Five Things Clinicians Should Know When Caring for Unrepresented Patients.

Increasingly, clinicians confront patients who are incapacitated and have no available surrogate. Such unrepresented patients cannot consent to proposed health care, and nobody else is available who is authorized to consent on their behalf. Despite the challenge of decision making for unrepresented patients, few laws or professional organization policy statements offer a solution. This article helps fill this void by describing the top 5 things clinicians should know when they are caring for unrepresented patients: (1) realize that these patients are highly vulnerable; (2) confirm that the patient is incapacitated; (3) confirm that the patient is unrepresented; (4) appreciate variability among state law decision-making processes for unrepresented patients; (5) use guardianship only as a last resort.

Who Makes Decisions for Incapacitated Patients Who Have No Surrogate or Advance Directive?

Unrepresented patients are those who have no surrogate or advance directive to guide medical decision making for them when they become incapacitated. While there is no perfect solution to the problem of making medical decisions for such vulnerable patients, 3 different approaches are noted in the literature: a physician approach, an ethics committee approach, and a guardianship approach. Recent policies and laws have required an approach that is "tiered" with respect to both who is involved and the gravity of the medical treatment questions at issue. In a general sense, some variant of a tiered approach is likely the best possible solution for jurisdictions and health institutions-both those already with and those without a tiered approach-to the challenging puzzle of treating unrepresented patients.

Consent by Proxy for Nonurgent Pediatric Care.

Minor-aged patients are often brought to the pediatrician for nonurgent acute medical care, physical examinations, or health supervision visits by someone other than their legally authorized representative, which, in most situations, is a parent. These surrogates or proxies can be members of the child's extended family, such as a grandparent, adult sibling, or aunt/uncle; a noncustodial parent or stepparent in cases of divorce and remarriage; an adult who lives in the home but is not biologically or legally related to the child; or even a child care provider (eg, au pair, nanny, private-duty nurse/nurse's aide, group home supervisor). This report identifies common situations in which pediatricians may encounter "consent by proxy" for nonurgent medical care for minors, including physical examinations, and explains the potential for liability exposure associated with these circumstances. The report suggests practical steps that balance the need to minimize the physician's liability exposure with the patient's access to health care. Key issues to be considered when creating or updating office policies for obtaining and documenting consent by proxy are offered.

[The Best Interest of the Child in Neonatology: Is It Best for the Child?]. / El Mejor Interés del Niño en Neonatología: ¿Es lo Mejor para el Niño?

Since its inceptions, the standard of best interest of the child was linked to decisions about suspend life-sustaining treatments in neonatal units and evaluation of treatments applied to children in terms of their quality of life. This origin has conditioned the interpretation of the standard from two extremes: a vitalistic one, and a non vitalistic interpretation that triumphed in Western bioethics and has led to the consecration of the standard of best interest of the child in the Convention on the Rights of the Child of United Nations. A detailed analysis reveals a simplistic, utilitarian and proportionalist standard, which change the basis of parenthood. We therefore believe that the standard of the best interest of the child is not the best for the child in neonatal intensive care units and especially not in the process of withhold or withdrawal life-sustaining treatments.

Deliberative democracy and cancer screening consent: a randomised control trial of the effect of a community jury on men's knowledge about and intentions to participate in PSA screening.

