This study examines the factors that influence how patients, families, and clinicians make decisions about risk-taking and safety in brain injury rehabilitation. Despite the importance of these decisions, particularly during transitions in care, there is scant literature to help guide these care partners in ethical and clinical decision-making related to risk-taking and safety. This study suggests that there are tensions between rehabilitation and patient safety efforts. Risk-taking lies at the core of brain injury rehabilitation; however, decisions about risk-taking are also influenced by conflicting values, system pressures, and patient abilities. A relational approach to autonomy that addresses patients’ decisional and functional abilities within their social contexts is more nuanced than a liberal individualist approach to autonomy, and provides a better framework for understanding decision-making. Relational autonomy may help clinicians make decisions that better balance risk-taking and safety, decisions that are committed to the principles of respecting autonomy and advancing safety.

This study examines the factors that influence how patients, families, and clinicians make decisions about risk-taking and safety in brain injury rehabilitation. Despite the importance of these decisions, particularly during transitions in care, there is scant literature to help guide these care partners in ethical and clinical decision-making related to risk-taking and safety. This study suggests that there are tensions between rehabilitation and patient safety efforts. Risk-taking lies at the core of brain injury rehabilitation; however, decisions about risk-taking are also influenced by conflicting values, system pressures, and patient abilities. A relational approach to autonomy that addresses patients’ decisional and functional abilities within their social contexts is more nuanced than a liberal individualist approach to autonomy, and provides a better framework for understanding decision-making. Relational autonomy may help clinicians make decisions that better balance risk-taking and safety, decisions that are committed to the principles of respecting autonomy and advancing safety.

The current blanket prohibition of assisted death in Canada continues to be the subject of much debate. This thesis examines the shortcomings and strengths of the Belgium Law on Euthanasia of 2002 and discusses whether similar legislation could be implemented in Canada. More particularly, the thesis looks at the spirit and intent of the law, the conditions under which assisted death is permitted, and the control mechanism present in the Belgian law. The analysis of Belgium’s ten years of experience with assisted death allows us to argue that the risks inherent in assisted death regime can be controlled in a system where an exception is made for competent people in a situation of unbearable suffering. Important safeguards to prevent abuse and protect people from vulnerable groups are identified in the Belgian statute. This thesis recommends in its conclusion to regulate assisted death as an expression of compassion for suffering patients, in line with Canada’s longstanding commitment to respect for patient autonomy.

The current blanket prohibition of assisted death in Canada continues to be the subject of much debate. This thesis examines the shortcomings and strengths of the Belgium Law on Euthanasia of 2002 and discusses whether similar legislation could be implemented in Canada. More particularly, the thesis looks at the spirit and intent of the law, the conditions under which assisted death is permitted, and the control mechanism present in the Belgian law. The analysis of Belgium’s ten years of experience with assisted death allows us to argue that the risks inherent in assisted death regime can be controlled in a system where an exception is made for competent people in a situation of unbearable suffering. Important safeguards to prevent abuse and protect people from vulnerable groups are identified in the Belgian statute. This thesis recommends in its conclusion to regulate assisted death as an expression of compassion for suffering patients, in line with Canada’s longstanding commitment to respect for patient autonomy.

