Understanding respect: learning from patients.

BACKGROUND: The importance of respecting patients and participants in clinical research is widely recognised. However, what it means to respect persons beyond recognising them as autonomous is unclear, and little is known about what patients find to be respectful. OBJECTIVE: To understand patients' conceptions of respect and what it means to be respected by medical providers. DESIGN: Qualitative study from an academic cardiology clinic, using semistructured interviews with 18 survivors of sudden cardiac death. RESULTS: Patients believed that respecting persons incorporates the following major elements: empathy, care, autonomy, provision of information, recognition of individuality, dignity and attention to needs. CONCLUSIONS: Making patients feel respected, or valued as a person, is a multi-faceted task that involves more than recognising autonomy. While patients' views of respect do not determine what respect means, these patients expressed important intuitions that may be of substantial conceptual relevance.

The consent process for cadaveric organ procurement: how does it work? How can it be improved?

CONTEXT: Understanding the consent process that organ procurement organizations (OPOs) use is crucial to improving the process and thereby reducing the number of individuals who die each year for want of an organ transplant. However, no data exist on OPOs' current consent practices. OBJECTIVE: To assess whose wishes OPOs follow when procuring solid organs from deceased individuals and whether advance directives and computerized registries might improve the consent process for solid organ procurement. DESIGN, SETTING, AND PARTICIPANTS: Telephone survey conducted from June to August 1999 of all 61 active OPOs. MAIN OUTCOME MEASURES: Responses to the 49-question survey addressing consent practices in specific scenarios of deceased and next of kin wishes. RESULTS: Widespread divergence exists in OPOs' consent practices for cadaveric solid organ procurement. Regarding overall consent practices, 19 (31%) OPOs reported that they follow the deceased's wishes, 19 (31%) follow the next of kin's wishes, 13 (21%) procure organs if neither party objects, 8 (13%) procure organs if either party consents or neither objects, and 2 (3%) do not follow any of these 4 overall practices. These differences appear to be traceable to implicit ethical disagreements about whose wishes should be followed. A total of 29 (48%) OPOs reported having an official policy to address whether they follow the family's or deceased's wishes. Regarding factors that influence OPOs' choice of consent practice, 29 (48%) respondents ranked impact on the deceased's family as the most important factor, 13 (21%) ranked state law as most important, and 7 (11%) ranked the priority of the deceased's wishes as most important. Durable power of attorney appeared to have substantial weight in OPOs' decisions; for example, in the scenario in which the deceased supported organ donation and the next of kin opposed it, 34 (56%) OPOs reported they were likely to procure organs based on the consent of the holder of the deceased's durable power of attorney, whereas only 7 (11%) reported they were likely to procure organs based on a document of gift (a living will, donor card, or driver's license). CONCLUSIONS: Expanding the legal scope of living wills to cover individuals' organ donation preferences would likely have little impact on procurement rates. In contrast, expanding the legal scope of durable powers of attorney for health care may have a significant impact. A national discussion should take place addressing the underlying ethical issues that appear to account for much of the divergence among OPOs' consent practices for cadaveric solid organ procurement.