPORTANCE: Controversy exists regarding whether the decision to pursue a do-not-resuscitate (DNR) order should be grounded in an ethic of patient autonomy or in the obligation to act in the patient's best interest (beneficence). OBJECTIVE: To explore how physicians' approaches to DNR decision making at the end of life are shaped by institutional cultures and policies surrounding patient autonomy. DESIGN, SETTING, AND PARTICIPANTS: We performed semistructured in-depth qualitative interviews of 58 internal medicine physicians from 4 academic medical centers (3 in the United States and 1 in the United Kingdom) by years of experience and medical subspecialty from March 7, 2013, through January 8, 2014. Hospitals were selected based on expected differences in hospital culture and variations in hospital policies regarding prioritization of autonomy vs best interest. MAIN OUTCOMES AND MEASURES: This study identified the key influences of institutional culture and policies on physicians' attitudes toward patient autonomy in DNR decision making at the end of life. RESULTS: A hospital's prioritization of autonomy vs best interest as reflected in institutional culture and policy appeared to influence the way that physician trainees conceptualized patient autonomy. This finding may have influenced the degree of choice and recommendations physician trainees were willing to offer regarding DNR decision making. Trainees at hospitals where policies and culture prioritized autonomy-focused approaches appeared to have an unreflective deference to autonomy and felt compelled to offer the choice of resuscitation neutrally in all situations regardless of whether they believed resuscitation to be clinically appropriate. In contrast, trainees at hospitals where policies and culture prioritized best-interest-focused approaches appeared to be more comfortable recommending against resuscitation in situations where survival was unlikely. Experienced physicians at all sites similarly did not exclusively allow their actions to be defined by policies and institutional culture and were willing to make recommendations against resuscitation if they believed it would be futile. CONCLUSIONS AND RELEVANCE: Institutional cultures and policies might influence how physician trainees develop their professional attitudes toward autonomy and their willingness to make recommendations regarding the decision to implement a DNR order. A singular focus on autonomy might inadvertently undermine patient care by depriving patients and surrogates of the professional guidance needed to make critical end of life decisions.

A long shadow: Nazi doctors, moral vulnerability and contemporary medical culture.

More than 7% of all German physicians became members of the Nazi SS during World War II, compared with less than 1% of the general population. In so doing, these doctors willingly participated in genocide, something that should have been antithetical to the values of their chosen profession. The participation of physicians in torture and murder both before and after World War II is a disturbing legacy seldom discussed in medical school, and underrecognised in contemporary medicine. Is there something inherent in being a physician that promotes a transition from healer to murderer? With this historical background in mind, the author, a medical student, defines and reflects upon moral vulnerabilities still endemic to contemporary medical culture.

Impact of gene patents and licensing practices on access to genetic testing and carrier screening for Tay-Sachs and Canavan disease.

Genetic testing for Tay-Sachs and Canavan disease is particularly important for Ashkenazi Jews, because both conditions are more frequent in that population. This comparative case study was possible because of different patenting and licensing practices. The role of DNA testing differs between Tay-Sachs and Canavan diseases. The first-line screening test for Tay-Sachs remains an enzyme activity test rather than genotyping. Genotyping is used for preimplantation diagnosis and confirmatory testing. In contrast, DNA-based testing is the basis for Canavan screening and diagnosis. The HEXA gene for Tay-Sachs was cloned at the National Institutes of Health, and the gene was patented but has not been licensed. The ASPA gene for Canavan disease was cloned and patented by Miami Children's Hospital. Miami Children's Hospital did not inform family members and patient groups that had contributed to the gene discovery that it was applying for a patent, and pursued restrictive licensing practices when a patent issued in 1997. This led to intense controversy, litigation, and a sealed, nonpublic 2003 settlement that apparently allowed for nonexclusive licensing. A survey of laboratories revealed a possible price premium for ASPA testing, with per-unit costs higher than for other genetic tests in the Secretary's Advisory Committee on Genetics, Health, and Society case studies. The main conclusion from comparing genetic testing for Tay-Sachs and Canavan diseases, however, is that patenting and licensing conducted without communication with patients and advocates cause mistrust and can lead to controversy and litigation, a negative model to contrast with the positive model of patenting and licensing for genetic testing of cystic fibrosis.

Columbia University's Axel patents: technology transfer and implications for the Bayh-Dole Act.

CONTEXT: The Bayh-Dole Act of 1980, which gave federal grantees and contractors the right to patent and license inventions stemming from federally funded research, was intended to encourage commercial dissemination of research that would otherwise languish for want of a patent incentive. The case of Columbia University's Axel patents, which claimed a scientific method to introduce foreign proteins into nucleated cells, illustrates a secondary outcome of the Bayh-Dole Act: the incentive for federal grantees and contractors to pursue royalty revenues from patented research, even for inventions for which commercial use did not require patents. METHODS: This article describes oral interviews with two of the three inventors and a former high-ranking administrator at Columbia; correspondence with several faculty members at Columbia to obtain key royalty figures and information about Columbia's licensing strategy; patent searches; examinations of legal records of court proceedings; and analysis of citation trends for the seminal papers disclosing the invention of cotransformation. FINDINGS: Columbia University and the inventors profited handsomely from the Axel patents, earning $790 million in revenues through licensing arrangements that tapped profits from end products made by biotechnology and pharmaceutical companies. Columbia's aggressive effort to extend the patent duration also led to considerable legal expenditures and fierce controversy. In particular, obtaining and enforcing a 2002 patent proved costly, politically difficult, and financially fruitless and attracted intense criticism for behavior unbecoming a nonprofit academic institution. CONCLUSIONS: This case study raises several important questions about the logic and future revisions of the Bayh-Dole Act: Are revenue generation and financial rewards for inventing valuable technologies legitimate goals for this act? If so, does the federal government need credible mechanisms for oversight of, or checks and balances on, the rights conferred?