Exploring knowledge, attitude, and intention towards advance care planning, advance directive, and the patient self-determination act among hemodialysis patients.

BACKGROUND: Hemodialysis holds the highest incidence and prevalence rate in Taiwan globally. However, the implementation of advance care planning (ACP), advance directives (AD), and patient self-determination acts (PSDA) remains limited. Our objective was to examine the current status of ACP, AD and PSDA and potential opportunities for enhancement. METHODS: We developed a novel questionnaire to assess individuals' knowledge, attitudes, and intentions regarding ACP, AD, and PSDA. We also collected baseline characteristics and additional inquiries for correlation analysis to identify potential factors. Student's t-test and Analysis of Variance were employed to assess significance. RESULTS: Initially, a cohort of 241 patients was initially considered for inclusion in this study. Subsequently, 135 patients agreed to participate in the questionnaire study, resulting in 129 valid questionnaires. Among these respondents, 76 were male (59.9%), and 53 were female (41.1%). Only 13.2% had signed AD. A significant portion (85.3%) indicated that they had not discussed their dialysis prognosis with healthcare providers. Additionally, a mere 14% engaged in conversations about life-threatening decisions. Ninety percent believed that healthcare providers had not furnished information about ACP, and only 30% had discussed such choices with their families. The findings revealed that the average standardized score for ACP and AD goals was 84.97, while the attitude towards PSDA received a standardized score of 69.94. The intention score stood at 69.52 in standardized terms. Potential candidates for ACP initiation included individuals aged 50 to 64, possessing at least a college education, being unmarried, and having no history of diabetes. CONCLUSION: Patients undergoing hemodialysis exhibited a significant knowledge gap concerning ACP, AD, and the PSDA. Notably, a substantial number of dialytic patients had not received adequate information on these subjects. Nevertheless, they displayed a positive attitude, and a considerable proportion expressed a willingness to sign AD. It is imperative for nephrologists to take an active role in initiating ACP discussions with patients from the very beginning.

Does Motivation in Physical Education Have an Impact on Out-of-School Physical Activity over Time? A Longitudinal Approach.

Previous research based on the trans-contextual model proposes that autonomous motivation in physical education (PE) is transferable to an out-of-school leisure-time (LT) context. However, only cross-sectional and unidirectional analyses have been conducted. The present study used a longitudinal design assessing N = 1681 students (M = 14.68 years) on two occasions, measuring the following constructs: perceived need for support in PE, motivational regulation during PE and LT, attitude, subjective norm, perceived behavioral control, intention, and physical activity behavior. Findings based on mixed effect models revealed that autonomy, competence, and relatedness support of the PE teacher were positively related to autonomous motivation. Moreover, similar motivational regulation types were found to significantly cross-lag across contexts. Through longitudinal mediation analyses, further support for the impact of autonomous motivation on physical activity, mediated by intention, attitude, and perceived behavioral control, was found. Suggestions for educational stakeholders regarding how to promote students' autonomous motivation are provided.

Adolescent Brain Development and Medical Decision-making.

With a few notable exceptions, adolescents do not possess the legal authority to provide consent for or refuse medical interventions. However, in some situations, the question arises regarding whether a mature minor should be permitted to make a life-altering medical decision that would be challenged if made by the minor's parent. In this article, I explore what we currently know about the adolescent brain and how that knowledge should frame our understanding of adolescent decision-making. The prevailing approach to determining when adolescents should have their decisions respected in the medical and legal context, an approach that is focused on establishing capacity under a traditional informed consent model, will be reviewed and critiqued. I will suggest that the traditional model is insufficient and explore the implications for the adolescent role in health care decision-making.

When Does A Minor's Legal Competence To Make Health Care Decisions Matter?

In this article, I examine the role of minors' competence for medical decision-making in modern American law. The doctrine of parental consent remains the default legal and bioethical framework for health care decisions on behalf of children, complemented by a complex array of exceptions. Some of those exceptions vest decisional authority in the minors themselves. Yet, in American law, judgments of minors' competence do not typically trigger shifts in decision-making authority from adults to minors. Rather, minors' decisional capacity becomes relevant only after legislatures or courts determine that the default of parental discretion does not achieve important policy goals or protect implicated constitutional rights in a particular health care context and that those goals can best be achieved or rights best protected by authorizing capable minors to choose for themselves. It is at that point that psychological and neuroscientific evidence plays an important role in informing the legal inquiry as to whether minors whose health is at issue are legally competent to decide.

Ethical Issues Raised by the Media Portrayal of Adolescent Transplant Refusals.

