Sexuality Among Adolescents With Intellectual Disability: Balancing Autonomy and Protection.

Adolescents and young adults living with intellectual disability (ID) have made significant advancements integrating into multiple aspects of western society, but there has been less progress with regards to sexual health. While advocating for individuals with ID to live life to the fullest, pediatricians have practical concerns regarding the ability to consent to sex as well as avoid coercion and manipulation in sexual encounters. This has led to tension between supporting the autonomy of a patient with ID while protecting them from harm. We present a case of a young adult with moderate ID who is engaging in a sexual relationship with her boyfriend without parental knowledge. The pediatrician must decide the most appropriate course of action to support the patient's autonomy but also ensure that the patient is a willing participant and understands the risks of engaging in sexual activity. This case highlights 4 main themes: (1) practical concerns when approaching sexual health in the adolescent with ID, (2) advocating for the rights of those with ID to live life to the fullest, (3) the critical inclusion of individuals with ID in decisions directly affecting them and their peer group, and (4) decision-making capacity and respect for autonomy in individuals with ID. This case highlights the delicate balance providers face when providing care to adolescents and young adults with ID: supporting autonomy to make decisions while reducing harm to a vulnerable population.

Admission of a minor to a psychiatric hospital under Polish law. Part I. / Przyjecie maloletniego do szpitala psychiatrycznego w mysl polskiego prawa. Czesc I.

Within the scope of mental health protection, numerous practical problems arise concerning the issue of providing health services to a minor. Admission of a minor to a psychiatric hospital is associated in practice with numerous doubts. This part of the article describes the conditions of admission to hospital with the consent of the patient. It distinguishes and accurately describes situations where a minor is under or over 16 years of age. In addition, it explains situations where there is a contradiction of declarations of will by legal guardians in relation to admission, their inability to perform legal acts, or a contradiction of the statements of the minor and guardian. It also addresses the aspect of receiving written consent during the COVID-19 epidemic.

Managing mental incapacity in the 20th century: A history of the Court of Protection of England & Wales.

This article explores the history of the Court of Protection of England & Wales (CoP) over the twentieth century. The CoP, which is responsible for making financial and welfare decisions on behalf of those deemed incapable of doing so themselves, presently faces a rapidly growing caseload, and considerable scrutiny and critique. Such close attention to its work may be new, but many of the issues it faces have deep roots. Using practitioners' texts, judgements, and the archives of the CoP and the Lord Chancellor's Office, I review the evolution of the CoP in terms of its structure and caseload, its decisions regarding incapacity, its efforts to manage the affairs of those found incapable, and its long-term survival. This reveals the origins of many of the issues it faces today, the different anxieties and approaches that have animated its work in the past, the ways in which approaches to incapacity have changed, and the value of a historical perspective.

How the Guardianship System Can Help Address Gun Violence.

This article shows how state guardianship law can provide a mechanism for courts to reduce gun violence by removing the right to possess firearms from individuals found, after hearing and due process, to be incapable of safely possessing them. It explores how this often overlooked body of law not only complements extreme risk protection orders where they exist, but can also be used to accomplish a portion of what such orders are designed to do in states that have not authorized them. It concludes by suggesting some modest adjustments to guardianship law and practice that would help ensure that guardianship systems interventions in this arena are fair and effective.

Chemical restraint of adults with intellectual disability and challenging behaviour in Queensland, Australia: Views of statutory decision makers.

BACKGROUND: Psychotropic medication is widely prescribed to treat mental illness. However, it is controversial when used as a chemical restraint (CR) to manage challenging behaviours (CBs) of adults with intellectual disability (ID). CR has potentially negative consequences and affects human rights. METHOD: Qualitative research conducted between 2014 and 2015 explored the views of 'guardian' decision makers appointed under unique Queensland legislation oversighting the use of CR. RESULTS: Findings included (1) negative conceptualization of CR, (2) concerning relationships with prescribers and disability sector staff, (3) challenges to information seeking about people with ID prescribed CR and (4) problematic implementation of positive behaviour support plans. CONCLUSION: According to guardians, CR may be used in lieu of community supports, and prescribers sometimes diagnose mental illness to avoid CR legislative requirements. Guardians, prescribers and professionals would benefit from training that addresses the intersection between physical and mental health, CB and CR.

