“It’s Like Playing With Your Destiny”: Bosnian Immigrants’ Views of Advance Directives and End-of-Life Decision-Making

Patient autonomy is a primary value in US health care. It is assumed that patients want to be fully and directly informed about serious health conditions and want to engage in advance planning about medical care at the end-of-life. Written advance directives and proxy decision-makers are vehicles to promote autonomy when patients are no longer able to represent their wishes. Cross-cultural studies have raised questions about the universal acceptance of these health care values among all ethnicities. In the current investigation, Bosnian immigrants were interviewed about their views of physician–patient communication, advance directives, and locus of decision-making in serious illness. Many of the respondents indicated that they did not want to be directly informed of a serious illness. There was an expressed preference for physician- or family-based health care decisions. Advance directives and formally appointed proxies were typically seen as unnecessary and inconsistent with many respondents’ personal values. The findings suggest that the value of individual autonomy and control over the health care decisions may not be applicable to cultures with a collectivist orientation.     

Alzheimer,dementia and the living will: a proposal

The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, even though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician–patient–family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached.     

"It's like playing with your destiny": Bosnian immigrants' views of advance directives and end-of-life decision-making

Patient autonomy is a primary value in US health care. It is assumed that patients want to be fully and directly informed about serious health conditions and want to engage in advance planning about medical care at the end-of-life. Written advance directives and proxy decision-makers are vehicles to promote autonomy when patients are no longer able to represent their wishes. Cross-cultural studies have raised questions about the universal acceptance of these health care values among all ethnicities. In the current investigation, Bosnian immigrants were interviewed about their views of physician–patient communication, advance directives, and locus of decision-making in serious illness. Many of the respondents indicated that they did not want to be directly informed of a serious illness. There was an expressed preference for physician- or family-based health care decisions. Advance directives and formally appointed proxies were typically seen as unnecessary and inconsistent with many respondents personal values. The findings suggest that the value of individual autonomy and control over the health care decisions may not be applicable to cultures with a collectivist orientation.     

The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review.

The use of proxy raters of patients' quality of life has been suggested as a means of facilitating the factoring of quality-of-life considerations explicitly into the medical decision-making process and of resolving the problem of missing data in longitudinal quality-of-life investigations. This review addresses two questions related to the potential role of such proxy raters in clinical research and practice: (1) to what extent are health care providers and lay individuals involved in the care of patients ("significant others") able to assess accurately the quality of life of patients with chronic disease? and (2) under what conditions, if any, is inclusion of such proxy ratings in quality-of-life investigations warranted? Although the extant literature yields few unequivocal findings, a number of clear trends can be identified: (i) health care providers and significant others tend, in general, to underestimate patients' quality of life; (ii) health care providers and significant others appear to evaluate patients' quality of life with a comparable degree of (in)accuracy; (iii) health care providers tend to underrate the pain intensity of their patients; (iv) proxy ratings appear to be more accurate when the information sought is concrete and observable; and (v) while significant others' ratings tend to be more accurate when they live in close proximity to the patient, they can also be biased by the caregiving function of the rater. There is need for more methodologically sound studies that: (a) incorporate head-to-head comparisons of health care providers and significant others as proxy raters; (b) employ well-validated quality-of-life measures; and (3) employ a longitudinal design in order to examine the effect of changes in patients' health status over time on the ability of proxies to provide valid quality-of-life assessments.     

Advance care planning in long-term care facilities

Residents of long-term care facilities are at risk of serious medical illnesses and being unable to express choices when difficult treatment decisions must be made. Advance care planning (ACP) allows residents to consider, make, and communicate their preferences for how medical decisions should be made if they are unable to participate in the decision-making process. This article reviews the three steps in ACP: consideration of options and expression of values, communication of decisions, and documentation of the choices. The article defines and describes the particular value of ACP in long-term care facilities, reviews the literature on successful ACP programs in long-term care, and concludes with practical suggestions on how to develop and implement ACP programs.     

