Patient Self-Determination Research Articles

COMPARING ADVANCE DIRECTIVES LAWS IN TAIWAN AND THE UNITED STATES: IMPACT ON END-OF-LIFE CARE

Abstract The current study addresses increasing multicultural concerns regarding autonomy in end-of-life care decisions by comparing Advance Directives (AD) laws in the US, under the 1991 Patient Self-Determination Act (PSDA), and Taiwan, with its 2019 Patient Right to Autonomy Act (PRAA). By highlighting key legal differences and similarities, we aim to provide insights for enhancing in end-of-life care policies and understanding the impact of legal frameworks on patient autonomy internationally. To address our research objectives, we conducted a systematic literature review by searching the PubMed, ProQuest, and Hospice Foundation of Taiwan databases for the following keywords: (1) English and Chinese, (2) Published >=1991, (3) United States or Taiwan (4) Patient Self-Determination Act, Patient Right to Autonomy Act, and advance directives. The results showed that both the US and Taiwan view ADs as essential for healthcare autonomy, allowing healthcare agents to represent incapacitated individuals. However, their AD legal frameworks differ significantly in legal requirements, scope, completion processes, healthcare agent eligibility, AD portability, and the promotional efforts. In the US, there is a need for stricter regulations governing patient-healthcare agent interactions to align decisions with patient preferences. Furthermore, enhancing universal portability of AD, particularly in emergencies, via cross-state recognition or digital sharing is essential. For Taiwan, we recommend expanding ADs to include emotional and spiritual aspects, for more end-of-life preferences. Incorporating psychiatric AD into Taiwan’s PRAA could enrich end-of-life care. Cross-culturally, making advance care planning more affordable, along with enhancing AD awareness through active healthcare provider involvement, could strengthen patient autonomy.

An ethics analysis of antipsychotic dose reduction and discontinuation: Principles for supporting recovery from psychosis.

To examine the evidence and practice of antipsychotic dose reduction from the lens of biomedical ethics (specifically principlism) to support evidence-based practice and patient choice and self-determination. An overview of the evidence from randomized controlled trials of antipsychotic dose reduction versus maintenance is presented. This is followed by a theoretical examination of the four key biomedical ethical principles of autonomy, nonmaleficence, beneficence, and justice and how they apply in the case of antipsychotic dose reduction. Existing clinical trial research is dominated by relapse as the primary outcome, with dose reduction associated with a higher risk of relapse than maintenance. Few studies have measured other patient-centered outcomes but have shown preliminary evidence for superior cognitive functioning, lower negative symptoms, and better functioning following dose reduction. Respect for autonomy is a cornerstone of psychiatric rehabilitation, and this includes the right of people to choose to reduce or discontinue antipsychotic medication. Reduced capacity for treatment decision making can be supported. Autonomy and appraisal of nonmaleficence and beneficence associated with dose reduction can be facilitated through shared or supported decision making. Clinicians should continue to strive for justice through the fair allocation of resources to support all people who request antipsychotic dose reduction. Clinicians have a responsibility to balance the four core ethical principles to the best of their ability when supporting a person in their recovery journey. Exploring, trialing, and supporting antipsychotic dose reduction may be part of this process if that is the patient's choice. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

COVID-19's Impact in Long-Term Care Facilities: The Health and Coping Strategies of Older Adults and Their Families.

Describe the stressors that long-term care facility (LTCF) residents and their family members were exposed to during the COVID-19 pandemic, the resources they mobilised to cope with them, and the strategies used by professionals to support them. A descriptive qualitative design study. Between March 2021 and February 2022, we carried out semi-structured interviews with 8 LTCF residents, 11 family members, and 6 focus groups made up of healthcare and support staff from 8 LTCFs. Three themes emerged: (1) residents and family members: separated and suffering, (2) residents and family members: reinventing themselves, and (3) staff: attempts to maintain residents' well-being. LTCF Residents' and their family members' exposure to the various stressors linked to the COVID-19 pandemic generated suffering. Healthcare and support staff implemented strategies to support them, notably to maintain links between them. Some deep reflection must occur on the concepts of LTCF residents' autonomy and self-determination when implementing protective measures in future pandemic situations. This study has provided new insights into the nature of the stressors faced by LTCF residents and their families, and the measures implemented by professionals to support them. The role of the families of LTCF residents needs to be better recognised. Our results indicate the importance of involving nurses in discussions on patient autonomy and self-determination when implementing protective measures (in a pandemic situation). Exploring the nature of the stressors experienced by LTCF residents and their families enables professionals to tailor strategies to support them. Maintaining residents' self-determination is essential when implementing protective measures. Families involved with residents must be recognised and included in the assessment of stressors and the personalisation and implementation of strategies to support LTCF residents. No Patient or Public Contribution.