End-of-Life Decision Making and Treatment for Patients with Professional Guardians.

OBJECTIVES: Concerns have repeatedly been raised about end-of-life decision making when a patient with diminished capacity is represented by a professional guardian, a paid official appointed by a judge. Such guardians are said to choose high-intensity treatment even when it is unlikely to be beneficial or to leave pivotal decisions to the court. End-of-life decision making by professional guardians has not been examined systematically, however. DESIGN: Retrospective cohort study. SETTING: Inpatient and outpatient facilities in the Department of Veterans Affairs (VA) Connecticut Healthcare System. PARTICIPANTS: Decedent patients represented by professional guardians who received care at Connecticut VA facilities from 2003 to 2013 and whose care in the last month of life was documented in the VA record. MEASUREMENTS: Through chart reviews, we collected data about the guardianship appointment, the patient's preferences, the guardian's decision-making process, and treatment outcomes. RESULTS: There were 33 patients with professional guardians who died and had documentation of their end-of-life care. The guardian sought judicial review for 33%, and there were delays in decision making for 42%. In the last month of life, 29% of patients were admitted to the intensive care unit, intubated, or underwent cardiopulmonary resuscitation; 45% received hospice care. Judicial review and high-intensity treatment were less common when information about the patient's preferences was available. CONCLUSION: Rates of high-intensity treatment and hospice care were similar to older adults overall. Because high-intensity treatment was less likely when the guardian had information about a patient's preferences, future work should focus on advance care planning for individuals without an appropriate surrogate. J Am Geriatr Soc 67:2161-2166, 2019.

Citizenship, Vulnerability and Mental Incapacity in England, 1900-1960s.

Over the twentieth century, the Lunacy Office (renamed the Court of Protection in 1947) was responsible for appointing 'receivers' to manage the property of adults in England who were found incapable of managing their own affairs. Tens of thousands of people were in this position by the 1920s, and numbers continued to grow until after Second World War. This article uses the archives of the Office to examine the evolution of the concept of mental incapacity over the first half of the twentieth century, offering a corrective to the popular impression that the time before the Mental Capacity Act of 2005 was an era of ignorance and bad practice. It examines the changing ways in which being 'incapable' was understood and described, with particular reference to shifting ideas of citizenship. I argue that incapacity was not always seen as absolute or permanent in the first half of the century, that models of incapacity began to include perceived vulnerability in the interwar period and that women in particular were seen in this way. From the 1940s, though, the profile of those found incapable was changing, and the growing welfare state and its principles of employment and universality saw the idea of incapacity narrowing and solidifying around knowledge deficits, especially among the elderly. This brings the history of the Lunacy Office into the twentieth century and connects it to current concerns around assessments of mental capacity today.

Procedural and material aspects of the protection of the rights of a person subject to proceedings for legal incapacitation - Part II. / Procesowe i materialne aspekty ochrony praw osoby, wobec której toczy sie postepowanie o ubezwlasnowolnienie ­ czesc II.

The aim and effect of the procedure for legal incapacitation is to ensure the widest possible social integration and the widest possible autonomy of the incapacitated person; the procedure should provide the disabled person with full procedural guarantees enabling him or her to have a fair hearing and to make an equitable decision, not only regarding the issue of incapacitation, but also on the revocation of the incapacitation or on a change in the type of incapacitation. In the first part of the paper, we presented the problem of legal incapacitation, answered questions about who could initiate the proceedings for legal incapacitation, who could be a participant of such proceedings, whether issuing a certificate of health condition is a necessity, and we presented the procedural aspect of protecting the rights of a person against whom proceedings for incapacitation are pending. In the second part of the manuscript, we described the characteristics of the institution of temporary advisor and guardian ad litem as well as the material aspect of protecting the rights of a person against whom proceedings for incapacitation are pending.

Is Guardian Permission a Barrier to Online Sexual Health Research Among Adolescent Males Interested in Sex With Males?

