Advance care planning (ACP) is defined as a process of open communication and information sharing between the health care team, the patient, and his/her family to enable patient’s wishes for future care and medical treatment to be explored and supported. The purpose of this study was to investigate the knowledge, attitudes, and experiences of medical-surgical nurses working in Winnipeg, Manitoba in relation to ACP. This cross-sectional descriptive study involved the use of a questionnaire developed and used in Singapore and assessed for face validity by local experts. A sample of 218 registered nurses responded to the web-based survey. Nurses were found to have: a sound understanding of foundational ACP concepts; communal and also varied attitudes toward ACP; and reported variable levels of involvement in ACP with patients and families. The results of this study can be used to inform change within both the educational and clinical care settings. / October 2015

Physical and psychosocial symptoms in advanced chronic obstructive pulmonary disease (COPD) are cumulative and profound; global financial and human costs are huge. COPD in late stages runs an unpredictable downward course of increasing, potentially fatal exacerbations. Nevertheless many physicians avoid advance care planning in this context, a choice that tends to promote last minute crisis decision-making. To explore a more ethically sound proactive approach to end-of-life care decision-making I conducted a qualitative study informed by the question: “What is required for meaningful and effective advance care planning in the context of advanced COPD?” Fifteen participants (eight patients with advanced COPD plus seven intimate others) participated in two in-home advance care planning discussions that incorporated patient-centred care principles. Session transcripts were analyzed using "interpretive description." Despite initial wariness, participants were able to discuss their care-related hopes and preferences and reported that the process was a positive one. Interpretation of the positive feedback suggested participants experienced the process as a chance to: a) talk with an attentive clinician, b) learn, c) consider care-related goals and preferences, and, d) have intimate others hear about these goals/preferences. Interpretation of the process that led to this positive assessment is described in terms of a thematic network. The overarching global theme of this network was "advance care planning as collaborative care," which involved three organizing themes--partnering, negotiating ambiguity, and being a resource--and a cluster of basic themes related to each of these. The "collaborative care" approach is discussed as a guide to advance care planning in advanced COPD. Like other advance care planning models, the study approach included a skilled clinician facilitator, provision of targeted information, and attention to readiness. There were four new elements: focus on caring, engaging hope, facilitator reflective praxis, and contextual sensitivity. While potentially enhancing the "care" dimension in advance care planning, the study approach may incidentally improve resource allocation and satisfaction with outcomes. Done well it may enhance decision-making and care planning, and, just as importantly, be experienced as care itself at a time and by those often neglected in this regard.

Thesis (Ph. D.)--University of Washington, 2005. / Vita. Includes bibliographical references (leaves 110-120).

Background: Advance care planning (ACP) is a method used for patients to express in advance their preferences, beliefs and values for life-sustaining treatments at the end-of-life. With growing ethnocultural diversity in Canada, health care providers are managing an increasing number of diverse beliefs/values that are commonly associated with preferences for mechanical ventilation (MV) at the end-of-life. The aim of this project is to explore methods used by health care providers to set care plans for MV with ethnocultural populations. Methods: Qualitative analysis of semi-structured interviews with open-ended questions and two clinical vignette components was conducted with eight (8) health care providers who engage in ACP. Participants were recruited using a snowball-sampling approach from five acute-care hospitals within the Ottawa region. Results: Three major themes emerged from collected dataset: 1) Goals of care across illness trajectories, 2) Respecting beliefs, values, and wishes for care, and 3) Cross-cultural support in ACP. Using a value-based approach in ACP was described as an effective method for managing and interpreting diverse beliefs/values that impact decisions for MV. However, organizational, systemic, and personnel barriers that exist continue to hinder the provision of cross-cultural ACP across health settings. Contexte: La planification préalable des soins (PPS) est une méthode utilisée par les patients et les familles pour exprimer à l'avance leurs préférences liées aux traitements de prolongation de vie. En raison de la diversité ethnoculturelle croissante au Canada, les professionnels de la santé sont confrontés à des croyances et valeurs différentes, souvent associées à une préférence pour l’initiation et le maintien de la ventilation mécanique (VM) en fin de vie. L'objectif de ce projet consiste à explorer les stratégies utilisées par les professionnels de la santé lors des discussions associées à la VM auprès d'une clientèle multiculturelle. Méthodes: Huit (8) participants (médecins et infirmières) impliqués dans la PPS ont accepté de participer à une entrevue semi-structurée avec des questions ouvertes et deux scénarios cliniques. Les participants ont été recrutés à l'aide de la méthode d’échantillonnage par réseau (« boule de neige ») de cinq hôpitaux de la région d'Ottawa. Résultats: Trois grands thèmes ont émergé des entrevues: 1) les objectifs de soins à travers les trajectoires de la maladie, 2) le respect des croyances, valeurs et souhaits pour les soins, et 3) le soutien dans la PPS en contexte interculturel. Lors de la PPS, utiliser une approche basée sur les valeurs a été décrite comme une méthode efficace pour interpréter et prendre en compte les diverses croyances et valeurs qui ont une influence sur les décisions liées à la VM. Cependant, les barrières systémiques, organisationnelles et personnelles continuent d'entraver les services associés à la PPS en contexte interculturel dans les établissements de santé.

