Les directives anticipées des personnes atteintes d’une démence de type Alzheimer : Comment faire pour bien faire?

Article

Strange bedfellows: The ethics and politics of medical futility in Texas

Background: Futile medical treatments are interventions that are not associated with a benefit to the patient. The definition and concept of medical futility are controversial. The Texas Advance Directives Act (TADA) was passed in 1999 to address medically inappropriate interventions by allowing providers to withdraw inappropriate interventions against a surrogate decision maker's wishes following a review, attempt to transfer the patient, and 10-day waiting period. The original legislation was a negotiated compromise by players across the political spectrum. However, in recent years there has been increasing controversy regarding TADA and attempts to alter its applicability in Texas. ^ Purpose: The purpose of this project was to apply Paul Sabatier's advocacy coalition framework (ACF) to gain understanding into the historical, ethical, and political basis of the initial compromise, and determine the sources of conflict that have led to increased opposition to TADA. ^ Methods: Using the ACF model, key actors within the medical futility policy debate in Texas were aggregated into coalitions based on shared beliefs. A narrative summary based analysis identified the core elements of the policy subsystem, as well as the constraints and resources of the subsystem actors. Externalities that promoted adjustments to coalition beliefs and tactics used by coalition participants were analyzed. Data sources included review of the published literature regarding medical futility, as well as analysis of published newspaper accounts and editorials regarding the medical futility issue in Texas, legislative testimony, and review of weblogs and online commentaries dealing with the issue. ^ Results: Primary coalition participants in developing compromise legislation in 1999 were the Providers and Vitalists, with Autonomists gaining a prominent role starting in 2006. Internal factors associated with the breakdown of consensus included changes to the makeup of the governing coalition and changes in individual case information available to the Vitalist coalition. Externalities related to the intertwining of the Sun Hudson case and the Terri Schiavo case generated negative publicity for the TADA from progressive and conservative viewpoints. Dissemination of information in various venues regarding contentious cases was associated with more polarization of viewpoints, and realignment of coalition alliances. ^ Conclusions: The ACF provided an outline for the initial compromise over the creation of the Texas Advance Directives Act as well as the eventual loss of consensus. The debate between the Provider, Vitalist, and Autonomist coalitions has been affected by internal policy evolution, changes in the governing coalition, and important externalities. The debate over medical futility in Texas has had much broader implications in the dispute over Health Care Reform.^

Intensive care unit utilization among patients with cancer at the end of life

Over the last 2 decades, survival rates in critically ill cancer patients have improved. Despite the increase in survival, the intensive care unit (ICU) continues to be a location where end-of-life care takes place. More than 20% of deaths in the United States occur after admission to an ICU, and as baby boomers reach the seventh and eighth decades of their lives, the volume of patients in the ICU is predicted to rise. The aim of this study was to evaluate intensive care unit utilization among patients with cancer who were at the end of life. End of life was defined using decedent and high-risk cohort study designs. The decedent study evaluated characteristics and ICU utilization during the terminal hospital stay among patients who died at The University of Texas MD Anderson Cancer Center during 2003-2007. The high-risk cohort study evaluated characteristics and ICU utilization during the index hospital stay among patients admitted to MD Anderson during 2003-2007 with a high risk of in-hospital mortality. Factors associated with higher ICU utilization in the decedent study included non-local residence, hematologic and non-metastatic solid tumor malignancies, malignancy diagnosed within 2 months, and elective admission to surgical or pediatric services. Having a palliative care consultation on admission was associated with dying in the hospital without ICU services. In the cohort of patients with high risk of in-hospital mortality, patients who went to the ICU were more likely to be younger, male, with newly diagnosed non-metastatic solid tumor or hematologic malignancy, and admitted from the emergency center to one of the surgical services. A palliative care consultation on admission was associated with a decreased likelihood of having an ICU stay. There were no differences in ethnicity, marital status, comorbidities, or insurance status between patients who did and did not utilize ICU services. Inpatient mortality probability models developed for the general population are inadequate in predicting in-hospital mortality for patients with cancer. The following characteristics that differed between the decedent study and high-risk cohort study can be considered in future research to predict risk of in-hospital mortality for patients with cancer: ethnicity, type and stage of malignancy, time since diagnosis, and having advance directives. Identifying those at risk can precipitate discussions in advance to ensure care remains appropriate and in accordance with the wishes of the patient and family.^

Une analyse des limites inhérentes au nouveau régime des directives médicales anticipées face à l'essor du droit à l'autonomie décisionnelle du patient

