Speaking for Our Father.

A living will is a document in which an individual can communicate his or her health care choices to loved ones in the event that he or she is unable to do so directly. Many surrogate decision-makers use living wills as guides; however, the existence of such documents does not entirely relieve them of their burden. Surrogate decision-makers often need to consider the impact of the personal and family burdens entailed by their decisions, and the stress accompanying these burdens regularly creates high levels of anxiety and depression. This stress can be exacerbated when two surrogate decision-makers are at loggerheads as to the best way forward. This case study illustrates the effects of stress accompanying disagreement among surrogate decision-makers-here, the patient's adult sons-and demonstrates that a process of listening can help the bioethicist identify the values that are important to the patient and, consequently, to the surrogate as well, and use these values to help address the issue.

How acceptable is paternalism? A survey-based study of clinician and nonclinician opinions on paternalistic decision making.

We conducted an empirical study to explore clinician and lay opinions on the acceptability of physician paternalism. Respondents read a vignette describing a patient with brain hemorrhage facing urgent surgery that would be lifesaving but would result in long-term severe disability. Cases were randomized to show either low or high surrogate distress and certain or uncertain prognosis, with respondents rating the acceptability of not offering brain surgery. Clinicians (N = 169) were more likely than nonclinicians (N = 649) to find the doctor withholding surgery acceptable (30.2% vs. 11.4%, p ≤ 0.001). Among clinicians, the doctor withholding surgery was more acceptable when prognosis was certain to be poor (odds ratio [OR] 2.04, 95% confidence interval [CI] 1.04, 4.01). There was no effect of surrogate distress on clinician ratings. Responses among lay public were more variable. Given the differences in attitudes across clinicians and lay public, there is an ongoing need to engage stakeholders in the process of end-of-life decision making.

Ethics in the Setting of Burned Patients.

This article considers multiple ethical principles in the context of patients with burns. It explores the application of these principles to burn care and the impact on medical decision making, through several clinical vignettes.

[Patients' declared intentions and emergency medicine]. / Patientenwille und Akutmedizin.

Patients with complex medical problems and acute life-threatening diseases deserve a physician with the capability of rapid decision making. Despite an emergency scenario with several unknown or uncertain variables an individual therapeutic plan needs to be defined for each patient. In order to achieve this goal the physician must define medical indications for each form of treatment. Secondly, the patients declared intentions must be respected concerning the previously defined medical indications; however, very often the patients' will is not known. It is very difficult to define an individual treatment plan especially if the patient is not able to adequately communicate. In these situations a custodian is helpful to find out the patients declared intentions towards the current medical situation. If there is no advance directive, family members often have to act as surrogates to find out what therapy goal is best for the individual patient. The patients' autonomy is a very highly respected ethical priority even when the ability for the otherwise usual practice of shared decision-making between physician and patient is compromised. Therefore, in order to do justice to this demanding situation it is necessary to deal with the characteristics of the physician-patient-relatives relationship in emergency medicine.

Ethical Issues in Surgical Critical Care: The Complexity of Interpersonal Relationships in the Surgical Intensive Care Unit.

A major challenge in the era of shared medical decision making is the navigation of complex relationships between the physicians, patients, and surrogates who guide treatment plans for critically ill patients. This review of ethical issues in adult surgical critical care explores factors influencing interactions among the characters most prominently involved in health care decisions in the surgical intensive care unit: the patient, the surrogate, the surgeon, and the intensivist. Ethical tensions in the surgeon-patient relationship in the elective setting may arise from the preoperative surgical covenant and the development of surgical complications. Unlike that of the surgeon, the intensivist's relationship with the individual patient must be balanced with the need to serve other acutely ill patients. Due to their unique perspectives, surgeons and intensivists may disagree about decisions to pursue life-sustaining therapies for critically ill postoperative patients. Finally, although surrogates are asked to make decisions for patients on the basis of the substituted judgment or best interest standards, these models may underestimate the nuances of postoperative surrogate decision making. Strategies to minimize conflicts regarding treatment decisions are centered on early, honest, and consistent communication between all parties.

