Preserve Patient Autonomy Research Articles

Psychiatrists’ experiences of involuntary care in South Africa: dilemmas for practice in challenging contexts

Providing for people with psychosocial conditions in crisis is a complex and controversial endeavour that has gained significant attention over the past decade. This increased focus is driven by global...

Current issues surrounding Parkinson's disease

The number of people suffering from Parkinson's disease is constantly increasing. Diagnosis is based on the motor and non-motor symptoms present throughout the course of the disease. To preserve patient autonomy, the main therapeutic challenge is to propose a treatment adapted to each profile, in conjunction with the implementation of non-medication strategies, reflection on improved accessibility to existing medication and research into innovative therapies.

Impact of a Clinical Decision Support Alert on Informed Consent Documentation in the Neonatal Intensive Care Unit.

Informed consent is necessary to preserve patient autonomy and shared decision-making, yet compliant consent documentation is suboptimal in the intensive care unit (ICU). We aimed to increase compliance with bundled consent documentation, which provides consent for a predefined set of common procedures in the neonatal ICU from 0% to 50% over 1 year. We used the Plan-Do-Study-Act model for quality improvement. Interventions included education and performance awareness, delineation of the preferred consenting process, consent form revision, overlay tool creation, and clinical decision support (CDS) alert use within the electronic health record. Monthly audits categorized consent forms as missing, present but noncompliant, or compliant. We analyzed consent compliance on a run chart using standard run chart interpretation rules and obtained feedback on the CDS as a countermeasure. We conducted 564 audits over 37 months. Overall, median consent compliance increased from 0% to 86.6%. Upon initiating the CDS alert, we observed the highest monthly compliance of 93.3%, followed by a decrease to 33.3% with an inadvertent discontinuation of the CDS. Compliance subsequently increased to 73.3% after the restoration of the alert. We created a consultant opt-out selection to address negative feedback associated with CDS. There were no missing consent forms within the last 7 months of monitoring. A multi-faceted approach led to sustained improvement in bundled consent documentation compliance in our neonatal intensive care unit, with the direct contribution of the CDS observed. A CDS intervention directed at the informed consenting process may similarly benefit other ICUs.

Psychotherapy, artificial intelligence and adolescents: ethical aspects.

Artificial intelligence (AI) has rapidly advanced in various domains, including its application in psychotherapy. AI-powered psychotherapy tools present promising solutions for increasing accessibility to mental health care. However, the integration of AI in psychotherapy raises significant ethical concerns that require thorough consideration and regulation to ensure ethical practice, patient safety, and data privacy. This article discusses the ethical considerations surrounding the utilization of AI in psychotherapy, emphasizing the need for responsible implementation, patient privacy, and the human-AI interaction. The challenge raised by the use of artificial intelligence requires a comprehensive approach. Schools, in particular, are crucial in providing both knowledge and ethical guidance, helping young individuals decipher the complexities of online content. Additionally, parental support is essential, requiring the provision of time, fostering relationships, encouraging dialogue, and creating a safe environment to share experiences amidst the intricacies of adolescence. Reimagining social and healthcare services tailored for adolescents is equally crucial, taking into account recent societal changes. The integration of AI in psychotherapy has vast potential to transform mental healthcare. However, ensuring its accuracy and effectiveness demands a proactive approach to address associated ethical considerations. By adopting responsible practices, preserving patient autonomy, and continually refining AI systems, the field can leverage the benefits of AI in psychotherapy while maintaining high ethical standards.

Understanding patients' perspectives when unprepared for the emergence of a parastomal bulge-a qualitative study.

The aim was to investigate patients' experiences of being prepared for the development of a parastomal bulge in relation to a stoma. The paper draws on a qualitative interview study conducted with 20 Danish patients participating in five focus groups. Analysis was performed using a phenomenological-hermeneutic approach. We identified three themes. The first theme is 'The unforeseen bulge gives rise to increasing concern and a search for an explanation'. Patients searched for explanations in their own life and suspected that their behaviour or previous illness induced the bulge. The second theme is 'Missing or confusing information leads to counterproductive behaviour'. Patients lacked information on the prevention and treatment of parastomal bulging which led to disappointment with healthcare professionals. The third theme is 'Weighing the pros and cons of life with the bulge against the gamble of surgical repair'. Some patients came to terms with their situation, but for others a deadlocked situation arose when surgical repair was not an option. Healthcare communication directly impacts on patients' experiences and outcomes. When unprepared for the emergence of a parastomal bulge, patients' emotional and psychological well-being are affected and likewise patients' possibility of using their own health beliefs as a preventive strategy. To preserve patient autonomy, satisfaction and well-being, surgeons and stoma nurses should provide patients with tailored information bearing in mind the current lack of clear evidence on the prevention and treatment of parastomal bulging.