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The purpose of this study is to explore what knowledge dementia caregivers have about advance care planning (ACP), how they learn to execute formal advance directives (ADs) or have engaged in an informal ACP process, and how they understand their roles as decision makers for the patients. Factors that contribute to the completion of an ACP process such as demographic, psychosocial, and situational factors are identified. From the grounded theory data analysis, a theory emerged about how ACP is accomplished and used by caregivers. Findings reveal that caregivers understand ACP as having the power to shape the dying process for dementia patients. It is not just about executing formal written ADs but how caregivers exercise that power. Caregivers’ knowledge and beliefs are reflected in their behavior regarding ACP in both how they do the ACP process and how they use ACP. For the caregivers in this study, the process of ACP occurs along a trajectory from: years before dementia to dementia diagnosis to end stage and death. At each of these stages, actions taken by the caregivers and their motivation are identified. Three key features of the ACP process in all three stages are examined: conversations within the family and with trusted others, gaining knowledge of ACP, and keeping ACP documents. How caregivers use ACP is based on how they define their roles as decision makers for their patients by: accepting responsibility for making difficult decisions regarding treatment for the patients, using ACP as an effective tool to shape the dying process for their patients, and doing battle with health care professionals to honor patients’ wishes. This definition is shaped by the meaning caregivers give to ACP, how caregivers understand life sustaining measures, and caregivers’ knowledge of patients’ end-of-life wishes. This new theory, the Dementia Caregiver Advance Care Planning Theory, adds new knowledge as the first model specific to dementia caregivers and adds dimension and depth to the current existing ACP models by detailing an ACP process, demonstrating the impact of conversations on the process, and identifying both the most important influences and the primary relationship in the decision making process.

Background: Numerous studies demonstrate benefits of using advance care planning (ACP) in the general practice setting. Despite this, providers do not regularly initiate ACP and only one third of Americans have completed an advance directive (AD). This number is even lower among ethnic and minority groups. Community health center (CHC) providers have the opportunity to improve the quality of end-of-life (EOL) care and reduce healthcare disparities affecting medically underserved populations, yet no research has been conducted to identify CHC providers' practices, knowledge and attitudes towards ACP. Addressing this query may assist researchers in identifying optimal strategies for improving ACP delivery in this setting, ultimately leading to improved quality of EOL care for the populations served. Purpose: The study purpose was to assess Arizona CHC providers' practices, knowledge and attitudes towards ACP. Setting: The study setting was federally qualified community health centers located in urban and rural sites throughout Arizona. Participants: Study participants (N = 38) were predominantly middle-aged females practicing for an average of 13 years. 60% of providers were Master's or Doctor of Nursing Practice (DNP) prepared providers while 40% were Doctor of Medicine (MD) or Doctor of Osteopathy (MD). Methods: This study used a descriptive correlational quantitative research design. The "EOL Decision Making Survey" instrument was adapted into an electronic survey and distributed to 514 physician and non-physician CHC providers. Data analysis was performed using PASS and SPSS statistical software. Results: This sample of Arizona CHC providers was reasonably knowledgeable about Arizona state law and clinical application of ACP. Physician providers had greater knowledge and greater confidence in their answers related to Arizona state law compared to non-physician providers. Participants were largely comfortable with counseling patients in ACP and exhibited mostly positive attitudes toward ACP. Older respondents with greater years' experience tended to have greater knowledge of the clinical application of ACP as well as greater positive attitudes towards ACP. Providers with greater years' experience tended to have greater comfort in counseling patients in ACP. Despite these positive findings, routine initiation of ACP in this setting was low (44%). Conclusions: Though Arizona CHC providers have reasonable knowledge related to ACP, are comfortable with counseling patients in ACP and have positive attitudes towards ACP, less than half routinely initiate ACP conversations with their patients. Though more research is needed to validate these findings, targeted educational interventions and process changes may help improve ACP delivery rates in this setting.