Institutional review boards (IRBs) that refuse to grant waivers of guardian permission may hinder research to inform needed online sexual health interventions for adolescent males interested in sex with males (AMSM). Information on the challenges of obtaining (or waiving) guardian permission is imperative. In June and July 2017, AMSM (N = 206; ages 14 to 17) in the United States completed an online survey on sexual behaviors, sexually explicit media use, and sexual education exposure/needs. A mixed-methods approach assessed attitudes toward guardian permission for the current survey and future online sexual health intervention research. Logistic regression models assessed differences by "outness" to a guardian. A framework matrix analysis was conducted to summarize, then aggregate, qualitative responses. Findings indicated that most AMSM would not participate if guardian permission was required (current: 83%; future: 87%). Youth who were not out were more likely to say they would not participate (current: adjusted odds ratio [AOR] = 2.8, 95% confidence interval [CI]: 1.2 to 6.8); future: AOR = 4.7, 95% CI: 1.6 to 13.5). Participants reported that guardian permission would be an invasion of their privacy, lead to involuntary outing, and endanger participants. Overall, guardian permission appears to be a barrier to AMSM participation in online sexual health research. Investigators and IRBs should consider alternative practices and policies to facilitate such research.

[The law of March 5, 2007 and the care of persons placed under guardianship]. / La prise en charge médicale des personnes sous tutelle à la lumière de la loi du 5 mars 2007.

The care of persons placed under guardianship has changed considerably since the law of March 5, 2007, as greater autonomy is granted to them. By advocating greater autonomy of protected adults, the French Civil Code is in opposition with the French Public Health Code since the latter states that the systematic consent of the guardian is required in addition to that of the protected adult for so-called general care. In cases of serious injury to bodily integrity, the guardianship judge's opinion must be sought by the guardian. For some specific medical procedures (medically assisted procreation, abortion, etc.), the consent of the guardian does not seem necessary. A protected adult can now, if he/she is able to understand the information, with the agreement of the guardianship judge or the family council, appoint a trusted person and draft advance directives without possible representation by the guardian. The legislator promotes greater autonomy while not neglecting their protection. It also helps relieve the guardian, who is generally trained in asset management, of sometimes difficult medical decisions. Harmony between the Civil Code and the Public Health Code seems essential so as to move towards greater autonomy of the person under guardianship in the care relationship.

Medical Decision-Making for Adults Who Lack Decision-Making Capacity and a Surrogate: State of the Science.

BACKGROUND: Adults who lack decision-making capacity and a surrogate ("unbefriended" adults) are a vulnerable, voiceless population in health care. But little is known about this population, including how medical decisions are made for these individuals. OBJECTIVE: This integrative review was to examine what is known about unbefriended adults and identify gaps in the literature. METHODS: Six electronic databases were searched using 4 keywords: "unbefriended," "unrepresented patients," "adult orphans," and "incapacitated patients without surrogates." After screening, the final sample included 10 data-based articles for synthesis. RESULTS: Main findings include the following: (1) various terms were used to refer to adults who lack decision-making capacity and a surrogate; (2) the number of unbefriended adults was sizable and likely to grow; (3) approaches to medical decision-making for this population in health-care settings varied; and (4) professional guidelines and laws to address the issues related to this population were inconsistent. There have been no studies regarding the quality of medical decision-making and its outcomes for this population or societal impact. CONCLUSION: Extremely limited empirical data exist on unbefriended adults to develop strategies to improve how medical decisions are made for this population. There is an urgent need for research to examine the quality of medical decision-making and its outcomes for this vulnerable population.

The Burden of Guardianship: A Matched Cohort Study.