Ethical Implications Of Artificial Intelligence In Healthcare Decision-Making A Crossroads Of Social Values, Computer Algorithms, And Medical Practice

The progression of Artificial Intelligence (AI) is poised to revolutionize healthcare, augmenting human expertise with computational capabilities to transform clinical decision-making. This study delves into the intricate dynamics among societal values, computational algorithms, and medical practice, shedding light on the juncture where AI functions as a collaborative tool, elevating diagnostic precision and treatment selection while upholding the human dimension in patient care. The evolution of AI technology highlights its capacity to process extensive medical data, unveiling nuances imperceptible to human observation. Nevertheless, the assimilation of AI within clinical contexts prompts ethical considerations concerning the continuity of patient-centric care. The essence of patient-provider relationships—characterized by empathy and emotional resonance—intersects with AI's computational efficacy. This inquiry navigates this intersection by exploring models of collaboration that harmonize AI with human judgment, enriching clinical accuracy while honoring the complexities of human experience. In response to the dynamic healthcare landscape, various dimensions come into focus, spanning the augmentation of diagnostic precision to the intricate intricacies of treatment selection. These facets underscore the symbiotic rapport between AI algorithms and human expertise. Nonetheless, challenges emerge in the integration process—ensuring AI's transparency, preserving patient autonomy, and addressing potential erosion of trust. This work underscores the essential equilibrium between AI's capabilities and the essence of compassionate human care. By traversing diagnostic accuracy, treatment selection, and the preservation of human attributes, this study embarks on a holistic exploration. It navigates the metamorphosis of medical practice, steered by AI-augmented healthcare. This investigation illuminates the trajectory toward an ethically grounded, patient-centric integration of AI, heralding a transformative era in healthcare while honoring the timeless principles of empathetic care.

Developing a Novel Advance Planning Tool for Dementia Patient Participation in Scientific Research.

AbstractResearch represents an avenue through which patients can contribute to the knowledge base surrounding their condition. However, persons with dementia cannot legally consent to participation in most scientific research. One possible avenue to preserve patient autonomy in the sphere of research is through an advance planning document. Scholars of medicine, ethics, and law have largely approached this topic from a theoretical angle, compelling the authors to develop and implement a tangible research-specific advance planning tool. In order to inform the creation of this novel legal instrument, the present study leveraged semistructured telephone interviews with cognitively intact older adults in the Upper Connecticut River Valley region of New Hampshire. Participants were prompted to reflect on their attitudes toward participation in scientific research, should they develop dementia. They were also asked to consider the possibility of incorporating research into their advance planning regime, their preferred format for a research-specific advance planning tool, and the potential relationship between an advance planning tool and their surrogate decision maker in the context of research participation. Qualitative analysis was employed to extract themes from interview responses, revealing a pervasive desire for an advance planning tool that embraces specificity, flexibility, practicality, and the integral role of the surrogate decision maker. Ultimately, through collaboration with physicians and an elder law attorney in the region, these findings were translated into a research-specific advance planning component within the Dartmouth Dementia Directive.

Identifying barriers to advance care plan completion among older adults

Advance care planning (ACP) is an important tool for preserving patient autonomy and benefits patients, families, and providers. ACP is underutilized throughout the United States, yet the factors contributing to this deficit are poorly understood. The purpose of this study was to develop an understanding of older individuals’ attitudes towards advance care planning and to characterize perceived barriers to ACP completion. A sample of 240 United States residents age 65-years and older were invited to complete a survey assessing their attitudes toward ACP through an online panel. Participants were administered a structured questionnaire comprised of scaled items that were derived from prior qualitative discussions about ACP with groups of seniors. An analysis of Likert scale responses was performed to identify common barriers underlying participants’ reluctance to complete advance care plans. One hundred and thirty (54%) respondents reported having completed an advance care plan, while 110 (46%) had not. Those who completed ACPs feel it is important to avoid burdening their families with difficult decisions and healthcare expenses by stating their preferences, a finding that is consistent with prior research. Among those without advance care plans, 53 (48%) reported they had heard of advance care planning before participating in the study. The most prevalent barriers were uncertainty about healthcare preferences and uncertainty about how to initiate advance care planning. External barriers such as inconvenience, time, and cost did not emerge as important barriers. Free-text responses provided additional context to respondents’ answers. The relatively low rates of advance care plan completion and awareness among older Americans illustrate a pressing need to expand ACP education. Additionally, participants’ responses indicate that a set of internal barriers inhibit older individuals from completing advance care plans. Understanding these barriers can guide patient-centered discussions of advance care planning across multiple clinical settings and inform community efforts to improve ACP access. In particular, helping patients formulate and articulate their healthcare preferences may help increase ACP uptake.

