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Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

Economic motivations are key drivers of human behavior. Unfortunately, they are largely overlooked in literature related to medical decisionmaking, particularly with regard to end-of-life care. It is widely understood that the directions of a proxy acting in bad faith can be overridden. But what of cases in which the proxy or surrogate appears to be acting in good faith to effectuate the patient’s values, yet doing so directly serves the decision-maker’s financial interests? Such situations are not uncommon. Many patients care as deeply about economic wellbeing of their families as they do for their own lives and health. This brief work examines three scenarios that raise ethical issues regarding the role of pecuniary motives in making critical medical decisions. Each scenario presents a potential financial conflict of interest between an incapacitated patient and a third-party decision-maker and offers a framework for integrating ethical and legal concerns into clinical care. It is our hope that this work prepares physicians for unexpected ethical conflicts of interest and enables them to further the interests of his or her patients.

The neuroendocrine carcinomas (NECs) of the head and neck are rare. The purpose of this article is to explore the diagnosis and treatment of NECs in the ear and larynx. We report a case of a patient with NECs found in the ear and throat simultaneously, and the relevant literatures are reviewed. It is difficult to identify which is the original site. There is no specific clinical manifestation of NECs in the ear and throat, and carcinoid syndrome is a rare situation. Surgery is still the preferred treatment for this disease. For patients with metastasis, radiotherapy and/or chemotherapy are required.

Background: With the rapid rise in opioid overdose-related deaths, state policy makers have expanded policies to increase the use of naloxone by emergency medical services (EMS). However, little is known about changes in EMS naloxone administration in the context of continued worsening of the opioid crisis and efforts to increase use of naloxone. This study examines trends in patient demographics and EMS response characteristics over time and by county urbanicity. Methods: We used data from the 2013–2016 National EMS Information System to examine trends in patient demographics and EMS response characteristics for 911-initiated incidents that resulted in EMS naloxone administration. We also assessed temporal, regional, and urban–rural variation in per capita rates of EMS naloxone administrations compared with per capita rates of opioid-related overdose deaths. Results: From 2013 to 2016, naloxone administrations increasingly involved young adults and occurred in public settings. Particularly in urban counties, there were modest but significant increases in the percentage of individuals who refused subsequent treatment, were treated and released, and received multiple administrations of naloxone before and after arrival of EMS personnel. Over the 4-year period, EMS naloxone administrations per capita increased at a faster rate than opioid-related overdose deaths across urban, suburban, and rural counties. Although national rates of naloxone administration were consistently higher in suburban counties, these trends varied across U.S. Census Regions, with the highest rates of suburban administration occurring in the South. Conclusions: Naloxone administration rates increased more quickly than opioid deaths across all levels of county urbanicity, but increases in the percentage of individuals requiring multiple doses and refusing subsequent care require further attention.

Unrepresented patients are individuals who lack decision makingcapacity and have no family or friends to make medical decisions for them. This population is growing in number in the United States, particularly within emergency and intensive care settings. While some bioethical discussion has taken place in response to the question of who ought to make decisions for these patients, the issue of how surrogate medical decisions ought to be made for this population remains unexplored. In this paper, we argue that standard applications of surrogate decision making principles in health care are not well suited to many unrepresented patients with long-term mental health diagnosis. We argue that when applied to this population, the substituted judgment standard, designed to preserve patient preferences and values, may lead to the exclusion of their preferences. We argue further that the application of the best interest standard runs the risk of leading to harmful cases of overtreatment or undertreatment. We offer an alternative interpretation of the best interest principle that is better able to promote the well-being of unrepresented patients, especially for those who lack capacity because of mental disorders. This alternative is based on the practices and principles of harm reduction and includes three components: emphasis on considering the expressed preferences of unrepresented patients, a focus on reducing harm as well as the delivery of clinical benefits, and a recognition of the importance of promoting trust.

This study explored factors influencing parents’ and adolescents’ decisions to initiate, continue, and discontinue medication for attention deficit hyperactivity disorder (ADHD). Three focus groups were conducted with parents (n = 23) of children with ADHD, and 2 with adolescents diagnosed with ADHD (n = 11). Parents and adolescents independently discussed the complexities surrounding their decisions to adhere to ADHD medication. Parents’ negative beliefs about medication (fear of side effects) discouraged them from initiating therapy. Once initiated, parents struggled in balancing the need to medicate (improvements in learning and behavior) and concerns (weight loss, perceived delayed development) about the medication. Parents who had more concerns about the medication were more in favor of discontinuation. For adolescents, the desire for self-expression without being medicated was the primary factor determining nonadherence and/or discontinuation of the medication. Adolescents’ medication-related concerns were relatively different from the parents. Phase- and group-specific interventions are required to improve medication adherence in people with ADHD.