Résumé : La Loi concernant les soins de fin de vie ainsi que la mise en place du régime des directives médicales anticipées sont le résultat d’une profonde transformation sociétale, guidée par l’importance grandissante du respect de l’autonomie décisionnelle des personnes et à leur droit à l’autodétermination. Au regard de ce contexte, cet essai décrit en première partie l’état du droit actuel en matière de volontés exprimées de manière anticipée, il analyse les enjeux qui s’y rapportent tout en soulevant les pistes de réflexion déjà amorcées en droit québécois. Il existe effectivement de nombreux outils qui permettent à un individu d’exprimer ses volontés en prévision de son inaptitude, mais les directives médicales anticipées se distinguent d’une façon bien précise : elles possèdent un caractère contraignant qui reconnaît la primauté des volontés relatives aux soins. Or, parallèlement à cela, le régime des directives médicales anticipées impose des limites à ce droit. Dans ce contexte d’essor du droit à l’autonomie, cet essai étudie, en seconde partie, les limites inhérentes au régime des directives médicales anticipées puis propose une analyse critique des défis liés à l’opérationnalisation clinique de ces directives.

The impact of health information technology on the quality of medical and health care : a systematic review

Objective: To systematically review the published evidence of the impact of health information technology (HIT) on the quality of medical and health care specifically clinicians’ adherence to evidence-based guidelines and the corresponding impact this had on patient clinical outcomes. In order to be as inclusive as possible the research examined literature discussing the use of health information technologies and systems in both medical care such as clinical and surgical, and other health care such as allied health and preventive services.----- Design: Systematic review----- Data Sources: Relevant literature was systematically searched on English language studies indexed in MEDLINE and CINAHL(1998 to 2008), Cochrane Library, PubMed, Database of Abstracts of Review of Effectiveness (DARE), Google scholar and other relevant electronic databases. A search for eligible studies (matching the inclusion criteria) was also performed by searching relevant conference proceedings available through internet and electronic databases, as well as using reference lists identified from cited papers.----- Selection criteria: Studies were included in the review if they examined the impact of Electronic Health Record (EHR), Computerised Provider Order-Entry (CPOE), or Decision Support System (DS); and if the primary outcomes of the studies were focused on the level of compliance with evidence-based guidelines among clinicians. Measures could be either changes in clinical processes resulting from a change of the providers’ behaviour or specific patient outcomes that demonstrated the effectiveness of a particular treatment given by providers. ----- Methods: Studies were reviewed and summarised in tabular and text form. Due to heterogeneity between studies, meta-analysis was not performed.----- Results: Out of 17 studies that assessed the impact of health information technology on health care practitioners’ performance, 14 studies revealed a positive improvement in relation to their compliance with evidence-based guidelines. The primary domain of improvement was evident from preventive care and drug ordering studies. Results from the studies that included an assessment for patient outcomes however, were insufficient to detect either clinically or statistically important improvements as only a small proportion of these studies found benefits. For instance, only 3 studies had shown positive improvement, while 5 studies revealed either no change or adverse outcomes.----- Conclusion: Although the number of included studies was relatively small for reaching a conclusive statement about the effectiveness of health information technologies and systems on clinical care, the results demonstrated consistency with other systematic reviews previously undertaken. Widescale use of HIT has been shown to increase clinician’s adherence to guidelines in this review. Therefore, it presents ongoing opportunities to maximise the uptake of research evidence into practice for health care organisations, policy makers and stakeholders.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 1 (New South Wales)

This is the first article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in New South Wales. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training medical professionals receive on issues such as advance directives and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in New South Wales.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 2 (Queensland)

This is the second article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in Queensland, including the parens patriae jurisdiction of the Supreme Court. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training medical professionals receive on issues such as advance health directives and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in Queensland.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : part 3 (Victoria)

This is the final article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in Victoria. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training that medical professionals receive on issues such as refusal of treatment certificates and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in Victoria. The article also draws together themes from the series as a whole, including conclusions about the need for more and better medical education and about law reform generally.