Meaning from tragedy: exploring attitudes toward dementia patient participation in research

AbstractBackgroundSeveral prominent bioethics committees currently restrict dementia patient participation in research to projects that are low risk or offer potential benefit to the participant (Bernat). While these barriers were crafted to protect persons living with dementia, they may prevent them from contributing to non‐therapeutic research, a meaningful and rewarding effort that might not improve their own illness but could help future patients. One avenue toward preserving patient autonomy would be a dementia‐specific advance directive which would outline wishes for research participation in the event of cognitive impairment. However, there remains the question of whether it should include options for specific procedures (e.g., MRI, blood tests, lumbar puncture) or merely list broad categories of study risk (e.g., low, moderate, high) to which patients could consent. Before implementing novel legal measures, it is critical to examine attitudes of older individuals toward advance planning for research participation.MethodsThe current project will rely on semi‐structured telephone interviews with cognitively intact seniors to investigate attitudes toward dementia patient participation in research. Broadly, subjects will be prompted to reflect upon (i) their willingness to participate in therapeutic and/or non‐therapeutic research should they develop dementia, (ii) the role of an advance directive and surrogate‐decision maker in the context of research participation, and (iii) the preferred format for a research addendum to a dementia‐specific supplement. Notes will be taken during interviews and analyzed quantitatively and qualitatively for salient themes.ResultsThis study has been approved by the Dartmouth Committee for the Protection of Human Subjects. Interviews will begin in the Fall of 2021.ConclusionScientific research is the strongest weapon in the ongoing fight against dementia. Cognitively impaired individuals could be vital members of this effort. By exploring attitudes of older individuals toward advance planning for research participation, this project frames lived experiences within neuroethics and law. Such real‐world opinions will ultimately inform the creation of policy and legal measures to best serve this unique population. Reference: James L. Bernat: Ethical Issues in Neurology, 3rd Philadelphia: Lippincott Williams & Wilkins, 2008, pp. 374‐376.

Informed consent in pragmatic trials: results from a survey of trials published 2014–2019

ObjectivesTo describe reporting of informed consent in pragmatic trials, justifications for waivers of consent and reporting of alternative approaches to standard written consent. To identify factors associated with (1) not...

End-of-Life Decision-Making in Intensive Care Ten Years after a Law on Advance Directives in Germany.

Background and Objectives: Mortality on Intensive Care Units (ICUs) is high and death frequently occurs after decisions to limit life-sustaining therapies. An advance directive is a tool meant to preserve patient autonomy by guiding anticipated future treatment decisions once decision-making capacity is lost. Since September 2009, advance directives are legally binding for the caregiver team and the patients’ surrogate decision-maker in Germany. The change in frequencies of end-of-life decisions (EOLDs) and completed advance directives among deceased ICU patients ten years after the enactment of a law on advance directives in Germany is unknown. Materials and Methods: Retrospective analysis on all deceased patients of surgical ICUs of a German university medical center from 08/2008 to 09/2009 and from 01/2019 to 09/2019. Frequency of EOLDs and advance directives and the process of EOLDs were compared between patients admitted before and after the change in legislation. (No. of ethical approval EA2/308/20) Results: Significantly more EOLDs occurred in the 2019 cohort compared to the 2009 cohort (85.8% vs. 70.7% of deceased patients, p = 0.006). The number of patients possessing an advance directive to express a living or therapeutic will was higher in the 2019 cohort compared to the 2009 cohort (26.4% vs. 8.9%; difference: 17.5%, p < 0.001). Participation of the patients’ family in the EOLD process (74.7% vs. 60.9%; difference: 13.8%, p = 0.048) and the frequency of documentation of EOLD-relevant information (50.0% vs. 18.7%; difference: 31.3%, p < 0.001) increased from 2009 to 2019. Discussion: During a ten-year period from 2009 to 2019, the frequency of EOLDs and the completion rate of advance directives have increased considerably. In addition, EOLD-associated communication and documentation have further improved.

A working partnership: A review of shared decision-making in nephrology.