Analyzing the roles, workflows, and communication dynamics of social workers within interprofessional care teams

ABSTRACT Social workers frequent interprofessional healthcare teams, but few studies examine the day-to-day experiences of these providers on interprofessional teams. Our study utilized semi-structured interviews with 54 medical social workers practicing on interprofessional healthcare teams. A thematic analysis was used to analyze the day-to-day functions of these social workers. The analysis resulted in three primary themes: 1) Social Workers’ Self-Perceptions of their Roles within Interprofessional Teams, 2) Social Workers Shifting Roles on Interprofessional Teams, and 3) Interprofessional Team Dynamics that Impact the Role of a Social Worker. Social workers perceived their primary roles as contributing a unique systems approach to interprofessional healthcare teams while emphasizing patient self-determination. These self-perceptions influenced their shifting roles on interprofessional healthcare teams (e.g. clinician, case manager, bridge builder). In addition to individual self-perceptions, the healthcare system infrastructure influenced social work roles. For example, social workers in outpatient settings more frequently assumed the role of a mental health practitioner compared to those in inpatient settings. Last, there was variation in interprofessional communication and workflow assignment based on the healthcare infrastructure. Future research should examine the education and training efforts of social workers and other allied health professions for interprofessional healthcare teams.

Improving advance care planning outcomes through social work and provider collaboration.

55 Background: For many patients living with a life-limiting illness, the ability to have authority in their end-of-life (EOL) decision making is a foundational aspect in achieving a peaceful passing. Literature shows, however, that a low percentage of adults in the United States have completed advance directive documents or had discussions indicating their wishes for EOL care. With their unique communication and advocacy skills, licensed masters-prepared social workers (MSWs) are primed to play an active and effective role in Advance Care Planning (ACP) discussions with patients. The purpose of this study aimed to explore the extent to which MSWs in an oncology setting are harnessing these skills. Methods: An online survey was dispersed to social workers working in outpatient oncology clinics in The US Oncology Network. The survey reviewed the level of education, licensure status, involvement and comfort with ACP discussions, and factors that would aid increased engagement of these conversations. Results: 41 out of 75 social workers completed the survey. 95% of respondents were masters prepared (MSW) and licensed at the masters (27%) or clinical (73%) level. Of these MSWs, 95% are having ACP conversations with their patients and loved ones, and 87% are initiating these discussions independently. Although 64% report that they are getting referrals from physicians in their practice, almost half (49%) indicated they would like more support from physicians around ACP conversations with patients. Per respondent comments, a need was expressed for providers to help initiate and normalize ACP discussions. It was also indicated that MSWs do not believe providers fully understand MSWs ability to engage in these discussions. Interestingly, only 10% of MSWs are billing for ACP discussions, yet 46% indicated they would be interested in doing so. Conclusions: Our results indicate there is a gap between the work MSWs are doing in the ACP space and how providers are utilizing the MSW’s clinical expertise in this area. The use of MSWs in a cancer care setting can enhance patient self-determination and documentation of wishes for EOL, as well as support multidisciplinary care of the patient. Additional benefits could include improvement of ACP quality measures, increased revenue, and provider satisfaction in knowing these sensitive conversations are being addressed by a trusted member of the healthcare team.

Better Conversations for Better Informed Consent: Talking with Surgical Patients.

For more than sixty years, surgeons have used bioethical strategies to promote patient self-determination, many of these now collectively described as "informed consent." Yet the core framework-understanding, risks, benefits, and alternatives-fails to support patients in deliberation about treatment. We find that surgeons translate this framework into an overly complicated technical explanation of disease and treatment and an overly simplified narrative that surgery will "fix" the problem. They omit critical information about the goals and downsides of surgery and present untenable options as a matter of patient choice. We propose a novel framework called "better conversations." Herein, surgeons provide context about clinical norms, establish the goals of surgery, and comprehensively delineate the downsides of surgery to generate a deliberative space for patients to consider whether surgery is right for them. This paradigm shift meets the standards for informed consent, supports deliberation, and allows patients to anticipate and prepare for the experience of treatment.