BACKGROUND: In cases where patients are unable to provide informed consent and have no surrogate decisionmaker, a hospital must seek guardian appointment as a legally recognized surrogate decision-maker. OBJECTIVE: The aim of this study was to examine the magnitudes of length of stay (LOS) beyond medical clearance and healthcare costs among patients referred for guardianship. DESIGN, SETTING, PATIENTS: This was a retrospective cohort study of all 61 adult inpatients in a single tertiary care hospital requiring guardianship between October 1, 2014, and September 30, 2015, matched with up to 3 controls from the same discharging services and hospitalized for at least as long as the date of clearance for referred patients. MEASUREMENTS: The following parameters were measured using generalized estimating equations: total LOS, LOS beyond medical clearance (excess LOS), medical complications, and total charges among referred patients, and the LOS and costs were compared with those of matched controls. RESULTS: Mean LOS for patients requiring guardianship was 31 ± 2 days, and the total charges averaged $179,243 ± 22,950. We documented 12 hospital-acquired complications in 10 (16%; 95% confidence interval [CI], 8%-28%) unique patients. Accounting for potential confounders, the process of obtaining guardianship was associated with a 37% longer total LOS (95% CI [12%- 67%]; P = .002), 58% higher excess LOS (95% CI [2%- 145%]; P = .04), and 23% higher total charges (95% CI [4%-46%]; P = .02). CONCLUSIONS: In this single-center cohort study, the guardianship process was associated with prolonged hospital stay and higher total hospital charges even when compared with matched controls. Furthermore, one in six patients suffered from a hospital-associated complication after medical clearance.

Staff awareness of the application of Mental Health and Guardianship Legislation in the care of hospitalised older persons.

OBJECTIVE: The study aimed to survey hospital staff knowledge of the application of the Mental Health Act 2007 (NSW) (MHA) and the Guardianship Act 1987 (NSW) (GA) in the care and treatment of older persons in a teaching hospital in Sydney. Method Over a two-month period in 2017, a survey questionnaire was distributed to staff involved in older persons' care across the hospital. RESULTS: The majority of the hospital staff demonstrated basic theoretical knowledge of both the GA (76%) and of the MHA (84.5%). Fewer (64.5%) appeared to understand the practical application of the MHA in the hypothetical clinical situations. An even lower proportion of staff appeared to understand the application of the GA either to obtain consent for medical treatment or to appoint a guardian through the Guardianship Division of the NSW Civil and Administrative Tribunal (NCAT). CONCLUSION: Although clinical staff of the hospital displayed fair knowledge and awareness about the application of the MHA and the GA to inpatient care of older adults, further education is necessary, particularly about the application of the GA. The authors suggest similar findings may occur at other New South Wales hospitals, which may raise concern and need for education.

'Everyone has an agenda': Professionals' understanding and negotiation of risk within the Guardianship system of Victoria, Australia.

It is frequently asserted that pressures to assess and manage risk have eroded the therapeutic, rights-based foundation of the human services profession. Some argue that human service workers operate in a culture of fear in which self-protection and blame avoidance, rather than clients' needs, primarily drive decision-making. In the field of Adult Guardianship, it has been suggested that organisational risk avoidance may be motivating applications for substitute decision-makers, unnecessarily curtailing clients' rights and freedoms. However, the absence of research examining the operation of risk within Guardianship decision-making inhibits verifying and responding to this very serious suggestion. This article draws on semi-structured interviews conducted with 10 professionals involved in the Victorian Guardianship system, which explored how issues of risk are perceived and negotiated in everyday practice. Risk was found to be a complex and subjective construct which can present both dangers and opportunities for Guardianship practitioners and their clients. While a number of participants reported that Guardianship might sometimes operate as an avenue for mitigating the fear and uncertainty of risk, most participants also valued positive risk-taking and were willing, in their clients' interests, to challenge conservative logics of risk. These findings highlight the need for further research which examines how service providers and policy makers can create spaces that support open discussions around issues of risk and address practitioners' sense of fear and vulnerability.

Going it Alone: A Scoping Review of Unbefriended Older Adults.

Older adults who have reduced decision-making capacity and no family or friends to compensate for these deficiencies are known as unbefriended and require a public guardian. The purpose of this study was to review the peer-reviewed and grey literature to determine the scope of available research on unbefriended older adults in Canada and the United States. We found limited research examining unbefriended older adults. No Canadian studies or reports were located. Unbefriended older adults were childless or had fewer children, were more cognitively impaired, and were older than older adults who were not unbefriended. These findings demonstrate a stark scarcity of studies on unbefriended older adults. Research is urgently needed using standardized data collection of guardianship status in order to enable studies of the prevalence of public guardianship in Canada.