A single consent for serial anesthetics in burn surgery.

Obtaining anesthesia informed consent for a series of repetitive debridements in burn-injured patients requires a significant time investment for anesthesiologists and patient families. A single consent form was introduced that covered multiple related anesthetics in burn patients. The number of consents per patient before and after implementation was analyzed using Welch ANOVA; Tukey-Kramer post hoc test, with 99% confidence intervals for mean differences was used to examine pairwise comparisons. The mean number of consents per patient was 4.5 ± 2.8 and 1.6 ± 0.51 (P < 0.001) before (2010) and after implementation (2013), respectively. The Multiple Related Anesthetics Consent Form in this population resulted in less time spent by anesthesia providers in obtaining consent for patients undergoing multiple related procedures while providing patient- and family-centric care.

Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria.

BACKGROUND: Studies on informed consent to medical research conducted in low or middle-income settings have increased, including empirical investigations of consent to genetic research. We investigated voluntary participation and comprehension of informed consent among women involved in a genetic epidemiological study on breast cancer in an urban setting of Nigeria comparing women in the case and control groups. METHODS: Surveys were administered in face-to-face interviews with 215 participants following their enrollment in the genetic study (106 patients, 109 controls). Audio-taped in-depth interviews were conducted with a sub-sample of 17 (8%) women who completed the survey. RESULTS: The majority of all participants reported being told that participation in the genetic study was voluntary (97%), that they did not feel pressured to participate in the study (99%), and that they could withdraw from the study (81%). The majority of the breast cancer patients (83%) compared to 58% of women in the control group reported that the study purpose was to learn about the genetic inheritance of breast cancer (OR 3.44; 95% CI =1.66, 7.14, p value = 0.001). Most participants reported being told about study procedures (95%) and study benefits (98%). Sixty-eight percent of the patients, compared to 47% of the control group reported being told about study risks (p-value <0.001). Of the 165 married women, 19% reported asking permission from their husbands to enroll in the breast cancer study; no one sought permission from local elders. In-depth interviews highlight the use of persuasion and negotiation between a wife and her husband regarding study participation. CONCLUSIONS: The global expansion of genetic and genomic research highlights our need to understand informed consent practices for studies in ethnically diverse cultural environments such as Africa. Quantitative and qualitative empirical investigations of the informed consent process for genetic and genomic research will further our knowledge of complex issues associated with communication of information, comprehension, decisional authority and voluntary participation. In the future, the development and testing of innovative strategies to promote voluntary participation and comprehension of the goals of genomic research will contribute to our understanding of strategies that enhance the consent process.

The standard of care and conflicts at the end of life in critical care: lessons from medical-legal crossroads and the role of a quasi-judicial tribunal in decision-making.

PURPOSE: The goals of this qualitative study were to review the last 7 years of end of life legal decisions within the critical care field to explore how medical benefit is defined and by whom and the role of the standard of care (SoC) in conflict resolution. METHODS: A public online, non-profit database of the Federation of Law Societies of Canada was searched for relevant Consent and Capacity Board decisions from 2003 to 2012. In total, 1486 cases were collected, and purposive sampling identified a total of 29 decisions regarding use of life-sustaining treatments at end of life. Using modified grounded theory, decisions were read and analyzed from a central SoC concept to understand definitions of benefit, rationales for case adjudication, and repercussions of legal recourse in conflict resolution. RESULTS: Medical benefit was clearly defined, and its role in determining SoC, transparent. Perceptions of variability in SoC were enhanced by physicians in intractable conflicts seeking legal validation by framing SoC issues as "best interest" determinations. The results reveal some key problems in recourse to the Consent and Capacity Board for clinicians, patients and substitute decision makers in such conflict situations. CONCLUSIONS: This study can help improve decision-making by debunking myth of variability in determinations of medical benefit and the standards of care at end of life and reveal the pitfalls of legal recourse in resolving intractable conflicts.

Operating one-handed: emergency treatment of Jehovah's Witnesses.