OBJECTIVE: Prostate-specific antigen (PSA) screening is controversial. A community jury allows presentation of complex information and may clarify how participants view screening after being well-informed. We examined whether participating in a community jury had an effect on men's knowledge about and their intention to participate in PSA screening. DESIGN: Random allocation to either a 2-day community jury or a control group, with preassessment, postassessment and 3-month follow-up assessment. SETTING: Participants from the Gold Coast (Australia) recruited via radio, newspaper and community meetings. PARTICIPANTS: Twenty-six men aged 50-70 years with no previous diagnosis of prostate cancer. INTERVENTION: The control group (n=14) received factsheets on PSA screening. Community jury participants (n=12) received the same factsheets and further information about screening for prostate cancer. In addition, three experts presented information on PSA screening: a neutral scientific advisor provided background information, one expert emphasised the potential benefits of screening and another expert emphasised the potential harms. Participants discussed information, asked questions to the experts and deliberated on personal and policy decisions. MAIN OUTCOME AND MEASURES: Our primary outcome was change in individual intention to have a PSA screening test. We also assessed knowledge about screening for prostate cancer. RESULTS: Analyses were conducted using intention-to-treat. Immediately after the jury, the community jury group had less intention-to-screen for prostate cancer than men in the control group (effect size=-0.6 SD, p=0.05). This was sustained at 3-month follow-up. Community jury men also correctly identified PSA test accuracy and considered themselves more informed (effect size=1.2 SD, p<0.001). CONCLUSIONS: Evidence-informed deliberation of the harms and benefits of PSA screening effects men's individual choice to be screened for prostate cancer. Community juries may be a valid method for eliciting target group input to policy decisions. TRIAL REGISTRATION NUMBER: Australian and New Zealand Clinical Trials Registry (ACTRN12612001079831).

Desperately seeking a surrogate - for a patient lacking decision-making capacity.

Our hospital's policy and procedures for "Patients Without Surrogates" provides for gradated safeguards for managing patients' treatment and care when they lack decision-making capacity, have no advance directives, and no surrogate decision makers are available. The safeguards increase as clinical decisions become more significant and have greater consequences for the patient. The policy also directs social workers to engage in "rigorous efforts" to search for surrogates who can potentially provide substituted judgments for such patients. We describe and illustrate the policy, procedures, and kinds of expected rigorous efforts through our narration of an actual but disguised case for which we provided clinical ethics guidance and social work expertise. Our experience with and reflection on this case resulted in four recommendations we make for health care facilities and organizations that aim to provide quality care for their own patients without surrogates.

Community consultation for prehospital research: experiences of study coordinators and principal investigators.

OBJECTIVE: To assess principal investigators' and study coordinators' views and experiences regarding community consultation in a multicenter trial of prehospital treatment for status epilepticus conducted under an exception from informed consent for research in emergency settings. METHODS: Principal investigators and study coordinators at all 17 hubs for the Rapid Anticonvulsant Medication Prior to Arrival Trial (RAMPART) were invited to complete a web-based survey regarding community consultation at their site for RAMPART. Major domains included 1) perceived goals of community consultation, 2) experiences with and views of community consultation methods used, 3) interactions with IRB regarding community consultation, and 4) general satisfaction and lessons learned. Descriptive statistics were tabulated for Likert scale data; relevant themes were reported for text-based data. RESULTS: Twenty-eight individuals (16 coordinators and 12 investigators) representing all 17 RAMPART hubs completed the survey. Respondents considered multiple community consultation goals to be important, with least support for the role of community consultation in altering study design. All sites used multiple methods (median = 5). The most widely used, and generally favored, method was attending previously scheduled meetings of existing groups. Respondents expressed frustration with low attendance and responsiveness at open public meetings. CONCLUSIONS: Coordinators and investigators in this trial viewed community consultation efforts as successful but reported real challenges generating public interest. Individuals with the condition under study were found to be more engaged and supportive of the trial. Respondents endorsed numerous potential goals of the community consultation process and often combined methods to achieve these goals.

Knowledge of state-level abortion laws and regulations among reproductive health care providers.

OBJECTIVE: To assess the accuracy of knowledge of state-level abortion laws and regulations among clinicians who provide reproductive health care. METHODS: Members of several reproductive health professional organizations completed a self-administered survey. Respondents were asked if laws and regulations were present in their state. Responses were graded according to the Guttmacher Institute's monthly publication State Policies in Brief: An Overview of Abortion Laws. RESULTS: Three hundred forty-one surveys were completed. Fifty-nine respondents met exclusion criteria and were excluded. Of the remaining 282, most (80.1%) were physicians, and over half (55.0%) reported currently providing abortion services. Most (86.5%) considered themselves to be informed about abortion laws and regulations in their state. Knowledge of laws and regulations involving spousal involvement, mandatory waiting periods, and availability of private insurance coverage was high (77.0%-86.2%). Receiving reminders of state abortion laws and regulations was associated with significantly more accurate knowledge of parental notification and spousal consent laws, mandatory waiting periods, and availability of Medicaid and private insurance coverage (all p < .05). Receiving reminders and being a provider of abortion services were independent predictors of better knowledge of state abortion laws and regulations among clinicians who provide reproductive health care. CONCLUSION: Clinicians who provide reproductive health care had highly accurate knowledge of some abortion laws and regulations, but less accurate knowledge of others. Reminders of laws and regulations may increase knowledge among clinicians. Given the importance of accurate information, evaluation of mechanisms to increase knowledge of abortion laws and regulations may be warranted.