Background: Facilitating patient conversion to hospice at end of life is a prominent clinical concern. Enrollment in outpatient palliative care services is often assumed to encourage seamless transition to hospice care, but this has not been demonstrated. Moreover, decisions to convert from palliative care to hospice are generally treated as dichotomous, thus hampering our ability to understand decision processes. Objective: To examine medical decision-making among patients who are prospectively evaluating whether to convert from palliative care to hospice. Design: Qualitative case study, using in-depth interviews and constant comparative method. Setting/Patients: Terminally ill patients currently enrolled in outpatient palliative care services (N = 26) and their caregivers (N = 16), selected purposely for maximum variation in condition and personal background. Measurements: Themes identified in qualitative in-depth interviews. Results: Patients rarely refused hospice outright but more often postponed using a “soft no,” in which they neither accepted nor overtly refused hospice. Justifications patients and caregivers offered for why hospice was not needed (yet) appeared in these themes: (1) not seeing the value added of hospice, (2) assuming the timing is premature, and (3) relying on extensive health-related support networks that justify or endorse continuation of active care. Conclusions: Despite assumptions to the contrary, benefits associated with utilization of outpatient palliative care services have the potential to incentivize the delay of hospice in some cases. Clinical interactions with outpatient palliative care patients should consider the influence of these broad social support systems when discussing hospice options.

A 4-day-old female was admitted into a Nigerian Hospital, with neonatal tetanus, jaundice, and sepsis. Four days into the treatment, her clinical condition continued to deteriorate. The family requ...

Background The public’s attitudes to conscientious objection (CO) are likely to influence political decisions about CO and trust towards healthcare systems and providers. Few studies examine the public’s attitudes in an in-depth way. Methods Six hypotheses about public attitudes to CO were devised and a questionnaire designed in order to test them. A total of 1617 Norwegian citizens completed the online questionnaire. Results Support for toleration of CO was strongest in the case of ritual circumcision of infant boys, lower for assisted dying and abortion. Attitudes to the procedure itself negatively predicted attitudes to CO for the procedure. Respondents were more accepting of CO to performing abortion than of CO to referrals for abortion. There was stronger support for CO as an outcome of local pragmatic arrangements than for CO as a statutory right. Conclusions Instead of viewing CO as a ‘moral safety valve’ or minority right which is due also to those with whom we disagree strongly, a portion of the public approaches the issue from the angle of what moral attitudes they deem acceptable to hold. The gap between this approach on the one hand and human rights principles on the other is likely to give rise to tensions in political processes whenever policies for CO are negotiated. © 2019. This is the authors' accepted and refereed manuscript to the article. The final authenticated version is available online at: https://doi.org/10.1177%2F1477750919851066

Introduction: Current guidelines recommend the placement of vascular access 6 months before the anticipated start of hemodialysis therapy; however, many patients start hemodialysis using a central venous catheter. We investigated the timing of referral for vascular access, the vascular access type at hemodialysis initiation, and the barriers to a timely referral. Methods: The study involved a retrospective review of 237 patients for whom the first vascular access for hemodialysis was created between January and November 2017. Results: Among the 237 patients, 58.2% were referred before hemodialysis initiation, while 41.8% were referred after hemodialysis initiation. Among the 138 patients, 55, 59, and 24 patients were referred more than 6 months, between 2 and 6 months, and within 2 months before hemodialysis initiation, respectively. Within these subgroups, 3.6%, 10.2%, and 75.0% patients underwent hemodialysis initiation with a central venous catheter, respectively. Among the 99 patients referred after hemodialysis initiation, the reasons for late referral were as follows: unexpected rapid progression of kidney disease (n = 23), noncompliance (n = 21), late visit to the nephrologist (initial visit within 2 months of hemodialysis initiation; n = 14), change of treatment strategy from peritoneal dialysis or transplants (n = 9), and unknown reasons (n = 32). Conclusion: Only 23% of patients were referred for vascular access 6 months before the anticipated hemodialysis therapy. In addition, 53% of patients initiated hemodialysis with a central venous catheter. Avoidance of catheter insertion was mostly successful in patients referred 2 months before hemodialysis initiation. The most common modifiable barrier to the timely referral was noncompliance.

The American Academy of Pediatrics California Chapter 3 created a 20-minute training video targeting barriers to strong provider recommendation of the human papillomavirus (HPV) vaccine. The video included clinical vignettes featuring pediatricians modeling counseling techniques with vaccine-hesitant families. Ninety-six multidisciplinary providers (including pediatric residents) at 6 sites viewed the video and completed baseline and posttest questionnaires assessing their vaccine knowledge, attitudes toward vaccination, and comfort with skills needed to facilitate vaccination. Following the intervention, providers had substantial and statistically significant ( P < .05) improvements in multiple areas assessed, particularly knowledge of the burden of HPV-related disease in males and changes in vaccine response with age; likelihood of “strongly agreeing” that vaccination should not be delayed beyond preadolescence and that HPV vaccine is safe; and feeling “very comfortable” counseling vaccine-hesitant parents and facilitating vaccine completion. This cost-effective and easily disseminated training modality shows promise in increasing provider comfort with HPV vaccine counseling.