Cases of adolescents in organ failure who refuse solid organ transplant are not common, but several have been discussed in the media in the United States and the United Kingdom. Using the framework developed by Buchanan and Brock for surrogate decision-making, I examine what role the adolescent should morally play when deciding about therapy for life-threatening conditions. I argue that the greater the efficacy of treatment, the less voice the adolescent (and the parent) should have. I then consider how refusals of highly effective transplant cases are similar to and different from refusals of other lifesaving therapies (eg, chemotherapy for leukemia), which is more commonly discussed in the media and medical literature. I examine whether organ scarcity and the need for lifelong immunosuppression justify differences in whether the state intervenes when an adolescent and his or her parents refuse a transplant. I argue that the state, as parens patriae, has an obligation to provide the social supports needed for a successful transplant and follow-up treatment plan, although family refusals may be permissible when the transplant is experimental or of low efficacy because of comorbidities or other factors. I conclude by discussing the need to limit media coverage of pediatric treatment refusals.

Assessing Decision Making Capacity for Do Not Resuscitate Requests in Depressed Patients: How to Apply the "Communication" and "Appreciation" Criteria.

The Patient Self Determination Act (PSDA) of 1991 brought much needed attention to the importance of advance care planning and surrogate decision-making. The purpose of this law is to ensure that a patient's preferences for medical care are recognized and promoted, even if the patient loses decision-making capacity (DMC). In general, patients are presumed to have DMC. A patient's DMC may come under question when distortions in thinking and understanding due to illness, delirium, depression or other psychiatric symptoms are identified or suspected. Physicians and other healthcare professionals working in hospital settings where medical illness is frequently comorbid with depression, adjustment disorders, demoralization and suicidal ideation, can expect to encounter ethical tension when medically sick patients who are also depressed or suicidal request do not resuscitate orders.

Decisional Capacity in Amyotrophic Lateral Sclerosis.

The cognitive and behavioral changes that can be observed in the neurodegenerative terminal disease amyotrophic lateral sclerosis (ALS), once characterized as purely a motor neuron disease, have become increasingly recognized over the past century. Detecting cognitive deficits earlier and identifying continued changes at regular intervals can lead to improved care, proactive treatments, and earlier discussions about end-of-life wishes. Although medical decisional capacity is required for every treatment decision made, its importance becomes paramount when making decisions on complex medical treatments that will invariably and significantly affect quality of life or life itself. In this review, we conducted a critical analysis of the evidence-based literature on the cognitive and behavioral impairments in ALS that can compromise medical decisional capacity. We review specific ALS-related clinical scenarios in which decisional capacity is of utmost importance and discuss a practical framework for cognitive and behavioral assessment that can be routinely and efficiently used, while being mindful of the confounding factors associated with ALS. Finally, we review models for preserving patient choices that can be used in patients with ALS to help safeguard autonomy and retain dignity toward the end of life.

[Respect for self-determination and use of coercion in the treatment of mentally ill persons: an ethical position statement of the DGPPN]. / Achtung der Selbstbestimmung und Anwendung von Zwang bei der Behandlung psychisch erkrankter Menschen : Eine ethische Stellungnahme der DGPPN.

Respect for patient self-determination is a central ethical principle of medical care. Every person has the right to make decisions regarding his or her health autonomously, even if these decisions appear irrational to third parties. Free and informed consent is the necessary prerequisite for every diagnostic and therapeutic procedure. A patient's ability for self-determination is one requirement for valid consent. In illness, the ability for self-determination may be limited or absent in individual cases. An ethical dilemma arises if severely ill patients who are unable to make autonomous decisions put their health at significant risk and refuse medical procedures in this situation. While non-treatment can be severely detrimental to health, forced procedures can result in traumatization and can damage the relationship of trust between the doctor and patient. The dilemma is intensified in cases of danger to others. In these difficult situations doctors, therapists and nursing staff require ethical guidance for the professional conduct. The primary objective thereby is to avoid coercion. For this purpose recommendations for medical practice are formulated that can reduce the use of forced procedures (e.g. de-escalation procedures, communication competency, clinical ethics counseling, treatment agreements and patient living wills) or if they are unavoidable, that allow them to be conducted in an ethically and legally appropriate way. Further and continued education must pay greater attention to this ethical objective; therefore, for ethical reasons adequate personnel, spatial and structural are vital in hospitals.

Advance directives education: a critical need.