Withdrawal of artificial nutrition and hydration for patients in a permanent vegetative state: changing tack.

In the United States, the decision of whether to withdraw or continue to provide artificial nutrition and hydration (ANH) for patients in a permanent vegetative state (PVS) is placed largely in the hands of surrogate decision-makers, such as spouses and immediate family members. This practice would seem to be consistent with a strong national emphasis on autonomy and patient-centered healthcare. When there is ambiguity as to the patient's advanced wishes, the presumption has been that decisions should weigh in favor of maintaining life, and therefore, that it is the withdrawal rather than the continuation of ANH that requires particular justification. I will argue that this default position should be reversed. Instead, I will argue that the burden of justification lies with those who would continue artificial nutrition and hydration (ANH), and in the absence of knowledge as to the patient's advanced wishes, it is better to discontinue ANH. In particular, I will argue that among patients in PVS, there is not a compelling interest in being kept alive; that in general, we commit a worse violation of autonomy by continuing ANH when the patient's wishes are unknown; and that more likely than not, the maintenance of ANH as a bridge to a theoretical future time of recovery goes against the best interests of the patient.

Effect of socioeconomic deprivation and the appointment of Welfare Attorneys.

Most patients in intensive care unit (ICU) lack decision-making ability. The Adults with Incapacity (Scotland) Act 2000 allows someone to appoint a Welfare Attorney (WA) to act on their behalf should they lose capacity. Scotland has areas of major socioeconomic deprivation associated with lower life-expectancy and with a lack of knowledge about and consequently difficulty accessing services. The effect of socioeconomic deprivation on WA registration was investigated. A complete list of registered WAs was categorized by deprivation. The Public Guardian, Scotland indicated whether patients admitted to ICU at Glasgow Royal (April 2006-May 2009) had a WA registered. All Scottish ICU admissions (2004-2008) were categorized by deprivation. Twelve of 1152 ICU patients at Glasgow Royal had a WA. Of 165,997 WAs registered, 5984 were in the most deprived and 27,970 in the most affluent areas. Overall, 3.9% of the Scottish population had a WA (1.4% in the most, 6.5% in the least deprived population decile). In conclusion, the uptake of WAs was low, especially in deprived areas. The reasons could include a lack of knowledge, not anticipating the need for a WA or not being confident in the process. Any educational package needs to target the most socioeconomically disadvantaged.

Key role of social work in effective communication and conflict resolution process: Medical Orders for Life-Sustaining Treatment (MOLST) Program in New York and shared medical decision making at the end of life.

In this article, the authors review the development of the Medical Orders for Life-Sustaining Treatment (MOLST) Program and recent landmark legislation in New York State in the context of advance care planning and shared medical decision making at the end of life. Social workers are central health care professionals in working with patients, families, practitioners, health care agents, and surrogates in the health systems and in the communication and conflict resolution process that is integral to health care decision making. The critical importance of ethics and end-of-life training and education for social workers is also addressed. Data from a pilot study evaluating interdisciplinary ethics training on legal and ethical content in communication and conflict resolution skills in health care decision making are reported. Recommendations are made for research on education and training of social workers, and investigation of the role and influence of systems in shaping social work involvement in end-of-life and palliative care.

Perspectives of potential donors on cord blood and cord blood cryopreservation: a survey of highly educated, pregnant Korean women receiving active prenatal care.