The legal and ethical issues surrounding the care of children and young people in the perioperative setting are often vague and an anaesthetic practitioner could find themselves inadequately prepared for any issues that may arise. This paper details the case of an adolescent who withdrew her consent to surgery whilst in the anaesthetic room. It raises questions about Gillick Competency and whether the use of restraint is ever justified.

Patients' refusal of treatment based on the practitioner's ethnic identity reveals a clash of values: neutrality in medicine versus patient-centered care. Taking the Israeli-Palestinian conflict into account, this article aims at examining Israeli health care professionals' points of view concerning patients' refusal of treatment because of a practitioner's ethnic identity. Fifty in-depth interviews were conducted with 10 managers and 40 health care professionals, Jewish and Arab, employed at 11 public hospitals. Most refusal incidents recorded are unidirectional: Jewish patients refusing to be treated by Arab practitioners. Refusals are usually directed toward nurses and junior medical staff members, especially if recognizable as religious Muslims. Refusals are often initiated by the patients' relatives and occur more frequently during periods of escalation in the conflict. The structural competency approach can be applied to increase awareness of the role of social determinants in shaping patients' ethnic-based treatment refusals and to improve the handling of such incidents.

In this article, we present the experiences of discharging against medical advice from the perspectives of 17 hospital and community-based health care practitioners, and 16 patients, and relatives from a range of medical and surgical wards. Semistructured, in-depth interviews were conducted and thematically analyzed. We identified that practitioners, patients, and relatives frequently expressed empathy for each other during the interviews, and discharge against medical advice was presented as a way for patients to have control over their health. Contrary to predominantly negative framings that highlight increased mortality and morbidity, and portray people who discharge against medical advice as poor decision makers, we conclude discharge against medical advice can be framed positively. It can be an opportunity to empathize, empower, and care. We recommend that the vocabulary used in hospital discharge against medical advice policies and documents should be updated to reflect a culture of medicine that values patient autonomy, patient centeredness, and shared decision making.

Psychiatrists may be among the clinicians to encounter a depressed and suicidal patient who wishes to discontinue life-sustaining treatment. A patient who is suffering from a condition such as dysarthria makes decision-making capacity (a physician’s determination of a patient’s ability to medically consent) increasingly difficult to assess. The clinician must balance ethical principles of autonomy, non-maleficence, beneficence, and justice in order to achieve a plan of care that is in the patient’s best interest.

Aims. This article analyzes the digital childhood vaccination information network for vaccine-hesitant parents. The goal of this study was to explore the structure and influence of vaccine-hesitant content online by generating a database and network analysis of vaccine-relevant content. Method. We used Media Cloud, a searchable big-data platform of over 550 million stories from 50,000 media sources, for quantitative and qualitative study of an online media sample based on keyword selection. We generated a hyperlink network map and measured indegree centrality of the sources and vaccine sentiment for a random sample of 450 stories. Results. 28,122 publications from 4,817 sources met inclusion criteria. Clustered communities formed based on shared hyperlinks; communities tended to link within, not among, each other. The plurality of information was provaccine (46.44%, 95% confidence interval [39.86%, 53.20%]). The most influential sources were in the health community (National Institutes of Health, Centers for Disease Control and Prevention) or mainstream media ( New York Times); some user-generated sources also had strong influence and were provaccine (Wikipedia). The vaccine-hesitant community rarely interacted with provaccine content and simultaneously used primary provaccine content within vaccine-hesitant narratives. Conclusion. The sentiment of the overall conversation was consistent with scientific evidence. These findings demonstrate an online environment where scientific evidence online drives vaccine information outside of the vaccine-hesitant community but is also prominently used and misused within the robust vaccine-hesitant community. Future communication efforts should take current context into account; more information may not prevent vaccine hesitancy.

We developed this study to examine the issue of parental refusal of treatment, looking at the issue through a cultural competence lens. Recent cases in Canada where courts have declined applications by clinicians for court orders to overrule parental refusal of treatment highlight the dispute in this area. This study analyses the 16 cases of a larger group of 24 cases that were selected by a literature review where cultural or religious beliefs or ethnic identity was described as important reasons behind the refusal. The most significant finding was that nearly all of the cases cited unacceptable side effects as the main reason for declining treatment. We then analysed the detail of the cases and concluded that in the first instance a skilled clinical approach to develop an agreed management plan is by far the best approach. In the event that agreement cannot be reached we recommend engaging a mediator to help the clinician and parents/child to find an agreeable way forward. We argue that the option of seeking a court order was of significant detriment to many of the children in our cases and that this option should be used sparingly. There is a need for empirical research on the outcome of cases where a court order is sought.

PurposeThe acute-on-chronic exacerbations of end-stage respiratory diseases often result in prolonged hospital stays, relating these events to ethical conflicts in the fields of medical futility an...