Travel for primary care

Data and findings are presented pertaining to the expressed travel limits for general medical care of a rural population and the degree to which their observed travel behavior reflects these limits. Considerable variation in expressed reasonable and maximum travel distances and times was observed among respondents in a countywide cross-section sample of the resident population in western Maine. A substantial proportion of the respondents' visits for general medical care exceeds their reasonable travel limits and some visits exceed the travel limits they considered maximal. Additionally, a comparison of expectations from this study with those of a similar population in another section of the county reveals significant differences. The findings suggest that health planning could be considerably enhanced by a better understanding of patient preferences for medical care travel behavior, the origins of these preferences, and their relationship to the use of available medical care opportunities. This is particularly true if stated goals of incorporating patient preferences into the health planning process are to be realized.     

Failure of the Current Advance Care Planning Paradigm: Advocating for a Communications-Based Approach

The purpose of advance care planning (ACP) is to allow an individual to maintain autonomy in end-of-life (EOL) medical decision-making even when incapacitated by disease or terminal illness. The intersection of EOL medical technology, ethics of EOL care, and state and federal law has driven the development of the legal framework for advance directives (ADs). However, from an ethical perspective the current legal framework is inadequate to make ADs an effective EOL planning tool. One response to this flawed AD process has been the development of Physician Orders for Life Sustaining Treatment (POLST). POLST has been described as a paradigm shift to address the inadequacies of ADs. However, POLST has failed to bridge the gap between patients and their autonomous, preferred EOL care decisions. Analysis of ADs and POLST reveals that future policy should focus on a communications-based approach to ACP that emphasizes ongoing interactions between healthcare providers and patients to optimize EOL medical care to the individual patient.     

Sizing free-standing ambulatory care facilities

This guide, written by an administrator and an industrial engineer, identifies and discusses the factors that should be considered when planning space requirements for ambulatory care facilities. The authors view sizing the ambulatory care facility as a complicated sequential task where trade-offs are made with regard to several factors: philosophy of patient care; cost; expansion requirements; patient comfort and waiting time; patient privacy; staff preferences; utilization patterns; and scurity of the faculty. It is suggested that the weight assigned to each factor when making trade-offs will be largely affected by the philosophy of patient care. The authors divide ambulatory care facilities into five functional groups: (1) basic medical services; (2) supporting medical services; (3) administrations; (4) support and service facilities; and (5) community and secondary support facilities. There are tables summarizing recommended space requirements for each of the functional groups based on mathematical models of the number and type of people using them (i.e., a typical physician is expected to see 24 patients per day). Space requirements for the whole clinic can be determined by adding together those required for each functional component. Provisions for growth and technological advances are discussed. An extensive bibliography is included.     

Towards a theory of perceived and medically defined need

Abstract This paper presents a theoretical model to be used for comparative studies of lay and medically defined need for medical care. The model is based on an analysis of the concept of need and need statements, lay and medical concepts of ill health and the relationships between need, ill health and utilization of medical care. It is concluded, on both theoretical and empirical grounds, that need is relative to time, place and assessor. The most important determinants of assessments of for what and when one should seek medical attention are assumed to be the assessor's perception and valuation of the health status and his expectations of the probable out-come of medical care use. Assessment of need is seen as a process in which past experiences and expectations of the future course of the health status affect decision-making. It is emphasized that the points of view of both client and provider should be taken into consideration in medical practice, as well as in health care planning, because the two perspectives tend to be only partially congruent. The nature and extent of these incongruences could be studied by the application of the proposed model.     

Case study: development of a forms-design guidebook

Implementation of the approval and official format of medical record forms procedure along with the use of the forms-design guidebook will result in a forms-management program that will be efficient and effective. This program is sufficiently detailed to provide forms that are consistent and useful. The procedure will provide the necessary documentation for forms control and will facilitate an approval process that is standardized and faster than before. An overview of the steps taken to complete this project are listed in the box entitled "Steps for Revision of Forms-Control Process." The control of medical record forms will provide documents that are useful and accurate for purposes of communication and planning of quality patient care and will meet the requirements of licensing and accrediting agencies. Also, the concentration on the consideration of cost throughout this project will reduce costs by improved efficiency in the paperwork system and by reducing both the production and the usage costs of forms.     

Advance care planning for residents in aged care facilities: what is best practice and how can evidence-based guidelines be implemented?