An elderly woman was brought to the emergency room (ER) hypotensive in a confused mental state from what turned out at exploration to be a ruptured splenic artery aneurysm. You are in the operating room, and the anesthesiologist has just hung the first unit of blood but has not started infusion when the ER calls. The patient and her husband were visiting their children and live in another state. Her husband, an elder in a Jehovah's Witness congregation, arrived and is adamant that she have no transfusions. Her blood pressure is dangerously low. It is being maintained by a high-dose Levophed (leave-um dead) drip and continues to slip. You have avoided operating on Jehovah's Witness patients because of the added unnecessary risk they pose. Your assistant is of like mind. What is the best ethical course at this time?

Best interests at end of life: an updated review of decisions made by the Consent and Capacity Board of Ontario.

PURPOSE: To increase our understanding of the notion of "best interests" in end of life disagreements through an updated review of decisions made by the Consent and Capacity Board of Ontario. There was a significant increase (235%) in decisions from this tribunal between 2009 and 2011. "Best interests" test is used when no prior expressed wishes are known to the surrogate decision-makers. METHODS: Purposively sampled written decisions of the Consent and Capacity Board of Ontario between 2003 and 2011 that focused on the "best interests" of patients at the end of life. Interpretive content analysis was performed independently by 3 reviewers, and themes were identified by consensus. RESULTS: We found substitute decision makers (SDMs) rely on an appeal to their own values or religion in their interpretation of best interests; physicians rely on clinical conditions; board emphasizes alignment with Health Care Consent Act. In the more recent cases, we found that SDMs report that patients value suffering; that SDMs have unrealistic hope for recovery and can communicate and get direction from the incapable patient; that SDMs need education on their role and responsibility as SDM; and that SDMs need time to provide consent, and that most proposed treatment plans that were sources of conflict included "palliative care." INTERPRETATION: Several lessons are drawn for the benefit of health care teams engaged in disagreements at end of life with SDMs over the best interests of patients.

Surrogates and extra-familial interests.

A case is presented in which the therapeutic interests of the patient conflict with the safety of a community, and in which the surrogate decision maker has very limited knowledge of or concern for the patient's preferences. The substituted judgment and best interest (or rational patient) standards for surrogate decision making are problematic in this case. It is argued that the interests of even those outside the family ought to be taken seriously when making decisions about such cases, and it is proposed that clinical ethics committees could play a new role here. This case also illustrates the difficulties of making decisions regarding the treatment of a very unlikable patient.

Familiar interests and strange analogies: Baergen and Woodhouse on extra-familial interests.

The article by Professor Baergen and Dr. Woodhouse makes a succinct and serious contribution to progress in bioethical understanding of deciding for others. They begin with what is by now a familiar claim: family proxy decision makers may sometimes make decisions on behalf of incapacitated relatives that depart from what might be optimal from the patient's point of view, since the well-being of family members, or of the family as such, may be substantially affected by the direction of a patient's care.They then develop this idea, noting that others apart from family members can also be substantially affected by a patient's treatment, and arguing that the interests of strangers ought also to sometimes have a role in determining the aims and means of a patient's treatment. Baergen and Woodhouse also devote attention to how extra-familial interests might be implemented in medical decision making. While I unearth a troubling consequence of the effort to realize their theoretical conclusion practically, my chief task is to point to some disanalogies between families and strangers, and consider the extent to which they call into question the relevance of the interests of strangers to the treatment of patients.

The importance of patient-provider communication in end-of-life care.

Successful formulation and implementation of end-of-life care requires ongoing communication with the patient. When patients, for reasons of general medical or psychiatric illness, fail to verbally communicate, providers must be receptive to messages conveyed through alternate avenues of communication. We present the narrative of a man with schizophrenia who wished to forgo hemodialysis as a study in the ethical importance of attention to nonverbal communication. A multilayered understanding of the patient, as may be provided by both behavioral and motivational models, can inform the provider's ability to receive, process, and represent communicated content to the patient or his or her surrogate decision-maker.