The aim of this study was to ascertain the existence of written policies and common clinical practices in sexual health clinics in England for the management of men who have sex with men who refuse to test for HIV. All sexual health clinics in England ( n = 223) were invited to complete an online questionnaire in August–September 2014. The questionnaire covered the four domains of clinic policies, management practices, training and monitoring. We assess differences by region. Overall, 92 clinics participated. Only three clinics reported having a written policy. In contrast, most reported having a common agreed practice (94% in London vs. 71.6% elsewhere). When encountering a refusal, 72.2% of the London clinics and 53.4% of the clinics from elsewhere offered a less invasive option. Few clinics (17.4%) provided information on home sampling kits and 74.4% informed about other testing options. Eighty-seven per cent of the clinics recorded the occurrence of refusals, but only 37.8% reviewed the collected data. Providing staff with training was more common in London (94.1% vs. 73.8%). Clear policies should be developed to guide professionals when encountering men who have sex with men who refuse an HIV test. Offering less invasive testing options and information on alternative testing options could be easily introduced into routine practice. Efforts should be made to review monitoring data in order to identify implications of test refusals and introduce improvements in management of refusals.

We developed a novel open cardiopulmonary bypass (CPB) system, a drainage flow servo-controlled CPB system (DS-CPB), in which rotational speed of the main roller pump is servo-controlled to generate the same amount of flow as the systemic venous drainage. It was designed to safely decrease the priming volume while maintaining a constant reservoir level, even during fluctuations of the drainage flow. We report a successful use of a novel DS-CPB system in an elderly Jehovah’s Witness patient with dehydration who underwent mitral valve replacement.

Psychologists in medical settings may be confronted with Jehovah’s Witness parents refusing blood transfusions for their children as an ethical dilemma. The purpose of this discussion is to help psychologists provide informed, ethical consultations and support by investigating the values of the Jehovah’s Witness community and the origin of the blood transfusion taboo, how medical and legal professionals have approached this dilemma, exploring relevant ethical principles and standards for psychologists, and suggestions for how to move toward a better understanding of harm with Jehovah’s Witness families.

Despite the fact that many of the medical outcome data of peritoneal dialysis (PD) have been improving over the past few years, PD remains an underutilized modality in many countries worldwide. Most nephrologists in those countries report a high rate of patients’ refusal. We conducted this survey-based study to determine the obstacles behind underutilization of PD in Saudi Arabia from patients’ perspectives and to understand the reasons for their refusal. Nine-hundred and twenty hemodialysis (HD) patients, who had never been on PD before, participated in this study. Responses obtained from patients indicate that their refusal of PD could be because they had not received proper counseling and education about PD from their treating nephrologists throughout the course of their disease.

This report attempts to highlight that use of an antipsychotic and concurrent chronic use of methamphetamine can cause drug-induced parkinsonism. Methamphetamine is usually not encountered in the list of agents that induce drug-induced parkinsonism and so its consideration particularly during chronic use by a patient who is also on an antipsychotic is worthwhile because of its popularity as an illegal narcotic. This case report describes just such a case of drug-induced parkinsonism which is a subacute syndrome that mimics Parkinson’s disease. Although less alarming than dystonia, it is more common, more difficult to treat and can be the cause of significant disability during maintenance treatment especially in the elderly. In most cases, symptoms are reversible in days or weeks, but occasionally, especially in the elderly, or if long-acting injectable antipsychotics are used—as in this case—symptoms may last for weeks or months. The report also illustrates the neuronal workings due to chronic methamphetamine-use and the additive effects of dopamine blockade by antipsychotics such as haloperidol.

Aims and Background The primary objective was to assess the different reasons for refusal of surgical resection (SR) in patients with esophageal squamous cell cancer (ESCC), who were initially planned for neoadjuvant radiochemotherapy (N-RCT) + SR, but SR was not performed after N-RCT. Methods and Study Design From 1988 to 2011, 311 patients with ESCC were treated with N-RCT in a tertiary referral center for esophageal diseases. Fifty-three patients were analyzed who received RCT with 40–45 Gy and concomitant chemotherapy in neoadjuvant intention, but in whom the treatment was stopped or switched to definitive RCT due to progression, patient decision, or new findings. Results The reasons for refusal of SR for these 53 patients were as follows: ( 1 ) patients' or physicians' preference for the planned treatment was changed during the N-RCT, such that RCT was continued to a curative dose without a break (group 1, n = 23, 44%); ( 2 ) patients were restaged after 4 weeks, and the tumor board decided to continue RCT because RO resection was unlikely and/or patients were medically unfit (group 2, n = 15, 28%); ( 3 ) patients refused continuation of any treatment (group 3, n = 15, 28%). Refusal of SR was significantly more likely in patients with longitudinal tumor dimension >8 cm and those with an Eastern Cooperative Oncology Group performance status score of 2. Median follow-up time from the start of N-RCT was 57 months (range 1–137 months). The survival rates at 2 and 5 years were 36 ± 7% and 27 ± 7%, respectively. Group 1 had significantly longer survival. Conclusions The planned N-RCT+SR could not be completed in a considerable number of patients in a tertiary referral center. More strict selection criteria for multimodality treatment including SR could spare some of these patients an incomplete treatment and probably lead to increased utilization of definitive RCT.