BACKGROUND: The aim of the study was to investigate the knowledge of cord blood (CB) and attitudes toward CB banking among high-potential donors (i.e., well-educated pregnant Koreans) because their voluntary donation is indispensable to the success of unrelated CB transplantation. STUDY DESIGN AND METHODS: Questionnaires examining perspectives on CB were distributed to and completed by 1001 women attending a maternity education program from April to October 2008; 863 women answered that they had heard of CB. We analyzed the 863 questionnaires to identify the sources of information, the plan for CB, the reasons for decisions, beliefs about the potential uses of CB, and knowledge about current therapeutic uses. RESULTS: Most subjects received information from promotional materials distributed by CB banks and the media; however, minimal information was obtained from obstetricians. More than 90% of women who planned to donate cited "altruism," and 75.0% of the "private preservation" group indicated that a desire to "safeguard for the future" was the reason for their decision. The probability of autologous CB transplantation (p = 0.001) and current usefulness were significantly overestimated in the private preservation group (p = 0.02). In addition, 56% of subjects underestimated the probability of identifying a matched CB in the public bank, and the overall rate of correct answers about current usefulness was 57.4%. CONCLUSIONS: A considerable portion of educated pregnant Korean women has more than minimal knowledge of CB, but the levels of knowledge regarding the potency of the public bank and the current usefulness and limitations of CB are generally low; in addition, obstetricians play insignificant roles in disseminating knowledge. Providing accurate and detailed information to pregnant women not only via brochures and the media and/or Internet but also by obstetricians would encourage CB donation.

Determinants of family consent to tissue donation.

BACKGROUND: Family consent to tissue donation currently falls well below that for solid organ donation. Moreover, research suggests that Americans have limited understanding of tissue donation, an activity largely overshadowed by the more publicly visible organ donation. This research sought to identify determinants of families' consent to tissue donation. METHODS: Data collection included a brief, self-administered survey completed by tissue bank staff and telephone interviews with family for a sample of tissue donor-eligible deaths reported to a national sample of 16 United States Tissue banks from 2003 to 2006. Family members (N = 1,418) and tissue bank staff (n = 226) involved in the tissue donation decision participated in the research. RESULTS: The families of 1,015 (71.6%) tissue donor-eligible patients consented to tissue donation; 403 (26.8%) families refused. Results revealed a multitude of associations between study variables and the donation decision. A subsequent multivariable analysis identified determinants of family consent to tissue donation, including the discussion of key donation-related issues during the request (adjusted odds ratio [AOR], 17.22; 95% confidence interval [CI], 11.61-25.54), the quality of communication during the request (AOR, 12.39; CI, 7.76-20.02), families' tissue donation attitudes and knowledge (AOR, 10.01; CI, 6.47-15.50), families' initial reactions to the request (AOR, 7.86; CI, 5.13-12.05), families' advance notice of the request (AOR, 3.95; CI, 2.41-6.46), and patient and family sociodemographic characteristics (AOR, 3.32; CI, 2.01-5.48). CONCLUSIONS: Family consent to tissue donation is affected by many of the same variables influencing consent to solid organ donation. Recommendations for practice are provided.

Postmortem tissue donation for research: a positive opportunity?

Previous research using human brain tissue has increased the understanding of many brain disorders, such as Alzheimer's disease and Creutzfeldt Jakob disease. However, there are other conditions, such as multiple sclerosis, which remain poorly understood and which require further investigation. The ongoing decline in the consented postmortem rate poses a threat to tissue collections and, consequently, future research. In the setting of the new Human Tissue legislation the authors set out to ascertain whether families recently and suddenly bereaved were willing to grant authorization for tissue samples and/or organs to be retained for research purposes at the time of medico-legal postmortem examination in adequate numbers to support the establishment of a brain and tissue bank. During the 2-year pilot phase of the project, 96% of families authorized retention of tissue samples for research and 17% agreed to whole brain donation. Respondents to a short questionnaire indicated that they were not further distressed by the approach and the majority were of the opinion that research donation should be offered to all bereaved families. This research concludes that the overwhelming majority of families who are recently and suddenly bereaved are willing to authorize research use of tissue taken at the time of postmortem examination.