Background Advance care planning in a residential care setting aims to assist residents to make decisions about future healthcare and to improve end-of-life care through medical and care staff knowing and respecting the wishes of the resident. The process enables individuals and others who are important to them, to reflect on what is important to the resident including their beliefs/values and preferences about care when they are dying. This paper describes a project conducted as part of the Joanna Briggs Institute Clinical Aged Care Fellowship Program implemented at the Manningham Centre in metropolitan Melbourne in a unit providing services for 46 low and high care residents. Objectives The objectives of the study were to document implementation of best practice in advance care planning in a residential aged care facility using a cycle of audit, feedback and re-audit cycle audit with a clinical audit software program, the Practical Application of Clinical Evidence System. The evidence-based guidelines found in 'Guidelines for a Palliative Approach in Residential Aged Care' were used to inform the process of clinical practice review and to develop a program to implement advance care planning. Results The pre-implementation audit results showed that advance care planning practice was not based on high level evidence as initial compliance with five audit criteria was 0%. The barriers to implementation that became apparent during the feedback stage included the challenge of creating a culture where advance care planning policy, protocols and guidelines could be implemented, and advance care planning discussions held, by adequately prepared health professionals and carers. Opportunities were made to equip the resident to discuss their wishes with family, friends and healthcare staff. Some residents made the decision to take steps to formally document those wishes and/or appoint a Medical Enduring Power of Attorney to act on behalf of the resident when they are unable to communicate wishes. The post-implementation audit showed a clear improvement as compliance ranged from 15-100% for the five audit criteria. Strong leadership by the project team was effective in engaging staff in this quality improvement program. Conclusion The outcomes of the project were extremely positive and demonstrate a genuine improvement in practice. All audit criteria indicate that the Manningham Centre is now positively working towards improved practice based on the best available evidence. It is hoped that as the expertise developed during this project is shared, other areas of gerontological practice will be similarly improved and more facilities caring for the older person will embrace evidence-based practice.     

临床路径评价模式探讨

对临床路径进行科学、系统的评价是提高临床路径有效性的重要手段。本文旨在探讨建立临床路径评价的五步评价模式，即临床路径评价的计划、报告和数据收集系统的设计和开发、数据收集和分析报告、评价的评估五个步骤。运用该模式对临床路径进行科学系统的评价，可以取得关于病人医护状况变化的可靠信息，反映病人医护结果的变化趋势，使临床路径真正成为医护质量持续改进的有力工具。     

Family presence in routine medical visits: a meta-analytical review

Older adults are commonly accompanied to routine physician visits, primarily by adult children and spouses. This is the first review of studies investigating the dynamics and consequences of patient accompaniment. Two types of evidence were examined: (1) observational studies of audio and/or videotaped medical visits, and (2) surveys of patients, families, or health care providers that ascertained experiences, expectations, and preferences for family companion presence and behaviors in routine medical visits. Meta-analytic techniques were used to summarize the evidence describing attributes of unaccompanied and accompanied patients and their companions, medical visit processes, and patient outcomes. The weighted mean rate of patient accompaniment to routine adult medical visits was 37.6% in 13 contributing studies. Accompanied patients were significantly older and more likely to be female, less educated, and in worse physical and mental health than unaccompanied patients. Companions were on average 63 years of age, predominantly female (79.4%), and spouses (54.7%) or adult children (32.2%) of patients. Accompanied patient visits were significantly longer, but verbal contribution to medical dialog was comparable when accompanied patients and their family companion were compared with unaccompanied patients. When a companion was present, health care providers engaged in more biomedical information giving. Given the diversity of outcomes, pooled estimates could not be calculated: of 5 contributing studies 0 were unfavorable, 3 inconclusive, and 2 favorable for accompanied relative to unaccompanied patients. Study findings suggest potential practical benefits from more systematic recognition and integration of companions in health care delivery processes. We propose a conceptual framework to relate family companion presence and behaviors during physician visits to the quality of interpersonal health care processes, patient self management and health care.     

A social work perspective: attitudes toward end-of-life planning

This research examined social workers' attitudes toward end-of-life planning and related factors in a cross-sectional study (N?=?844). Data were gathered on completion of a health care proxy, personal comfort, training experiences of social workers, and demographics. Attitudes toward end-of-life planning were related to personal completion of the health care proxy, personal comfort, and years of social work experience. These measures remained significant in all steps of the regression, regardless of practice grouping (health and aging or other than health and aging), suggesting the relative importance of personal rather than professional aspects. Respondents in the health and aging fields are older than those in other than health and aging, underscoring concerns about workforce issues in the field of aging.     