Bichat Hospital's free and anonymous Voluntary Counseling and Testing centre in Paris is widely visited, with a high rate of HIV-positive diagnosis. This study proposed, in this centre, to describe the HIV newly-diagnosed patients over an 8-year period and to determinate risk factors for failure to return for a positive result. Higher risk for failure to return was found among the heterosexual subjects regardless of their socio-economic background.

We determined the retention rate of patients infected with HIV who resumed care after being tracked at the Infectious Diseases Clinic (IDC) in Kampala, Uganda. Between April 2011 and September 2013, patients who missed their clinic appointment for 8–90 days were tracked, and those who returned to the clinic within 120 days were followed up. The proportion of patients retained among tracked patients, and those who resumed care before tracking started was compared. At 18 months of follow up, 33 (39%) of the tracked patients and 72 (61%) of those who had resumed care before tracking started were retained in care. The most important cause of attrition among the traceable was self-transfer to another clinic (38 [73%] patients), whereas among those who resumed care before tracking was loss to follow up (LTFU) (32 [71%] patients). Tracked patients who resume care following a missed appointment are at high risk of attrition. To increase retention, antiretroviral therapy clinics need to adopt a chronic care model which takes into consideration patients’ changing needs and their preference for self-management.

Human papillomavirus (HPV) vaccine coverage among girls is low. We used data reported by parents of 4103 girls, 13 to 17 years old, to assess associations with, and reasons for, delaying or refusing HPV vaccination. Sixty-nine percent of parents neither delayed nor refused vaccination, 11% delayed only, 17% refused only, and 3% both delayed and refused. Eighty-three percent of girls who delayed only, 19% who refused only, and 46% who both delayed and refused went on to initiate the vaccine series or intended to initiate it within the next 12 months. A significantly higher proportion of parents of girls who were non-Hispanic white, lived in households with higher incomes, and had mothers with higher education levels, delayed and/or refused vaccination. The most common reasons for nonvaccination were concerns about lasting health problems from the vaccine, wondering about the vaccine’s effectiveness, and believing the vaccine is not needed.

Introduction: Prehospital emergency medicine is a specific field of emergency medicine. The basic approach of prehospital emergency medicine is to provide patients with medical intervention at the scene of the incident. This special environment causes health professionals to encounter various problems. One of the most important problems in this field is ethics, in particular questions involving refusal of treatment and the processes associated with it. Objective: The objective of this study is to identify emergency health professionals’ views regarding refusal of treatment. Methods: This study was conducted with 356 health professionals who were on active duty in prehospital emergency health services. The data were collected through a form which included 10 statements. The participants were asked to indicate their level of agreement with the statements given by rating them between 0 and 10. Ethical considerations: Before conducting the research, permission was received from the local ethics committee. Participants were given written information about the purpose of the study. Participants were assured that their participation was voluntary. Results: The healthcare professionals with fewer years of experience in the profession and female participants adopted an attitude of giving priority to providing care. Young participants, in general, respected patient autonomy. However, paradoxically, when it comes to emergency medical cases, they expressed an opinion closer to paternalism. Conclusions: This study has found that prehospital emergency health professionals generally respect the patient’s right to refuse treatment; however, they do not prioritize this right when there is a life-threatening situation or when the person does not have decision-making capacity. In these cases, prehospital emergency health professionals tended to adopt a more paternalistic approach.

When the Anglo-Boer War broke out in October 1899, Arthur Conan Doyle, a retired ophthalmologist, was already famous as the creator of Sherlock Holmes. Motivated by patriotism and adventure, Doyle joined the medical staff of a private field hospital endowed by philanthropist John Langman (1846–1928). Langman Hospital opened in Bloemfontein, South Africa, at the height of that city’s typhoid fever epidemic which raged from April to June 1900. There were nearly 5000 cases of typhoid and 1000 deaths but official statistics do not truly reflect the magnitude of the suffering. Doyle argued that the British Army had made a major mistake by not making antityphoid inoculation compulsory. Because of the new vaccine’s side effects, 95% of the soldiers refused immunization. Despite his strong opinions, Doyle failed to press the issue of compulsory inoculation when he testified before two Royal Commissions investigating the medical and military management of the war in South Africa. One can only imagine how the army might have benefited from the new idea of prophylactic vaccination in preventive medicine if Doyle had not let these opportunities slip away. As a consequence, antityphoid inoculation was still voluntary when Great Britain entered World War I in August 1914.