Thesis advisor: Sharlene N. Hesse-Biber / This dissertation seeks to understand obstetricians’ lived experience of decision-making in childbirth and investigate how the organizational context within which obstetricians work influences how they make treatment decisions. Understanding how obstetricians make decisions in childbirth is important because maternity care in the United States is in crisis. Our system is failing women on multiple accounts: between 1990 and 2013, maternal mortality more than doubled in the United States, and is higher than most other high-income countries. Furthermore, women continue to suffer from abusive practices by maternity care providers who dismiss their concerns and sometimes outright refuse to honor their self-determination in childbirth. Today multiple stakeholders acknowledge a need for maternity care reform; this creates new challenges for health care policy and opportunities for social science research. Obstetrician-gynecologists provide the majority of maternity care to American women, and this dissertation examines their lived experience of decision-making in birth and analyzes how a range of social forces affect this process. To investigate this phenomenon I performed 50 in-depth interviews with obstetricians from Massachusetts, Louisiana and Vermont about how they make patient care decisions in birth. The specific research questions and analysis for each chapter evolved through an iterative process that combined analytical grounded theory and template analysis. I present this in a three-article format. In article one I show how shift-work models of labor and delivery pose challenges to using a patient-centered approach to decision-making. Obstetricians either work shifts in labor and delivery or they work on-call for their patients’ births. The current thinking is that shifts are good because they allow work-life balance for doctors, reduce fatigue, and reduce convenience-based decisions. Shift work models assume that doctors and patients are interchangeable because doctors will follow protocols and standards of care produced by medical professional organizations. I argue shift work does not work in practice the way it does in theory. I explain how there are not standards for many decisions in birth, instead these decisions are characterized by medical uncertainty. In these cases, doctors rely on patient-centered approaches to make decisions. But shift work limits doctors’ ability to use patient-centered approaches. I found that shift-work models of hospital care do not provide doctors the opportunity to get to know their patients and understand their preferences. In practices that do not depend on shift work, the doctor patient relationship is far less fragmented and doctors tend to experience less conflict with their patients and are less likely to rely on stereotypes that reproduce social inequality. In article two I examine obstetricians’ understandings of convenience as a motivation in decision-making. Anecdotal evidence suggests that obstetricians sometimes make clinical care decisions less out of concern for their patients and more out of concern for their own time and schedule. This may be a particular problem in on-call models. In this paper I show doctors’ stories match anecdotal evidence: Some obstetricians make clinical decisions in birth based partially on their own convenience. Yet others actively resist the temptation of convenience, even in on-call care. A key dimension of this difference lies in doctors’ understandings of the nature of time in labor and the safety of interventions. Some doctors have a faster-the-better approach to birth and believe the routine use of interventions is the best way to practice in labor and delivery. These doctors frame their own convenience as legitimate because it overlaps with the idea that speeding up the labor is inherently good. Alternatively, other doctors believe time in labor is productive, and that interventions should be used judiciously because they increase risk of harm. These doctors cannot easily legitimize convenience because it conflicts with the reduction of interventions as a key dimension of this philosophy. I argue that because shift work poses serious challenges to patient-centered care, cultural change is a better avenue for reducing births of convenience. Article three addresses an ongoing question in medical sociology about whether physicians maintain control over their clinical work amidst challenges to their authority. Patient empowerment and standardization are two movements that sociologists have theorized in terms of weakening of doctors’ clinical discretion. I uncover how obstetricians draw on the conflicting nature of these approaches strategically to maintain their power in the face of a threat. Standards and patient empowerment act as countervailing powers; they drew on one to off set the challenge to their authority posed by the other. / Thesis (PhD) — Boston College, 2017. / Submitted to: Boston College. Graduate School of Arts and Sciences. / Discipline: Sociology.

The process of acquiring informed consents from patients belongs to one of the everyday activities of hospital personnel. The duty of submitting informed consent forms to patients is mostly in competence of the doctors. Nurses, however, are present during the entirety of patients' medical care and should be acquainted with all aspects of the informed consent. The process of acquiring the informed consents from patients admitted to intensive care unit (hereinafter ICU) is connected with a multitude of difficulties. The method of statistical analysis of data acquired by the questionnaire construction method was used for this quantitative research. 99 respondents participated in the questionnaire construction. The research took place within one hospital at chosen ICUs. The main goal of this thesis is to evaluate the process of acquiring informed consents from patients from the point of view of nurses and to identify the main issues connected with signing of informed consents. The results of the research show that patients are adequately informed by their physicians before signing the informed consents. Poor medical condition of patients admitted to ICUs may be seen as one of the main issues during the signing of informed consents. The research further shows that 50% of patients don't read the text of...