Existential Advocacy in Nursing Care: A Concept Analysis

As modern nursing advances at an astounding rate, existential advocacy (EA) is vital for delivering patient care in line with wellness goals and personal values. This concept analysis aims to define EA within the context of nursing and align the concept with Jean Watson’s Unitary Caring Science (UCS) and her 10 Caritas Processes. A comprehensive literature search identified 12 relevant publications from the following databases: PubMed, PsycINFO, Google Scholar, and CINAHL. Subsequently, utilizing Walker and Avant’s method for concept analysis, a standardized structure to identify EA’s defining attributes, antecedents, consequences, and empirical referents emerged. Antecedents for EA are patient vulnerability, nurse-patient rapport, nurse autonomy to act as an advocate, and patient request for advocacy. Defining attributes of EA include the following: supporting patient self-determination, caring-trusting nurse-patient relationship, promoting individualized meaning of health and wellness, and encouraging values-based problem-solving. The optimal consequence of EA is patients’ awareness of their current health status, leading to individualized care and decision-making based on a patient’s values. EA is a nurse’s effort to support and promote their patients’ right to self-determination by helping them discern their holistic health and wellness situation and then clarify their values within that reality. Watson’s UCS and 10 Caritas Processes align with EA to facilitate nurse-patient transpersonal caring occasions. EA explicates the care and advocacy nurses provide into a defined concept while highlighting nurses’ essential role in patients’ physical, emotional, and spiritual well-being. With EA better defined, the concept can be assessed, measured, and implemented within the discipline of nursing.

Self-determination in older patients: Experiences from nurse-dominated ambulance services.

To describe ambulance clinicians' experiences of self-determination in older patients. The study had an inductive and explorative design, guided from a life-world perspective. Thirty-two Swedish ambulance clinicians were interviewed in six focus groups in November 2019. The data were analysed with content analysis, developing manifest categories and latent themes. The ambulance clinicians assessed the older patients' exercise of self-determination by engaging in conversation and by being visually alert, to eventually gain an overall picture of their decision-making capacity. This assessment was used as a platform when informing older patients of their rights, thus promoting their participation in care. Having limited time and narrow guidelines counteracted ambulance clinicians' ambitions to support older patients' general desire to avoid hospitalization, which resulted in an urge to displace their responsibility to external decision-makers. Expectations that older patients with impaired decision-making ability will give homogeneous responses mean an increased risk of ageist attitudes with a simplified view of patient autonomy. Such attitudes risk the withholding of information about options that healthcare professionals do not wish older patients to choose. When decision-making is difficult, requests for expanded guidelines may paradoxically risk alienation from the professional nursing role. The findings show ambulance clinicians' unwillingness to shoulder their professional responsibility when encountering older patients with impaired decision-making ability. In assuming that all older patients reason in the same way, ambulance clinicians tend to adopt a simplistic and somewhat ageist approach when it comes to patient autonomy. This points to deficiencies in ethical competence, which is why increased ethics support is deemed suitable to promote and develop ethical competence. Such support can increase the ability to act as autonomous professionals in accordance with professional ethical codes. This study adhered to COREQ guidelines. None.

Effectiveness of nursing intervention in short-term hospitalization for patients suffered from borderline personality disorder and self-harm. A narrative literature review

Introduction: Personality disorder sufferers with severe self-harm and experience long psychiatric hospitalizations have complex mental health conditions and are at risk of suicide. When the symptoms of emotional instability are combined with self-harm, the resulting crisis often becomes difficult for patients and caregivers to manage. To improve care during these crises, the Dutch Multidisciplinary Guideline for Personality Disorders designates “brief admission” (BA) hospitalizations as an ameliorative intervention. Objective: To describe the effectiveness of short hospitalization nursing care for people with borderline personality disorder and who practice self-harm, compared to ordinary hospitalization. Methods: A narrative review was conducted through the Embase and CINAHL databases, the selected articles had to answer the following research questions: “what are the observable benefits of short-term hospitalization on patients with borderline personality disorder?”; and “what are the benefits compared to short hospitalization operators?”. Results: Seven studies were selected. The results show that BA was perceived as an effective nursing intervention, which promoted the patient’s self-determination and self-care. This helped increase confidence in daily life and allowed people to maintain their daily routines, work, and relationships by decreasing long hospitalizations and increasing patient compliance. There has also been benefit from the staff, who report an improvement in work quality. Conclusions: This type of hospitalization has developed in Northern European states. BA has never been tested in the Italian healthcare sector. It would be appropriate and desirable, given the results obtained, to experiment with this procedure also in Italy to obtain specific feedback regarding the relationship of short-term hospitalization with our National Health Service. It is hoped that this research can be a stimulus in this sense.