As diretivas antecipadas de vontade para o fim da vida são documentos que expressam os desejos da pessoa relacionados aos procedimentos que podem ser aplicados a ela em uma situação de assistência médica no fim da vida. Nesse sentido, as diretivas são úteis para informar as equipes de assistência médica a respeito dos tipos específicos de tratamento que o paciente permite, ou não permite, quando não estiver apto a manifestar suas vontades em uma hipotética situação futura de incapacidade. Este tipo de documento foi elaborado nos Estados Unidos na década de 1970, e foi introduzido no ordenamento ético brasileiro pela Resolução 1995/2012 do Conselho Federal de Medicina. O objetivo desta dissertação é estudar essa norma ética sob o enfoque do direito penal, uma vez que as diretivas antecipadas de vontade para o fim da vida possuem uma íntima relação com a ortotanásia e a eutanásia, que são passíveis de sanção penal no Brasil. Assim, é fundamental analisar as diretivas antecipadas utilizando as ferramentas da doutrina penal, e princípios como os da dignidade humana e razoabilidade. O objetivo é pesquisar as qualidades, imperfeições e limites das diretivas antecipadas sob o ordenamento jurídico nacional, e também compreender as bases legais das diretivas antecipadas, que são os institutos da autonomia e do consentimento. Concluímos que, ainda que as diretivas antecipadas de vontade sejam uma norma ética bem-vinda, demandam algumas melhorias e refinamentos, que poderiam ser representados pelos planejamentos antecipados de tratamentos, um tipo de documento direcionado aos valores de vida das pessoas. Além disso, uma mudança de paradigma relacionada à eutanásia, particularmente a eutanásia passiva e a ortotanásia, no sentido de descriminalizá-las, seria importante para que as diretivas antecipadas tenham eficácia no Brasil. / Advance directives for dying patients are documents which express personal desires related to procedures that may be applied to people in a situation of medical assistance in the end of life. In this sense, they are useful to make health assistance teams know about what kind of specific treatment the patients permit, or do not permit, when they are not able to communicate their wishes in a hypothetical and future situation of disability. This kind of document was created in the United States in the seventies, and entered Brazilian ethical law by Resolution 1995/2012 of the Federal Council of Medicine. The aim of this dissertation is to study this ethical rule by means of the criminal law, because advance directives have a close relation to euthanasia and ortothanasia, which are prone to criminal sanction in Brazil. Therefore, it is paramount to analyze the advance directives using the doctrinal tools of criminal law and principles like human dignity and reasonability. The goal is surveying the qualities, inadequacies and limits of advance directives under Brazilian law, and also to understand the legal basis of the advance directives, which are the institutes of autonomy and consent. We concluded that, although advance directives for dying patients are a welcome ethical law, it demands some improvement and refinement, which could be represented by the advance care planning, a kind of document that is focused on the life values of people. Furthermore, a change of paradigm related to euthanasia, particularly passive euthanasia and ortothanasia, in the direction of making them apart of criminalization, would be vital to promote the adequate efficacy of the advance directives in Brazil.