In the interplay of critical and self-conscious patients and an ever-aging society the question arises how far patient autonomy sensibly should go and which parameters are deemed to be relevant for end-of-life-decisions. The progress in medicine over the last decades has led on one hand to the possibility of saving lives and maintaining them in situations where before it seemed to be impossible. Nowadays Therefore more and more people are afraid that this boom can be to their detriment when it prolongs instead of shortens their suffering. The fear of unbearable pain and of loss of control fuels the discussion about whether or not euthanasia is morally permissible and should be legalized. This thesis deals with the questions: What speaks in favor of and against the legalization of euthanasia? What forms of treatment are subsumed under the term "euthanasia"? What is the current legal situation in Austria? How far should patient autonomy go? In order to answer these questions a literature research was done which revealed that active euthanasia is not allowed in Austria but in the Netherlands, Belgium, Luxemburg and partly allowed in Switzerland. Interviews conducted among medical staff showed that medical personnel in Austria mostly are in favor of active euthanasia because they are not satisfied with the end of life care that is provided at the moment. They also embrace the trend of patient autonomy and think that patients can have the autonomous wish to end their lives but that it is difficult to determine a patient's autonomy. The reason for this is that autonomy is a gradual value that comprises patients' capacity as well as patients' long-standing goals, values, and preferences that were developed during their life. Therefore it can be concluded that increasing the availability of appropriate end-of-life care could be a solution that prevents medical staff from taking uncomfortable decisions and still enables patients to die in a dignified way.

Intensivvården är ett fält där patienter vårdas för livshotande tillstånd. Där, trots en snabb teknologisk utveckling, det inte alltid är möjligt att rädda patientens liv. De här patienterna avlider för det mesta på IVA eller annan avdelning på sjukhuset. Data från palliativa registret tyder dock på att patienter i hög utsträckning önskar dö i hemmet om det är möjligt. Möjligheten att överföra patienter från intensivvårdsavdelning (IVA) till hemmet finns i vissa delar av världen men betraktas i de flesta länder som något extraordinärt. I det aktuella examensarbetet utforskas tidigare forskning inom området. Syftet med examensarbetet var att övergripande sammanställa forskning kring hur överföring av intensivvårdade patienter till hemmet i livets slutskede beskrivs. Examensarbetet har genomförts som en integrativ sammanställning av alla återfunna studier publicerade de tio senaste åren i fyra stora databaser. Resultatet visar att perspektiv från patient, anhöriga och personal står i centrum. För patienter och anhöriga handlar beslutet om att utöva sin autonomi och på ett värdigt sätt avsluta sitt liv. Kultur är en viktig faktor. Hos personalen dominerade tankar om hur överföringen ska gå till och kring vilka patienter som var lämpliga att överföra. Arbetet visar att överföring hem från IVA sker i flera delar av världen och att de som har varit inblandade i stort är positivt inställda. Sjuksköterskan spelar en viktig roll i hela processen, från att stödja patientens autonoma förmåga, samordna resurser och även i genomförandet av själva transporten. / Intensive care is an area where patients are treated for life threatening conditions where, even if development is happening quickly, the patients’ lifes cannot always be saved. These patients usually die at the ICU or in other general hospital wards. Data from the Swedish palliative register shows that a large portion of patients would prefer to die at home. The possibility to transfer patients from the ICU to home before death exists as a practice in some parts of the world but is usually seen as something out of the ordinary. In this master thesis earlier published studies on this practice were explored. The purpose was to describe the existing research regarding transferring patients from the ICU home to die. The method has been an integrative review of all retrieved articles published in four big databases during the last ten years. The results showed that the perspectives of patients, relatives and personnel are central. For patients and their relatives, the question of personal autonomy and a dignified end of life are of importance. For ICU staff the views are dominated by more practical concerns regarding how a transfer can be made and which patients were suitable for the practice. Transfer home from the ICU to die is happening around the world and those that have been involved report positive experiences. The ICU nurse plays an important role in the whole process, from first identifying the patient’s autonomic capacity in order to make such a decision, to coordinating resources and preparation of the transfer, and even in performing the transfer.