「연명의료결정법」의 미성년 환자에 대한 연명의료중단등결정에 관한 검토

In this article, the decision to discontinue life-sustaining treatment for minors under the Life-Sustaining Treatment Decision Act was reviewed. A minor patient's wish to discontinue life-sustaining treatment is expressed only through a life-sustaining treatment plan. If there is no life-sustaining treatment plan, the legal representative with parental authority decides to discontinue life-sustaining treatment for the patient.
 Therefore, it was examined whether the right to self-determination of minor patients is restricted or reduced under the Life-Sustaining Treatment Decision Act compared to adult patients who can confirm their wishes through advance directives for life-sustaining treatment or family statements.
 As a result, it was confirmed that they were not treated differently in the Life Sustaining Treatment Decision Act. This is because the only subjects of the Life Sustaining Treatment Decision Act are patients who are in the process of dying. Medically meaningless interruption of medical care for a patient in the process of dying has nothing to do with the right to self-determination.
 Rather, procedures for discontinuing life-sustaining treatment for minor patients without a legal representative who has parental authority should be discussed in the Life-Sustaining Treatment Act. In order to proceed quickly, it is better to have the decision made by a medical ethics committee rather than expanding the range of families that can make the decision.

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

BackgroundHemodialysis 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.MethodsWe 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.ResultsInitially, 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.ConclusionPatients 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.

Ambulance clinicians' understanding of older patients' self-determination: A vignette study.

Older patients are often vulnerable and highly dependent on healthcare professionals' assessment in the event of acute illness. In the context of ambulance services, this poses challenges as the assessment is normally conducted with a focus on identifying life-threatening conditions. Such assessment is not fully satisfactory in a patient relationship that also aims to promote and protect patient autonomy. To describe ambulance clinicians' understanding of older patients' self-determination when the patient's decision-making ability is impaired. A qualitative design with an inductive approach, guided by descriptive phenomenology. In total, 30 ambulance clinicians, comprised of 25 prehospital emergency nurses, 1 nurse and 4 emergency medical technicians participated in 15 dyadic interviews. The research was conducted in accordance with the Declaration of Helsinki, and permission was granted by the Swedish Ethical Review Authority. The findings are presented in two themes: (1) Movement between explicit and implicit will; and (2) Contradictions about the patient's best interests. The clinicians' interpretations are based on an understanding of the patient's situation using substitute decision-making in emergency situations and conversations that reveal the patient's explicit wishes. Sometimes the clinicians collaborate to validate the patient's implicit will, while they at other times subordinate themselves to others' opinions. The clinicians find themselves in conflict between personal values and organisational values as they try to protect the patient's self-determination. The results indicate that older patients with an impaired decision-making ability risk losing the right to self-determination in the context of ambulance services. The clinicians face challenges that significantly affect their ability to handle the older patient's unique needs based on a holistic perspective and their ability to be autonomous.

Protecting the Autonomy of Patients with Severe Mental Illness Through Psychiatric Advance Directive Peer-Facilitation

Protecting the Autonomy of Patients with Severe Mental Illness Through Psychiatric Advance Directive Peer-Facilitation

American Muslim Engagement With Advance Care Planning: Insights From a Community Survey.

Background and Objectives: Advance Care Planning (ACP) is a critical tool in advancing patient self-determination in health care delivery. Despite increasing research into racial/ethnic minorities' engagement with ACP in the US, studies on Muslim Americans are relatively scarce. We aimed to examine levels of ACP engagement among Muslim adults and measure associations between socio-demographic and religiosity characteristics and ACP engagement. Methodology: This was a survey study among Muslims attending mosque seminars in Chicago and Washington DC. Religiosity characteristics were assessed using a modified version of the Duke University Religion Index (DUREL) and the Psychological Measure of Islamic Religiousness (PMIR). ACP engagement was measured by the 4-item ACP Engagement Survey (4-ACPES) and 2 additional items covering ACP religious dimensions. Statistical analyses were performed using SPSS 28.0. Results: Out of 152 respondents, 56.2% to 72.6% were in the pre-contemplation stage of ACP across the 6 ACP items. Bivariate analyses showed that ACP engagement was correlated with participant age, ethnicity, duration of stay in the US and country of birth. Multivariable analyses demonstrated no association between religiosity characteristics and ACP engagement; independent predictors of ACP engagement were race/ethnicity (being South Asian), country of birth (born outside the US) and duration of stay in the US (longer years). Discussion/Conclusion: Our study suggests that American Muslims are largely unprepared to engage with ACP. Moreover, religiosity does not predict ACP engagement. We call for greater community outreach and educational programs that instill awareness and knowledge on the importance of ACP, and provide resources for tailored religiously-oriented conversations that assist individuals with ACP.