[Treatment against the patient's will exemplified by electroconvulsive therapy : Clinical, legal and ethical aspects]. / Behandlung gegen den natürlichen Willen am Beispiel der Elektrokonvulsionstherapie : Klinische, juristische und ethische Aspekte.

BACKGROUND: Severe affective and psychotic disorders may be accompanied by legal incapacity. If in this case the patient refuses treatment and in parallel there is a risk of serious damage to health, treatment can be carried out against the patient's non-autonomous will under defined prerequisites. Due to its good and partly superior effectiveness in the treatment of severe and pharmacotherapy-resistant affective and psychotic disorders, electroconvulsive therapy (ECT) is an important treatment option in such constellations. AIM: Description of the general principles and prerequisites of therapeutic measures against the patient's will. METHODS: Based on a case report, the application of ECT as a medical measure against the patient's will is discussed and assessed in an interdisciplinary approach from clinical, legal, and ethical perspectives. RESULTS AND DISCUSSION: The (empirical) evidence on the general effectiveness of ECT, as well as its application against the will of patients with legal incapacity, clearly shows a positive benefit-risk ratio. When performed against the patient's will, ECT as all compulsory medical interventions, represents a severe encroachment on the individual's fundamental rights of both physical integrity and self-determination. Nevertheless, its application may be medically indicated, legally admissible and ethically appropriate in individual cases to prevent the threat of serious damage to the patient's health. Ethical and legal prerequisites of treatment against the patient's will should be evaluated by a multiprofessional team and the patient's legal guardian should be involved from an early stage.

[Advance directives in clinical practice : Living will, healthcare power of attorney and care directive]. / Vorausverfügungen im klinischen Alltag : Patientenverfügung, Vorsorgevollmacht und Betreuungsverfügung.

In clinical practice, situations continuously occur in which medical professionals and family members are confronted with decisions on whether to extend or limit treatment for severely ill patients in end of life treatment decisions. In these situations, advance directives are helpful tools in decision making according to the wishes of the patient; however, not every patient has made an advance directive and in our experience medical staff as well as patients are often not familiar with these documents. The purpose of this article is therefore to explain the currently available documents (e.g. living will, healthcare power of attorney and care directive) and the possible (legal) applications and limitations in the routine clinical practice.

Informed decision-making with and for people with dementia - efficacy of the PRODECIDE education program for legal representatives: protocol of a randomized controlled trial (PRODECIDE-RCT).

BACKGROUND: In Germany, the guardianship system provides adults who are no longer able to handle their own affairs a court-appointed legal representative, for support without restriction of legal capacity. Although these representatives only rarely are qualified in healthcare, they nevertheless play decisive roles in the decision-making processes for people with dementia. Previously, we developed an education program (PRODECIDE) to address this shortcoming and tested it for feasibility. Typical, autonomy-restricting decisions in the care of people with dementia-namely, using percutaneous endoscopic gastrostomy (PEG) or physical restrains (PR), or the prescription of antipsychotic drugs (AP)-were the subject areas trained. The training course aims to enhance the competency of legal representatives in informed decision-making. In this study, we will evaluate the efficacy of the PRODECIDE education program. METHODS: A randomized controlled trial with a six-month follow-up will be conducted to compare the PRODECIDE education program with standard care, enrolling legal representatives (N = 216). The education program lasts 10 h and comprises four modules: A, decision-making processes and methods; and B, C and D, evidence-based knowledge about PEG, PR and AP, respectively. The primary outcome measure is knowledge, which is operationalized as the understanding of decision-making processes in healthcare affairs and in setting realistic expectations about benefits and harms of PEG, PR and AP in people with dementia. Secondary outcomes are sufficient and sustainable knowledge and percentage of persons concerned affected by PEG, FEM or AP. A qualitative process evaluation will be performed. Additionally, to support implementation, a concept for translating the educational contents into e-learning modules will be developed. DISCUSSION: The study results will show whether the efficacy of the education program could justify its implementation into the regular training curricula for legal representatives. Additionally, it will determine whether an e-learning course provides a valuable backup or even alternative learning strategy. TRIAL REGISTRATION: TRN: ISRCTN17960111 , Date: 01/06/2017.