Jail inmates represent a high-risk, multineed population. Why do some jail inmates not access available programs and services? Drawn from a longitudinal study, 261 adults were assessed shortly upon incarceration and reassessed prior to transfer or release from a county jail. Of the participants in need of treatment, 18.5% did not participate in any formal treatment programs or religious programs and services. Untreated inmates were disproportionately young and male and less likely to report preincarceration cocaine dependence. Treatment participation varied little as a function of race or symptoms of mental illness. The most common reason for nonparticipation was the belief that one would not be around long enough to participate in programs. Other reasons were both institution-related and person-related in nature, including doubts about treatment efficacy, stigma concerns, lack of motivation, and lack of programs, especially addressing mental illness.

This integrative review aims to provide a synthesis of research findings of health-care professionals’ knowledge, attitudes and behaviours relating to patient capacity to consent to or refuse treatment within the general hospital setting. Search strategies included relevant health databases, hand searching of key journals, ‘snowballing’ and expert recommendations. The review identified various knowledge gaps and attitudinal dispositions of health-care professionals, which influence their behaviours and decision-making in relation to capacity to consent processes. The findings suggest that there is tension between legal, ethical and professional standards relating to the assessment of capacity and consent within health care. Legislation and policy guidance concerning capacity assessment processes are lacking, and this may contribute to inconsistencies in practice.

Objective To determine factors associated with patients refusing IV t-PA for suspected acute ischemic stroke (AIS), and to compare the outcomes of patients who refused t-PA (RT) with those treated with t-PA. Methods Patients who were treated with and refused t-PA at our stroke center were identified retrospectively. Demographics, clinical presentation, and outcome measures were collected and compared. Clinical outcome was defined as excellent (mRS: 0–1), good (mRS: 0–2), and poor (mRS: 3–6). Results Over 7·5 years, 30 (4·2%) patients refused t-PA. There were no demographic differences between the treated and RT groups. The rate of RT decreased over time (OR 0·63, 95% CI 0·50–0·79). Factors associated with refusal included a later symptom onset to emergency department presentation time (OR 1·02, 95% CI 1·01–1·03), lower NIHSS (OR 1·11, 95% CI 1·03–1·18), a higher proportion of stroke mimics (OR 17·61, 95% CI 6·20–50·02) and shorter hospital stay (OR 1·32, 95% CI 1·09–1·61). Among patients who were subsequently diagnosed with ischemic stroke, only length of stay was significantly shorter for refusal patients (OR 1·37, 95% CI 1·06–1·78). After controlling for mild strokes and stroke mimics, clinical outcome was not different between the groups (OR 1·61, 95% CI 0·69–3·73). Conclusion The incidence of patients refusing t-PA has decreased over time, yet it may be a cause for t-PA under-utilization. Patients with milder symptoms were more likely to refuse t-PA. Refusal patients presented later to the hospital and had shorter hospital stays. One out of six refusal patients (16·6%) had a stroke mimic.

Background:Parental concerns persist that immunization increases the risk of autism spectrum disorder, resulting in the potential for reduced uptake by parents of younger siblings of children with autism spectrum disorder (“younger sibs”).Objective:To compare immunization uptake by parents for their younger child relative to their older child with autism spectrum disorder (“proband”) and controls.Design:Immunization status was obtained for 98 “younger sibs,” 98 “probands,” and 65 controls.Results:A significant group difference emerged for overall immunization status (Fisher’s exact test = 62.70, p < .001). One or more immunizations in 59/98 younger sibs were delayed (47/98; 48%) or declined (12/98; 12.2%); immunizations were delayed in 16/98 probands (16.3%) and declined in only one. All controls were fully immunized, with only 6 (9.2%) delayed. Within the “younger sibs” group, 25/98 received an autism spectrum disorder diagnosis; 7 of whom (28%) were fully immunized. The rates of autism spectrum disorder diagnosis did not differ between immunized and nonimmunized younger sib groups, although small sample size limits interpretability of this result.Conclusion:Parents who already have one child with autism spectrum disorder may delay or decline immunization for their younger children, potentially placing them at increased risk of preventable infectious diseases.

Background Clinical trials (CTs) are the mechanism by which research is translated into standards of care. Low recruitment among underserved and minority populations may result in inequity in access to the latest technology and treatments, compromise the generalizability, and lead to failure in identification of important positive or negative treatment effects among under-represented populations. Methods Data were collected over a 39-month period on patient eligibility for available therapeutic cancer CTs. Reasons for ineligibility and refusal were collected. The data were captured using an automated software tool for tracking eligibility pre-enrollment. We examined characteristics associated with being evaluated for a trial, and reasons for ineligibility and refusal, overall and by patient race. Results African-Americans (AAs) were more likely than Whites to be ineligible (odds ratio, (OR) = 1.26, 95% confidence interval (CI) = 1.0–1.58) and if eligible, to refuse participation (OR = 1.79, 95% CI = 1.27–2.52), even after adjusting for insurance, age, gender, study phase, and cancer type. White patients were more likely to be ineligible due to study-specific or cancer characteristics. AAs were more likely to be ineligible due to mental status or perceived noncompliance. Whites were more likely to refuse due to extra burden, due to concerns with randomization and toxicity, or because they express a positive treatment preference. AAs were more likely to refuse because they were not interested in CTs, because of family pressures, or they felt overwhelmed (NS)). Discussion This study is the first to directly compare ineligibility and refusal rates and reasons captured prospectively in AA and White cancer patients. The data are consistent with earlier studies that indicated that AA patients more often are deemed ineligible and, when eligible, more often refuse participation. However, differences in reasons for ineligibility and refusal by race have implications for a cancer center to participate in CTs appropriate for the population of patients served. On a broader scale, consideration should be given to modifying eligibility criteria and other design aspects to permit broader participation of minority and other underserved groups.