Patients with chronic kidney disease are required to make difficult decisions, negotiating between the risks, burdens and benefits for any proposed course. This process can be extremely challenging, since these decisions involve inherent risks, which can impact on survival and quality of life. Shared decision-making offers a patient-centred approach in partnering with patients to make decisions about their treatment, which reflect their values and preferences. Shared decision-making can improve patient preparedness, motivation, satisfaction, and adherence to the treatment or decision agreed upon. In this review article, we outline the key principles of shared decision-making, and provide a framework with communication strategies to facilitate shared decision-making. We highlight the broad range and context of decisions faced by patients in several areas of nephrology care and discuss patient-important outcomes, priorities and motivations that underpin their decision-making. Preserving patient autonomy through shared decision-making ensures close consideration of patient preferences to enhance satisfaction with the decision reached and optimize outcomes important to patients.

Precedent Autonomy and Surrogate Decisionmaking After Severe Brain Injury.

Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient's written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient's best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by using a patient's past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with "covert awareness" may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values.

Relying on nursing staff for oral hygiene care: A qualitative interpretive description study

Nurses may not prompt or offer assistance with oral hygiene care activities to patients who do not ask for help because they appear independent in their ability to perform their oral hygiene care. That is, nurses may be inclined to preserve patient autonomy over ensuring adequate oral hygiene outcomes. The purpose of this qualitative Interpretive Description study was to explore, with older patients in post-acute settings, their perspectives and experiences with being autonomous or relying on nursing staff for oral hygiene care. Bedside interviews with 21 patients revealed that: (a) their oral hygiene had deteriorated since hospitalization; (b) nurses may not be aware of patients’ oral health values or offer help unless asked; and (c) patients are generally open to being asked if they need help with oral care, being prompted to complete oral care, being asked if they have completed oral care, and having nurses ensure adequate oral care.

Elucidating the End-of-Life Experience of Persons With Amyotrophic Lateral Sclerosis.

Amyotrophic lateral sclerosis (ALS) is a fatal motor neuron disease that occurs in 4 among 100 000 people in the United States. Individuals with ALS gradually lose their ability to control voluntary muscles, diminishing their ability to communicate. A comprehensive multidatabase search retrieved 31 qualitative research articles that addressed persons with end-of-life experiences with ALS. Inclusion/exclusion criteria were applied and a critical appraisal was applied for the final 8 included articles. First-person data extraction from the final articles represented emergence of 3 themes significant to persons with ALS: decisions for life-sustaining support, coping and fear of what is to come, and communication with providers. Tracheostomy and ventilation as a means of prolonging life were important considerations for individuals with ALS. Persons with ALS struggled emotionally with their sudden loss of control and facing their demise. Some facets in which they did exert control, such as living wills, were hindered by patient and health care provider communication. Effective communication in end-of-life circumstances is paramount to preserving patient autonomy and dignity. This can be achieved by the patients conveying their preferences with respect to end-of-life care in advance, as well the nurses and other health care providers supporting the patients emotionally as they cope with terminal illness. Understanding patients' views regarding end-of-life circumstances is pertinent to nurses and other health care providers as they plan for palliative care.

The COAST stroke advance directive: A novel approach to preserving patient autonomy.

Within the field of neurology, there has been limited discussion of how to best respect patient autonomy in patients presenting with an acute stroke, who often have impairments in language and cognition. In addition to performing a detailed neurologic examination and providing a thorough timeline of their current presentation and medical history, these patients and their families are then asked to quickly make critical medical decisions regarding acute stroke therapies (thrombolysis and endovascular therapy). These discussions are often limited by time constraints and inadequate opportunities for patient education regarding acute stroke care. This article discusses some of the challenges of preserving patient autonomy in patients presenting with acute stroke and the advent of a stroke advance directive (Coordinating Options for Acute Stroke Therapy [COAST]) aimed to overcome these obstacles.

Functional Movement Disorders and Placebo: A Brief Review of the Placebo Effect in Movement Disorders and Ethical Considerations for Placebo Therapy.

Functional movement disorders are common and disabling neurologic conditions. Patients with functional neurologic disorders represent a large proportion of neurology clinic referrals, and limited availability of subspecialty care creates a considerable burden for the healthcare system. These conditions are currently treated with a combination of physical therapy and cognitive behavioral therapy, with variable success. We searched the Medline database for studies on the epidemiology and physiology of functional movement disorders, as well as those on the placebo effect in movement disorders. We reviewed and summarized the literature on these topics and explored ethical issues concerning the administration of placebos to patients with functional movement disorders. Studies of placebos, particularly in patients with movement disorders, have shown that these "inert" agents can provide demonstrable neurophysiologic benefits, even in open-label studies. Physician surveys have shown that many administer placebos for diagnostic and therapeutic purposes, although there are ethical concerns about this practice. We used a principle-based approach and reviewed ethical arguments for (justice and beneficence) and against (non-maleficence and autonomy) the use of placebos in functional movement disorders. In this context, we argue for the importance of the therapeutic alliance in preserving patient autonomy while exploring the potential benefits of placebo therapy. An ethical argument is presented in support of nondeceptive clinical placebo use for the treatment of functional movement disorders. Patient and clinician attitudes regarding the use of placebos should be investigated before placebo-therapy trials are conducted.