Despite increasing age, most older Americans do not have Advance Health Care Directives (AHCDs) while healthcare providers report limited knowledge for teaching about AHCDs. This article offers a history of AHCDs, explores one method for assessing AHCD knowledge using the Knowledge-Attitudinal-Experimental Survey on Advance Directives (KAESAD), and utilizes adult learning theory to develop an AHCD educational in-service for nurses. AHCD information and resources are provided.

Respecting Choices® and advance directives in a diverse community.

BACKGROUND: Respecting Choices® is a program designed and verified to improve advance care planning, yet it has not been tested in racially/ethnically diverse communities. Research has shown racial/ethnic minorities are less likely to have advance directives (ADs). OBJECTIVE: To determine whether Respecting Choices® would improve AD prevalence and utilization in a racially and ethnically diverse community. METHODS: The study design was that of a retrospective chart review. Subjects were all decedents from 2005 to 2010 (n=732) in a 300-bed Midwestern metropolitan hospital. Prevalence was assessed by the presence of an AD in the chart. Utilization was measured by the consistency of wishes expressed in an AD and treatment received ("No CPR," "No Feeding Tube," "No Antibiotics," "No Ventilator," "Comfort Care," and "Terminal Extubation"). Average treatment effect using regression analysis and matching on covariates was used for analysis of Respecting Choices® on AD prevalence. Proportional difference tests were used to compare consistency of wishes by race/ethnicity before and after Respecting Choices®. RESULTS: The prevalence of ADs increased significantly for racial and ethnic minorities after the implementation of Respecting Choices®: from 25.8% to 38.4% (p=0.011). The increase in AD prevalence for whites following Respecting Choices® was only marginal (46.7% to 47.3%; p=0.648), and the overall prevalence of ADs did not significantly change (35.9% to 42.9%; p=0.069). Consistency was high (74% to 96%) for all orders, and there were no significant differences following implementation of Respecting Choices® or between whites and racial and ethnic minorities. CONCLUSIONS: The prevalence of ADs increased after Respecting Choices® was initiated in a racially and ethnically diverse community.

Legal briefing: the new Patient Self-Determination Act.

This issue's "legal briefing" column covers recent legal developments involving the Patient Self-Determination Act (PSDA). Enacted in the wake of the U.S. Supreme Court's Cruzan decision in 1990, the PSDA remains a seminal event in the development of U.S. bioethics public policy, but the PSDA has long been criticized as inadequate and ineffective. Finally, recent legislative and regulatory changes promise to revitalize and rejuvenate it. The PSDA has been the subject of recent articles in The Journal of clinical ethics.' I categorize new legal developments concerning the PSDA into the following eight sections: (1) Background and history (2) Rules and requirements (3) Criticism and challenges (4) Failed efforts to amend the PSDA (5) Personalize your Care Act of 2013 (6) New regulations (7) New regulatory guidance (8) Expanded enforcement.

Reasons for noncompletion of advance directives in a cardiac intensive care unit.

BACKGROUND: The Patient Self-Determination Act of 1990 mandates that hospitals reimbursed by Medicare and Medicaid inform each patient about the patient's right to a natural death. OBJECTIVE: To describe and explore implementation of the Patient Self-Determination Act in a critical care setting. The goal was to assess patients' understanding of advance directives. METHODS: In a semistructured cross-sectional study, all eligible patients 18 years or older admitted to the cardiac intensive care unit at Duke University Medical Center, Durham, North Carolina, were assessed. Each patient was asked the standard question required by the Patient Self-Determination Act-Do you have an advance directive?-and 3 open-ended questions to ascertain the patient's understanding of advance directives. RESULTS: The sample consisted of 505 patients with a mean age of 61.9 years (SD, 14.8), 37.8% (n = 191) were women, and 68.5% (n = 346) were white. Most patients (64.4%; n = 325) did not have an advance directive before admission to the unit. Of the patients who initially declined the opportunity to complete an advance directive (n = 213), 33.8% (n = 72) said they did not understand the question when initially asked and therefore just said no. CONCLUSIONS: Current practice meets the requirement of the Patient Self-Determination Act for documentation of patients' right to a natural death. However, simply asking Do you have an advance directive? does not elicit an accurate reflection of a patient's understanding of advance directives.

Advance care planning and surrogate health care decision making for older adults.

Older adults have a legally recognized right to determine and control the health care they receive and are legally presumed to possess the capacity necessary to make health care decisions. However, older adults are at major risk for life-threatening and serious health problems leading to a loss of their capacity to make end-of-life and other health care decisions. Advance care planning is a process that enables older adults to specify who they want to act as a surrogate decision maker and what decisions they want made for them in the event of incapacitation. Geriatric nurses can play a significant role in promoting advance care planning and the use of legal tools for such planning.