Rebuilding a Reproductive Future Informed by Disability and Reproductive Justice.

Rebuilding a Reproductive Future Informed by Disability and Reproductive Justice.

Widespread Misinterpretation of Advance Directives and Portable Orders for Life-Sustaining Treatments Threatens Patient Safety and Causes Undertreatment and Overtreatment.

Widespread Misinterpretation of Advance Directives and Portable Orders for Life-Sustaining Treatments Threatens Patient Safety and Causes Undertreatment and Overtreatment.

Participation and Influencing Factors in the Decision-Making of Life-Sustaining Treatment: A Focus on Deceased Patients with Hematologic Neoplasms.

This study aimed to investigate the involvement of patients who died from hematologic neoplasms in the decision-making process surrounding the withdrawal of life-sustaining treatment (LST). A total of 255 patients diagnosed with hematologic neoplasms who ultimately died following decisions related to LST during their end-of-life period at a university hospital were included in the study. Data were retrospectively obtained from electronic medical records and analyzed utilizing the chi-square test, independent t-test, and logistic regression. In total, 42.0% of patients participated in the decision-making process regarding LST for their hematologic neoplasms, while 58.0% of decisions were made with family involvement. Among these patients, 65.1% died in general wards and 34.9% in intensive care units (ICUs) as a result of decisions such as the suspension of LST. The period from the LST decision to death was longer when the decision was made by the patient (average, 27.15 days) than when it was made by the family (average, 7.48 days). Most decisions were made by doctors and family members in the ICU, where only 20.6% of patients exercised their right to make decisions regarding LST, a rate considerably lower than 79.4% observed in general wards. Decisions to withhold or withdraw LST were more commonly made by patients themselves than by their families. The key to discussing the decision to suspend hospice care and LST is respecting the patient's self-determination. If a patient is lucid prior to admission to the ICU, considerations about suspending LST should involve the patient input.

The challenge of risk prevention in home healthcare-An interview study with nurses in municipal care.

Safety in home healthcare has garnered increased attention as more people are receiving care for complex conditions at home. The prerequisites for providing safe care at home differ from those in hospitals. Malnutrition, falls, pressure ulcers and inappropriate medication commonly follow poor risk assessments, causing unnecessary suffering and costs. Therefore, risk prevention in home healthcare needs to be prioritised and studied more closely. To describe nurses' experiences of performing risk prevention in municipal home healthcare. Qualitative inductive approach, using semi-structured interviews with 10 registered nurses in a municipality in southern Sweden. Data underwent qualitative content analysis. The analysis resulted in three main categories and one overarching theme describing nurses' experiences of risk prevention in home healthcare. Getting everyone onboard comprises the categories: Managing safety while respecting the patient's self-determination, which covers patient participation, the strategic importance of respecting different views of risks and information and the fact that healthcare workers are guestsin the patient's home. Finding ways to make it work touches upon the relational aspect, including next-of-kin and promoting a common understanding to prevent risks. Being squeezed between resources and requirements refers to ethical dilemmas, teamwork, leadership and organisational prerequisites. Patient habits, living conditions and limited awareness of risks is a challenge in risk prevention in home healthcare, where patient participation plays a pivotal role. Risk prevention in home healthcare needs to be initiated at an early stage of disease and ageing and should be seen as a process where early health-promoting interventions can prevent the development and accumulation of risks over time. Long-term cross-organisational collaborations and patients' physical, mental and psychosocial conditions also need to be taken into account.

Integrating person-centred care and social justice: a model for practice with larger-bodied patients

Person-centred care (PCC) has been touted as a promising paradigm for improving patients’ experiences and outcomes, and the overall therapeutic environment for a range of health conditions, including obesity. While...

From Constitutional Protections to Medical Ethics: The Future of Pregnant Patients' Medical Self-Determination Rights After Dobbs.

This article argues that the Supreme Court's decision in Dobbs is likely to impact medical decision-making by pregnant patients in a variety of contexts. Of particular concern are situations where a patient declines treatment recommended for its potential benefit to the fetus and situations where treatment is withheld due to potential risk to the fetus. The Court's elevation of fetal interests, combined with a history of courts using abortion jurisprudence to guide their reasoning in compelled treatment cases, means that Dobbs has the potential to limit patient autonomy in a wide array of clinical settings. The article calls on professional medical associations to issue ethical guidance affirming the duty to respect the medical self-determination of pregnant patients.