There is considerable confusion over the status of ‘do not attempt resuscitation’ (DNAR) orders. David Tracey's claim against Addenbrookes hospital, in which he claims that the Trust unlawfully inserted a DNAR order into his wife's notes, without consulting with her or him, has brought the issue into the public eye.1 A DNAR order is a statement in the patient's notes to the effect that cardiopulmonary resuscitation (CPR) should not be attempted. This article analyses the legal status of such orders, and outlines some ethical and practical corollaries. ‘DNAR order’ is not a legal term: it refers to two types of direction which are legally very different. The first (which we will call ‘type 1’) is a clinical decision for a patient who lacks capacity: a decision that should be made in the patient's best interests at the time of cardiac arrest. The second (‘type 2’) is an advance decision to refuse resuscitation made by the patient when capacitous and binding on clinicians if valid, and if applicable to the circumstances.

This case study reports on a rare case of malignant fibrous histiocytoma arising in the right spermatic cord. An 80-year-old male presented with a 2-week history of a right inguinal mass, with mild pain in the same region. Ultrasonography and computed tomography showed a mass arising from the right spermatic cord. A right radical orchiectomy was performed with wide dissection of the mass; the right testicle and epididymis were found not to be grossly involved. The patient had an uneventful postoperative course and recovered well. The patient and his family refused further adjuvant radiotherapy. There was no evidence of recurrence or metastasis during 20 months of regular follow-up. The diagnosis, histological classification, treatment and prognosis of this case are presented, together with a review of the literature.

Using a three-dimensional ethical role-specific model, this article considers the dual loyalty conflict between following military orders and professional codes of practice in an operational military environment when a patient soldier refuses life-saving medical treatment and where their legal capacity is questionable. The article suggests that although every competent patient has the right to refuse medical treatment even though they may die as a consequence. Ordinarily, it is unethical to exert any undue influence on a patient to accept medical treatment, in a military operational environment where attack from the enemy is likely, it may be reasonable and understandable to exert undue influence over a patient when they lack legal capacity.

This study evaluates the risk factors for the abandonment of antiretroviral therapy (ART) among patients receiving care in an AIDS clinic in Vitória, Brazil. We conducted a case–control study of patients with AIDS attending a reference center for sexually transmitted disease (STD)/AIDS. A total of 62 patients, who abandoned therapy in 2008, and 188 HIV-infected patients answered an interview including demographic, social, and clinical characteristics. Risk factors associated with abandon in univariate analysis were entered into logistic regression models. A total of 250 patients were included in the study. Groups were similar regarding age, gender, and monthly income. In the final multivariate model, illicit drug use (adjusted odds ratio [AOR], 2.3; 95% confidence interval [CI], 1.03-5.07), previous abandon of medication (AOR 38.6; 95% CI 10.49-142.25), last CD4 count 3 (AOR 1.5; 95% CI 1.03-2.10), and viral load higher than 1000 copies/mL (AOR 2.0 (95% CI 1.34-3.09) were independent predictors of abandonment of ART. In addition to the clinical indicators, behavioral factors remained important throughout the multivariate analysis in our study.

Objective. We evaluated the association between parents' beliefs about vaccines, their decision to delay or refuse vaccines for their children, and vaccination coverage of children at aged 24 months. Methods. We used data from 11,206 parents of children aged 24–35 months at the time of the 2009 National Immunization Survey interview and determined their vaccination status at aged 24 months. Data included parents' reports of delay and/or refusal of vaccine doses, psychosocial factors suggested by the Health Belief Model, and provider-reported up-to-date vaccination status. Results. In 2009, approximately 60.2% of parents with children aged 24–35 months neither delayed nor refused vaccines, 25.8% only delayed, 8.2% only refused, and 5.8% both delayed and refused vaccines. Compared with parents who neither delayed nor refused vaccines, parents who delayed and refused vaccines were significantly less likely to believe that vaccines are necessary to protect the health of children (70.1% vs. 96.2%), that their child might get a disease if they aren't vaccinated (71.0% vs. 90.0%), and that vaccines are safe (50.4% vs. 84.9%). Children of parents who delayed and refused also had significantly lower vaccination coverage for nine of the 10 recommended childhood vaccines including diphtheria-tetanus-acellular pertussis (65.3% vs. 85.2%), polio (76.9% vs. 93.8%), and measles-mumps-rubella (68.4% vs. 92.5%). After adjusting for sociodemographic differences, we found that parents who were less likely to agree that vaccines are necessary to protect the health of children, to believe that their child might get a disease if they aren't vaccinated, or to believe that vaccines are safe had significantly lower coverage for all 10 childhood vaccines. Conclusions. Parents who delayed and refused vaccine doses were more likely to have vaccine safety concerns and perceive fewer benefits associated with vaccines. Guidelines published by the American Academy of Pediatrics may assist providers in responding to parents who may delay or refuse vaccines.