Thesis (DPhil (Philosophy))--University of Stellenbosch, 2010. / ENGLISH ABSTRACT: This study involves a critically evaluation of evidence-based patient choice as partnership model in clinical decision making. It pays attention to the emergence of the concept of autonomy in modern moral philosophy and in particular to the pivotal contributions of Immanuel Kant and John Stuart Mill in this regard. Against this background, it elaborates on the ethical principle of respect for autonomy, informed consent as paradigm for patient autonomy in clinical decision making, the conflicts that arise between the ethical concepts of autonomy and beneficence, the dominance of paternalism in clinical decision making, the challenges posed to the dominance of paternalism, the resulting emergence of the concept of partnership in clinical decision making and evidence-based patient choice as partnership model in clinical decision making. Moreover, it provides an exposition of the context, nature and practice of evidence-based patient choice and of the four key decision making skills required from health care professionals to involve patients in clinical decision making, namely shared decision making, risk communication, decision analysis, and the use of decision aids. Against this background, it critically evaluates the effectiveness of evidence-based patient choice as partnership model in clinical decision making by judging it in terms of the ethical concept of patient autonomy as reflected in the informed consent elements of competence, disclosure, understanding and voluntariness and indicates that none of the key skills of evidence-based patient choice can be regarded as completely adequate in honouring the principle of respect for autonomy in clinical decision making and that consequently each of these four key skills leave evidence-based patient choice with a challenge that needs to be addressed from another angle in order to establish and maintain the ethical principle of respect for autonomy. In response to these challenges, the study makes three recommendations for the transformation of evidence-based patient choice to a therapeutic alliance health care, namely to review and further develop the philosophical foundations of evidence-based patient choice, to consider the continental philosophical perspectives of Edmund Husserl, Jean-Paul Sartre, Maurice Merleau-Ponty and Jürgen Habermas on the evidence-based patient choice challenges of the separate worlds of doctor and patient, the constitution of meaning in illness and the dangers of abstractions and informational manipulation in health care and to transform the practice of evidence-based patient choice to a therapeutic alliance in health care by individualising the provision of information by embedding it in the human processes of sense making, knowledge creation and decision making through which information is transformed into insight, knowledge and action. / AFRIKAANSE OPSOMMING: Die studie behels 'n kritiese evaluering van evidence-based patient choice as vennootskapsmodel in kliniese besluitneming. Dit verwys na die opkoms van moderne morele filosofie en in die besonder na die deurslaggewende bydraes van Immanuel Kant en John Stuart Mill in hierdie verband. Teen hierdie agtergrond bespreek dit die etiese beginsel van respek vir outonomie, ingeligte toestemming as paradigma vir pasiënt outonomie in kliniese bsluitneming, die moontlike konflikte tussen die etiese konsepte van outonomie en weldadigheid, die dominansie van paternalisme in kliniese besluitneming en die uitdagings wat dit ontlok het, die gevolglike ontstaan van die konsep van vennootskappe in kliniese besluitneming, asook evidence-based patient choice as vennootskapsmodel in kliniese besluitneming. Voorts verskaf die studie 'n uiteensetting van die konteks, wese en praktyk van evidence-based patient choice, asook van die vier sleutelvaardighede wat van medici vereis word ten einde pasiënte in kliniese besluitneming te betrek, naamlik gedeelde besluitneming, die kommunikasie van risikos, die analise van besluitneming en die gebruik van besluitnemingshulpmiddels. Teen hierdie agtergrond onderneem die studie 'n kritiese evaluering van die effektiwiteit van evidence-based patient choice deur dit te meet aan die ingeligte toestemming elemente van kompetensie, blootlegging, verstaan en vrywilligheid en toon aan dat geeneen van hierdie sleutelvaardighede as volledig toereikend in die nastreef van die beginsel van respek vir outonomie in kliniese besluitneming beskou kan word nie en evidence-based patient choice daarom met uitdagings laat wat vanuit 'n ander hoek bearbei moet word ten einde die beginsel in die praktyk te vestig en te onderhou. In reaksie hierop maak die studie drie aanbevelings met die oog op die transformering van evidence-based patient choice na 'n terapeutiese alliansie in gesondheidsorg, naamlik om die filosofiese grondslae van evidence-based patient choice in oënskou te neem en verder te ontwikkel, om oorweging te skenk aan die kontinentaal filosofiese perspektiewe van Edmund Husserl, Jean-Paul Sartre, Maurice Merleau-Ponty en Jürgen Habermas met betrekking tot die evidence-based patient choice uitdagings van die verskillende wêrelde van dokter en pasiënt, die konstituering van betekenis in siekte en die gevare verbonde aan die abstrahering en manipulering van inligting in gesondheidsorg en om op grond hiervan die praktyk van evidence-based patient choice te transformer. Dit sal gedoen word deur die verskaffing van inligting aan pasiënte te individualiseer deur dit in te bed in the menslike prosesse van sinmaking, kennis generering en besluitneming waardeur inligting getransformeer word tot insig, kennis en aksie.