Equity and efficiency in medical manpower planning: defining objectives and looking towards the future

If medical manpower planning is to be successful in terms of providing the correct future manpower levels to produce the desired (efficient) health care services then the planners must recognise the ultimate objectives of the provision of health care services and the production relationship between the services provided (inputs) and the effects on patient health status (outputs). Furthermore the planning of medical manpower should not be done in isolation under the implicit assumption that other important inputs will be available as required but should be part of an overall planning process for the future production of improvements in health status. Having determined the objectives for outputs the future levels of different types of manpower will depend on the identification of the efficient mix of inputs. In addition the values of other variables influencing the production relationship (e.g. trends in the consumption of certain goods) should be considered in the planning process since observed trends show that they do not remain constant over time.     

Facilitating advance care planning with ethnically diverse groups of frail,low‐income elders in the USA: perspectives of care managers on challenges and recommendations

This study examined care managers' perspectives on facilitating advance care planning (ACP) with ethnically diverse elders enrolled in a managed long‐term care programme that coordinates medical and long‐term care for frail, poor elders in the USA. Seven in‐depth interviews and two focus groups were conducted with 24 lead supervisors and care managers of care management teams between July and August 2008; data were analysed with qualitative thematic analysis method. Participants identified four main sources of challenges: death and dying are taboo discussion topics; the dying process is beyond human control; family and others hold decision‐making responsibility; and planning for death and dying is a foreign concept. Participants' recommendations to address these challenges were to develop trust with elders over time; cultivate cultural knowledge and sensitivity to respect value orientations; promote designating a healthcare proxy; recognise and educate families and community leaders as critical partners in ACP and provide practical support as needed throughout the illness experience. These findings suggest important practice implications for care managers working with increasingly diverse cultural groups of elders at the end of life.     

A Social Work Perspective: Attitudes Toward End-of-Life Planning

This research examined social workers' attitudes toward end-of-life planning and related factors in a cross-sectional study (N?=?844). Data were gathered on completion of a health care proxy, personal comfort, training experiences of social workers, and demographics. Attitudes toward end-of-life planning were related to personal completion of the health care proxy, personal comfort, and years of social work experience. These measures remained significant in all steps of the regression, regardless of practice grouping (health and aging or other than health and aging), suggesting the relative importance of personal rather than professional aspects. Respondents in the health and aging fields are older than those in other than health and aging, underscoring concerns about workforce issues in the field of aging.     

Development of a proxy wealth index for women utilizing emergency obstetric care in Bangladesh

There are increasing concerns regarding inequities in access to health care, and hence calls for routine data collection to improve monitoring. For many developing countries, such as Bangladesh, increasing the availability and uptake of emergency obstetric care (EmOC) is vital in improving maternal health. It is crucial, however, that women of all socio-economic status benefit from this. This paper describes the development and validation of a proxy wealth index for assessing women's socio-economic status in Bangladesh as they are admitted to hospital. Existing poverty assessment tools are unsuitable for use in this context as they are too lengthy or need to be administered at household or community level. We sought to develop a tool with a limited number of indicators to allow quick administration and avoid interference with treatment. We also aimed to develop a pragmatic tool to be able to calculate a score in the field. The steps, involving selecting and weighting indicators, assigning a proxy wealth score and validating the score, are outlined. Indicators were selected from the Bangladeshi Demographic and Health Survey (DHS) data, which allowed comparison of socio-economic status between women using EmOC and those in the wider population. The tool proved quick and easy to use and was acceptable to women and their families. The validity of the tool was established by means of factor analysis. Our comparison with DHS data suggested that women using EmOC were significantly wealthier than women in the wider population. The implications of this, as well as the strengths and limitations of the proxy wealth index, are discussed. The proxy wealth index offers potential as a pragmatic and quick means of assessing poverty status in a busy hospital setting. Such a tool may enable monitoring of equity in access to treatment and identification of those least able to afford treatment, to enable any mechanisms in place to pay for care to be applied in a timely fashion, so avoiding delays in treating life-threatening complications.