Pulmonary rehabilitation is an essential component of care for people with chronic obstructive pulmonary disease (COPD) and is supported by strong scientific evidence. Despite this, many people with COPD do not complete their program or choose not to attend at all. The aim of this study was to determine the factors associated with uptake and completion of pulmonary rehabilitation for people with COPD. Seven electronic databases were searched for qualitative or quantitative studies that documented factors associated with uptake and completion of pulmonary rehabilitation in people with COPD. Two reviewers independently extracted data, which was synthesized to provide overall themes. Travel and transport were consistently identified as barriers to both uptake and completion. A lack of perceived benefit of pulmonary rehabilitation also influenced both uptake and completion. The only demographic features that consistently predicted non-completion were being a current smoker (pooled odds ratio 0.17, 95% confidence interval 0.10 to 0.32) and depression. The limited data available regarding barriers to uptake indicated that disruption to usual routine, influence of the referring doctor and program timing were important. In conclusion poor access to transport and lack of perceived benefit affect uptake of pulmonary rehabilitation. Current smokers and patients who are depressed are at increased risk of non-completion. Enhancing attendance in pulmonary rehabilitation will require more attention to transportation, support for those at risk of non-completion and greater involvement of patients in informed decisions about their care.

The workshop considered 5 questions related to oral lesions, HIV phenotypes, and the management of HIV-related disease, with a focus on evidence and challenges in resource-poor settings. First, are oral lesions unique with respect to geographic location or phenotype? Second, how useful would an oral lesion index be to predict HIV in resource-poor countries with no access to CD4 counts or viral load? Third, what are the latest methods and delivery modes for drugs used to treat oral lesions associated with HIV? Fourth, what is the role of the oral health care worker in rapid diagnostic testing for HIV? Fifth, what ethical and legal issues are to be considered when managing the HIV patient? The consensus of the workshop was the need for additional research in 4 key areas in developing countries: (1) additional investigation of comorbidities associated with HIV infection that may affect oral lesion presentation and distribution, especially in pediatric populations; (2) the development of region-specific algorithms involving HIV oral lesions, indicating cumulative risk of immune suppression and the presence of HIV disease; (3) well-designed clinical trials to test new therapies for oral lesions, new treatments for resistant oral fungal and viral diseases, effectiveness of therapies in children, and new drug delivery systems; and (4) the role of the oral health care worker in rapid diagnostic testing for HIV in various regions of the world.

Objective: The main objective of this paper is to compare the mental health Acts of the eight Australian jurisdictions and the 13 Canadian jurisdictions on three major issues: involuntary admission criteria, treatment authorization/consent and compulsory treatment in the community, in the light of international trends towards patients’ rights.Method: The legislation was examined against the background of rights instruments such as the Canadian Charter of Rights and Freedoms and the United Nations Convention on the Rights of Persons with Disabilities.Results: It was found that some Canadian involuntary admission criteria require the likelihood of bodily harm whereas all Australian Acts have broad harm and deterioration criteria. Unlike all Australian jurisdictions, some Canadian jurisdictions allow for the refusal of treatment that may be required for discharge. In addition, Canadian community treatment orders are much more restrictive than in Australia because they require a person to have considerable previous hospitalization despite meeting the committal criteria. Australian jurisdictions can use community treatment orders as a least restrictive alternative to inpatient status without prior hospitalization.Conclusions: The paper concludes that there are significant philosophical differences regarding the purpose of involuntary admission between Australian and some Canadian jurisdictions where treatment refusal is possible. Australian mental health Acts have a relatively stronger ‘treatment’ focus than some Canadian Acts. The apparently stronger ‘rights’ focus of some Canadian laws (such as the permission of treatment refusal) can paradoxically result in a denial of liberty rights. The way in which the relevant legislation is shaped in both countries will increasingly be affected by international trends towards the rights of individuals with disabilities.

Recent cases have drawn attention to the issue of individual autonomy and what is sometimes referred to as ‘the right to die’. Adult patients who are mentally competent have the right to refuse medical treatment even when that refusal can lead to worsening ill health and even death. This refusal of treatment may only be ignored when statutory law provides for treatment without consent, or a judge makes an order that overrides the patient's consent. While this is largely accepted when patients are physically and mentally competent, it becomes a complex issue when a person is mentally competent but due to physical incapacity are in care because they are unable to care for themselves.