Enduring documents : improving the forms, improving the outcomes

Most Australian states have introduced legislation to provide for enduring documents for financial, personal and health care decision making in the event of incapacity. Since the introduction of Enduring Powers of Attorney (EPAs) and Advance Health Directives (AHDs) in Queensland in 1998, concerns have continued to be raised by service providers, professionals and individuals about the uptake, understanding and appropriate use of these documents. In response to these concerns, the Department of Justice and Attorney-General (DJAG) convened a Practical Guardianship Initiatives Working Party. This group identified the limited evidence base available to address these concerns. In 2009, a multidisciplinary research team from the University of Queensland and the Queensland University of Technology was awarded $90,000 from the Legal Practitioners Interest on Trust Account Fund to undertake a review of the current EPA and AHD forms. The goal of the research was to gather data on the content and useability of the forms from the perspectives of a range of stakeholders, particularly those completing the EPA and AHD, witnesses of these documents, attorneys appointed under an EPA, and health professionals involved in the completion of an AHD or dealing with it in a clinical context. The researchers also sought to gather information from the perspective of Aboriginal and Torres Strait Islander (ATSI) individuals as well people from culturally and linguistically diverse (CALD) groups. Although the focus of the research was on the forms and the extent to which the current design, content and format represents a barrier to uptake, in the course of the research, some broader issues were identified which have an impact on the effectiveness of the EPA and AHD in achieving the goals of planning for financial and personal and health care in advance of losing capacity. The data gathered enabled the researchers to achieve the primary goal of the research: to make recommendations to improve the content and useability of the forms which hopefully will lead to an increased uptake and appropriate use of the forms. However, the researchers thought it was important not to ignore broader policy issues that were identified in the course of the research. These broader issues have been highlighted in this Report, and the researchers have responded to them in a variety of ways. For some issues, the researchers have suggested alterations that could be made to the forms to address the particular concerns. For other issues, the researchers have suggested that Government may need to take specific action such as educating the broader community with some attention to strategies that engage particular groups within communities. Other concerns raised can only be dealt with by legislative reform and, in some of these cases, the researchers have identified issues that Government may wish to consider further. We do note, however, that it is beyond the scope of this Report to recommend changes to the law. This three stage mixed methods project aimed to provide systematic evidence from a broad range of stakeholders in regard to: (i) which groups use and do not use these documents and why, (ii) the contribution of the length/complexity/format/language of the forms as barriers to their completion and/or effective use, and (iii) the issues raised by the current documents for witnesses and attorneys. Understanding and use of EPAs and AHDs were generally explored in separate but parallel processes. A purposive sampling strategy included users of the documents as principals and attorneys, and professionals, witnesses and service providers who assist others to execute or use the forms. The first component of this study built on existing knowledge using a Critical Reference Group and material provided by the DJAG Practical Guardianship Initiatives Working Party. This assisted in the development of the data collection tools for subsequent stages. The second component comprised semi-structured interviews and focus groups with a targeted sample of current users of the forms, potential users, witnesses and other professionals to provide in-depth information on critical issues. Outreach to Aboriginal and Torres Strait Islander Elders and individuals and workers with CALD groups ensured a broad sample of potential users of the two documents. Fifty individual interviews and three focus groups were completed. Most interviews and focus groups focused on perceptions of, and experiences with, either the EPA or the AHD form. In the interviews with Indigenous people and the CALD focus groups, however, respondents provided their perceptions and experiences of both documents. In general, these respondents had not used the forms and were responding to the documents made available in the interview or focus group. In total, seventy-seven individuals were involved in interviews or focus groups. The final component comprised on-line surveys for EPA principals, EPA attorneys, AHD principals, witnesses of EPAs and AHDs and medical practitioners with experience of AHDs as nominated and/or treating doctors. The surveys were developed from the initial component and the qualitative analysis of the interview and focus group data. A total of 116 surveys were returned from major cities and regional Queensland. The survey data was analysed descriptively for patterns and trends. It is important to note that the aim of the survey was to gain insight into issues and concerns relating to the documents and not to make generalisations to the broader population.

Social ecological influences on preferences for care provided at the end of life amongst Taiwanese city-dwelling adults

Social and cultural elements are an essential part of the contexts within which people understand their word and make end-of-life decisions. A developmental social ecological model was used in this thesis to provide a comprehensive framework for examining influences on end-of-life preferences. The findings support claims made by social ecologists that individual's health-related choices can be influenced by cultural, social contextual and environmental factors over the course of life. The results of this study have implications for health professionals and the practices they can adopt to enhance end-of-life care.

Adults who lack capacity : substitute decision-making

• Mechanisms to facilitate consent to healthcare for adults who lack capacity are necessary to ensure that these adults can lawfully receive appropriate medical treatment when needed. • In Australia, the common law plays only a limited role in this context, through its recognition of advance directives and through the parens patriae jurisdiction of superior courts. • Substitute decision-making for adults who lack capacity is facilitated primarily by guardianship and other related legislation. This legislation, which has been enacted in all Australian States and Territories, permits a range of decision-makers to make different types of healthcare decisions. • Substitute decision-makers can be appointed by the adult or by a guardianship or other tribunal. Where there is no appointed decision-maker, legislation generally empowers those close to the adult to make the relevant decision. Most Australian jurisdictions have also provided for statutory advance directives. • For the most serious of decisions, such as non-therapeutic sterilisations, consent can only be provided by a tribunal. Other decisions can generally be made by a range of substitute decision-makers. Some treatment, such as very minor treatment or that which is needed in an emergency, can be provided without consent. • Guardianship legislation generally establishes a set of principles and/or other criteria to guide healthcare decisions. Mechanisms have also been established to resolve disputes as to who is the appropriate decision-maker and how a decision should be made.