High-field intraoperative MRI in glioma surgery: A prospective study with volumetric analysis of extent of resection and functional outcome

BackgroundHigh-field intraoperative MRI (IoMRI) is a useful tool to improve the extent of glioma resection (EOR). ObjectiveTo compare the interest of 1.5T IoMRI in glioma surgery between enhancing and non-enhancing tumors, based on volumetric analysis. MethodsA prospective single-center study included consecutive adult patients undergoing glioma surgery with IoMRI. Volumetric evaluation was based on FLAIR hypersignal after gadolinium injection in non-enhancing tumors and T1 hypersignal after gadolinium injection in enhancing tumors. Endpoints comprised: residual tumor volume (RTV), EOR, workflow and clinical outcome on Karnofsky performance score (KPS). ResultsFifty-three surgeries were performed from July 2014 to January 2016. Thirty-four patients underwent one IoMRI, and 19 two IoMRIs. In non-enhancing tumors, intraoperative RTV on 1st IoMRI T2/FLAIR was higher than in enhancing tumors on T1 sequences (7.25cm3 vs. 0.74cm3, respectively; P=0.008), whereas the RTV on 2nd IoMRIs and final RTV were no longer significantly different. After IoMRI, 72% of patients underwent additional resection. In non-enhancing tumors, EOR increased from 77.3% on 1st IoMRI to 97.4% on last MRI (P<0.001). Taking all tumors together, final RTV values were: median=0cm3, mean=3.9cm3. Mean final EOR was 94%. In 25% of patients, KPS was reduced during early postoperative course; at 3 and 6 months postoperatively, median KPS was 90. ConclusionIntraoperative MRI guidance significantly enhanced the extent of glioma resection, especially for non- or minimally enhancing tumors, while preserving patient autonomy.

Seven Ethical Issues Affecting Neurosurgeons in the Context of Health Care Reform.

Ethical discussions around health care reform typically focus on problems of social justice and health care equity. This review, in contrast, focuses on ethical issues of particular importance to neurosurgeons, especially with respect to potential changes in the physician-patient relationship that may occur in the context of health care reform.The Patient Protection and Affordable Care Act (ACA) of 2010 (H.R. 3590) was not the first attempt at health care reform in the United States but it is the one currently in force. Its ambitions include universal access to health care, a focus on population health, payment reform, and cost control. Each of these aims is complicated by a number of ethical challenges, of which 7 stand out because of their potential influence on patient care: the accountability of physicians and surgeons to individual patients; the effects of financial incentives on clinical judgment; the definition and management of conflicting interests; the duty to preserve patient autonomy in the face of protocolized care; problems in information exchange and communication; issues related to electronic health records and data security; and the appropriate use of "Big Data."Systematic social and economic reforms inevitably raise ethical concerns. While the ACA may have driven these 7 to particular prominence, they are actually generic. Nevertheless, they are immediately relevant to the practice of neurosurgery and likely to reflect the realities the profession will be obliged to confront in the pursuit of more efficient and more effective health care.

Modeling The Economic Burden Of Adult Vaccine-Preventable Diseases In The United States.

Vaccines save thousands of lives in the United States every year, but many adults remain unvaccinated. Low rates of vaccine uptake lead to costs to individuals and society in terms of deaths and disabilities, which are avoidable, and they create economic losses from doctor visits, hospitalizations, and lost income. To identify the magnitude of this problem, we calculated the current economic burden that is attributable to vaccine-preventable diseases among US adults. We estimated the total remaining economic burden at approximately $9billion (plausibility range: $4.7-$15.2billion) in a single year, 2015, from vaccine-preventable diseases related to ten vaccines recommended for adults ages nineteen and older. Unvaccinated individuals are responsible for almost 80percent, or $7.1billion, of the financial burden. These results not only indicate the potential economic benefit of increasing adult immunization uptake but also highlight the value of vaccines. Policies should focus on minimizing the negative externalities or spillover effects from the choice not to be vaccinated, while preserving patient autonomy.