Thesis (MPhil)--Stellenbosch University, 2009. / A research assignment submitted in partial fulfilment of the requirements of the degree Master of Philosophy (MPhil) in rehabilitation at Stellenbosch University / ENGLISH ABSTRACT: Introduction: Stroke is a growing healthcare problem in South Africa. It contributes significantly to the burden of disease and is the largest cause of disability. Rehabilitation can significantly improve recovery and outcomes of stroke survivors particularly if implemented in the correct manner and through using certain approaches. The aim of this study was to examine the practice of doctors with regards to stroke rehabilitation in private acute-care hospitals in the Western Cape Metropole. In particular, attention has been given to the degree to which doctors in the private health care sector shared information with first time stroke patients. The study design was retrospective and descriptive in nature. Data collection was primarily of a quantitative nature although some qualitative data has been collected to elaborate on quantitative findings. Two self-designed questionnaires were used to collect data. Data from doctor-participants were collected to examine the use of care protocols. Data from both groups of participants were collected to determine which practices were prefered. In particular it was sought to ascertain what team work approach was favoured by doctors. To do this the method of communication among team members was examined. It was also sought to ascertain how information regarding diagnosis, prognosis, risk factors, post–acute rehabilitation options and discharge planning was shared. In total thirty-five doctors and forty-eight patients were interviewed. Quantitative data was captured on an excel spreadsheet and analysed with the help of a STATISTICA software package. A p value of less than 0.05 was deemed statistically significant. Results showed that none of the doctor participants had any formal rehabilitation qualification. It was found that stroke care protocols were used by 46% of doctor participants, while 89% acknowledged the advantages of a set protocol. The majority of doctors (57%) operated as part of a multidisciplinary team. Communication between team members regarding the patient’s management plan was done on a very informal basis with only 11% of doctors using ward rounds and none using team meetings for this purpose. Opinions differed between the two study groups on the frequency of information sessions (p = .00039). Only six % of doctors included the patient and family in the rehabilitation team. A large discrepancy was seen when it came to opinions on sharing information regarding diagnosis, prognosis, stroke risk factors, post-acute rehabilitation and discharge planning. P values ranging from 0.00013 to 0.0041 showed that the difference between the opinions of patients and doctors on these issues was statistically significant. Opinions also differed between the two groups when the frequency of information sessions was compared (p = 0.00039). Only 28% of patient participants were included in the decisionmaking process regarding further post-acute rehabilitation and in most cases the final decision was made by the doctor or the medical insurance company. Qualitative data highlighted some patients’ dissatisfaction regarding the post-acute rehabilitation process and indicated a problem with regard to the recognition of early stroke warning signs by general practitioners and the emergency treatment of these. The conclusion was that there is a great need for further motivation and education of doctors with respect to advanced research projects, further specialisation as well as the implementation of important rehabilitation modalities. It is also important that the patient himself acts as a fully-fledged team member. Recommendations were that administrators in both, the private and public health care sectors as well as non-government organisations and government welfare organisations identify the reasons for doctors’ hesitation to implement existing knowledge; that they make stroke rehabilitation