Dignidade na vida, na doença e para a morte: as diretivas antecipadas como instrumento de valorização da pessoa

A dignidade da pessoa humana e a autonomia privada espraiam-se pela experiência da vida, alcançando a doença e a morte. As diretivas antecipadas, gênero dos quais são espécies o testamento vital e o mandato duradouro, constituem negócio jurídico de caráter existencial que têm por objetivo assegurar a realização da dignidade da pessoa e o cumprimento dos atos de autonomia nas situações em que a pessoa estiver incapacitada para manifestar sua vontade. As diretivas representam instrumento de autodeterminação através do qual a pessoa disciplina os tratamentos médicos que aceita ou não ser submetida, autoriza doação de órgão, estipula se tem interesse em conhecer seu estado clínico e/ou nomeia terceira pessoa para tomar estas decisões em seu lugar. As três primeiras hipóteses constituem o que usualmente se qualifica como testamento vital, enquanto a última situação descrita configura o mandato duradouro. O objeto de estudo abrange a evolução das diretivas antecipadas, a disciplina existente em países que já regulamentaram o tema, a legitimação no sistema jurídico brasileiro (o que autoriza a conclusão favorável a sua utilização independentemente de lei expressa) e a sistematização deste negócio jurídico perante o ordenamento jurídico.

Adaptação transcultural do formulário POLST: Physician Orders for Life-Sustaining Treatment

Pós-graduação em Saúde Coletiva - FMB

Association between education in EOL care and variability in EOL practice: a survey of ICU physicians

This study investigated the association between physician education in EOL and variability in EOL practice, as well as the differences between beliefs and practices regarding EOL in the ICU. Physicians from 11 ICUs at a university hospital completed a survey presenting a patient in a vegetative state with no family or advance directives. Questions addressed approaches to EOL care, as well physicians' personal, professional and EOL educational characteristics. The response rate was 89%, with 105 questionnaires analyzed. Mean age was 38 +/- A 8 years, with a mean of 14 +/- A 7 years since graduation. Physicians who did not apply do-not-resuscitate (DNR) orders were less likely to have attended EOL classes than those who applied written DNR orders [0/7 vs. 31/47, OR = 0.549 (0.356-0.848), P = 0.001]. Physicians who involved nurses in the decision-making process were more likely to be ICU specialists [17/22 vs. 46/83, OR = 4.1959 (1.271-13.845), P = 0.013] than physicians who made such decisions among themselves or referred to ethical or judicial committees. Physicians who would apply "full code" had less often read about EOL [3/22 vs. 11/20, OR = 0.0939 (0.012-0.710), P = 0.012] and had less interest in discussing EOL [17/22 vs. 20/20, OR = 0.210 (0.122-0.361), P < 0.001], than physicians who would withdraw life-sustaining therapies. Forty-four percent of respondents would not do what they believed was best for their patient, with 98% of them believing a less aggressive attitude preferable. Legal concerns were the leading cause for this dichotomy. Physician education about EOL is associated with variability in EOL decisions in the ICU. Moreover, actual practice may differ from what physicians believe is best for the patient.

Quality of care for uninsured type 2 diabetic patients in a financial assistance medical home model

The medically uninsured population in the United States is 16% or 42 million people and consists of a significant number of Type 2 diabetic patients which is the predominant form of diabetes with 798,000 new cases diagnosed each year. There is limited health services research on uninsured populations concerning health system measures or specific disease conditions. ^ The purpose of this investigation was to determine the impact a newly implemented health care program had on the quality of care provided to patients with Type 2 diabetes. The primary study objective was to compare the quality of care while controlling for utilization, and health status of patients in the new program to their status during the previous financial assistance program. The research design was a retrospective matched-pairs design. The study population consisted of 225 patients who received medical care during 1996 and 1997 at the University Health System in San Antonio, Texas. ^ Six quality of care measures individually failed to demonstrate a statistically significant difference when compared between the two periods. However, an index measure reflecting the number of patients who received all six of the quality of care measures demonstrated a statistically significant increase in 1997 (p-value < 0.05). In 1996, 8 patients (2.6%) received all six medical management components. In 1997, 38 patients (16.8%) received all six medical management components. Four regression models were analyzed; two out of the four models demonstrated inconsistent results based on the program membership variable. ^ It is concluded that there has been a small effect of the Carelink program demonstrated by an increase from 8 to 38 patients receiving all quality of care components for Type 2 diabetics at the UHS. It is recommended that additional research be conducted in order to evaluate the quality of care provided to Type 2 diabetic patients. ^