training available and that they ensure that doctors implement the existing and new knowledge on all aspects of acute and post-acute stroke rehabilitation i.e. use of set care protocols, team work approach and sharing information on diagnosis, prognosis, risk factors, post–acute rehabilitation options and discharge planning when managing stroke patients. It was also recommended to promote more research projects which are implemented in the private health care sector. / AFRIKAANSE OPSOMMING: Beroerte is reeds die grootste enkele oorsaak van gestremdheid in Suid Afrika en steeds aan die toeneem in insidensie. Navorsing het bewys dat rehabilitasie geskoei op wetenskaplik bewese metodes die uitkomste van beroerte lyers beduidend kan verbeter. Daarom was dit die doel van die studie om vas te stel tot watter mate dokters, werksaam in die privaat sektor in die Wes Kaapse Metropool, bewese rehabilitasie metodes implimenteer tydens behandeling van akute beroerte pasiënte. Spesifieke areas waaraan aandag geskenk is, was die gebruik van beroerte protokolle, die volg van die interdissiplinêre spanwerk benadering, kommunikasie metodes tussen spanlede en die deurgee van inligting met betrekking tot die diagnose, prognose, risiko faktore, opvolg rehabilitasie en ontslag beplanning aan pasiënte na `n eerste beroerte. Die studie was retrospektief en beskrywend van aard. Daar was primêr kwantitatiewe data ingesamel met behulp van twee self ontwerpde vraelyste. ‘n Klein hoeveelheid kwalitatiewe data is aanvullend ingesamel om kwantitatiewe bevindings toe te lig. 35 dokters en 48 pasiënte het aan die studie deelgeneem. ‘n STATISTICA sagteware pakket is gebruik vir die analise van kwalitatiewe data. ‘n P waarde van minder as 0.05 is as statisties beduidend beskou. Nie een van die dokters wat aan die studie deelgeneem het, het nagraadse opleiding in rehabilitasie gehad nie. 46% van dokters het beroerte protokolle gebruik in hulle praktyke, terwyl 89% gevoel het dat die gebruik van protokolle voordele inhou. Waar spanwerk gebruik was (57% van dokters), is die multidissiplinêre benadering gevolg. Kommunikasie tussen spanlede het meesal op `n informele basis geskied. Geen dokter het spanvergaderings gehou nie. 11% van dokters het saalrondtes gehou waartydens met spanlede gekommunikeer is. 6% van dokters het die pasiënt en familie ingesluit in die rehabilitasie span. Volgens dokters was daar beduidend meer inligting sessies met pasiënte gehou as volgens pasiënte (p = 0.00039). Die verskil in mening tussen die twee groepe is ook waargeneem met betrekking tot die hoeveelheid inligting wat verskaf is oor diagnose, prognose, risiko faktore, post akute rehabilitasie en onslag beplanning (P waardes het gewissel van 0.00013 tot 0.0041). 25% van pasiënte het deelgeneem aan die besluitnemings proses oor opvolg rehabilitasie. Die finale besluit hieroor was in die meerderheid van gevalle deur die dokter en die mediese versekeringsskema geneem. Dit het uit die kwalitatiewe data geblyk dat van die pasiënte ongelukkig was met die opvolg rehabilitasie wat hulle ontvang het. Voorts het pasiënte gevoel dat algemene praktisyns beter ingelig behoort te wees oor die vroeë waarskuwingstekens van beroerte sowel as die noodbehandling van die tekens. Die navorser het tot die gevolgtrekking gekom dat dokters oortuig moet word van die belang van verdere navorsing, spesialisasie in rehabilitasie en die implementasie van bewese beroerte rehabilitasie metodes. Sy beveel aan dat administrateurs van beide die privaat en staatssektor sowel as verteenwoordigers van nie regerings organisasies betrokke raak om bogenoemde te bewerkstellig. Daar moet vasgestel word waarom dokters huiwerig is om bestaande kennis te implemteer. Beroerte rehabilitasie opleiding moet beskikbaar gestel word aan dokters en dokters moet aangemoedig word om bewese kennis soos die gebruik van protokolle, interdissiplinêre spanwerk en verskaffing van inligting oor diagnose, prognose, risiko faktore, opvolg rehabilitasie en ontslag beplanning toe te pas in die praktyk. Die doen van meer navorsing in die privaat sektor word ook aangemoedig.